Here’s the latest update on my situation, for those interested…
On the 10th, I saw Dr. “Q” down at UNMH, and he said he wanted new MRI and CT/PET scans done and for me to bring them in for an appointment they’d scheduled for the 31st of this month.
I told him that, according to my blood work, the infection is no longer active, and he told me to get a new set of MRI and CT/PET scans done, and had his staff make an appointment for me to go back to see him on the 31st. He said that if I wanted him to, he would still be happy to do the surgery, but to think about the option of not having it done now, go home and take antibiotics every day to keep it down, and have an MRI done every three months to make sure it doesn’t go active again.
I got the scans done, and they show that I’ve got one pocket of infection, (basically a cyst,) still in the tissues in my pelvis, but the infection has, (the closest term is,) gone into remission. There’s been no additional destruction of the bone in my pelvis and left thigh from it either.
I’ve thought about it and talked with trusted doctors and nurses, and they’ve advised that I go ahead and get the surgery done now, while the infection isn’t running rampant through my pelvis, and I’ve decided to get it done as soon as possible for several reasons.
1.) The surgery is going to have to be done eventually anyway, and waiting for the infection to become active again is waiting for the surgery to be done on an urgent/emergency basis with my body under greater stress from fighting the infection.
2.) If I do wait, and the infection goes active, it’s likely I won’t notice anything other than becoming extremely drained of energy again. Last time around, it didn’t give me a fever or anything noticeable except for my feeling drained all the time. If this happens, it will do more damage before the surgery even if they knock it back down to a dormant state.
3.) If the infection does become active again, there’s a good chance that it will end up going septic and in such a case, if not treated immediately, I would be dead within three days.
4.) Getting it done now would mean an better recovery for me, both in the healing of the surgical wounds and in having the energy for the rehab I’ll have to go through in order to learn how to do things a little differently without the left leg there. (I don’t know how much it’s passive support helps me with tasks like hauling the wheelchair into the car, bending over to pick things off the floor, use the bathroom, etc., but in at least a few areas, I’ll undoubtedly have to change how I do things pretty drastically in order to be fully independent again.)
Apparently, some sort of family emergency happened with Dr. “Q”, because they cancelled my my 31st appointment and the earliest I can be seen is June 28th. When I called to try to get an earlier appointment, they said Dr. “Q” was gone for three weeks, and he wouldn’t have appointments scheduled if this was an planned absence.
So, I’ve decided to go through with the surgery, but have to wait until June 28th to schedule it, and given that Dr. “Q” is on oncologist and will be backed up on his cancer patients need for pelvic surgeries, I’m expecting that I’ll be waiting awhile after that before I can have the surgery done, possibly a couple of months. Cancer patients who require pelvic surgery will understandably take precedence over my surgery so long as my situation has been stabilized and remains stable.
My lease on my apartment ends in on June 30th, so I’m going to let it go, put my stuff in the storage locker I’ve already go rented, and I become ready to be discharged, start looking for a house to rent, and given the current housing market, I’m guessing there’ll be plenty of folks willing to take my dogs rather than have a second home sitting empty and still having to make payments on it or, worse, facing having to sell that property at a loss or get foreclosed on.
So starting in July, I’ll be officially HOMELESS!!! I wonder if the libs will suddenly like me with that new status! LOL…
Wednesday, May 18, 2011
Friday, April 22, 2011
Finally got my appointment to see the doctor at UNMH!
I finally have an appointment to see Dr. “Q” down at UNMH! As you may recall from my posting when my paperwork was approved for the VA to pay for my surgery, (March 8th,) it’s been awhile.
There was some VA administrative back and forth that had to go through it’s cycle, (took about two weeks,) with one of the emails sent to my doctor, (Dr. “E”,) that was one of the dumbest questions I’ve ever heard of. I’m going in to have part of my pelvis removed and my left leg amputated, and the question they sent was, “Can this be done at our facility or another VA on an outpatient basis?”
Yeah, right… And if I could walk, I’d just hop home after it was done! Of course, this IS the government health care that all those on the left are so badly wanting for all Americans.
Anyway, after they’d gotten done with all that garbage, I was told they’d contacted Dr. “Q” down at UNMH and were waiting for an appointment to be made for me to go in and see him, presumably, to find out if there are any new tests or scans he wants run and to schedule the surgery. Keep in mind that it’s been more than six weeks that I’ve been waiting for this appointment to be scheduled. How’s that for the efficiency that the government will bring to the health care system?
I told my doctor on Friday that if they hadn’t made an appointment by Wednesday, I’d call on Thursday to make my own appointment. Well, I did that and, after being transferred a couple of times to different people, got hold of Dr. “Q”’s office and it took less than five minutes to make the appointment, with the earliest opening being on May 10th, 2 ½ weeks away.
Now why it would be so hard for someone in admin to call Dr. “Q”’s office themselves and make the appointment for me is beyond me, but if I’d just done it myself rather than waiting all this time, I’d have already seen him a bit less than a month ago, and since when I saw him last time he had a surgery opening six weeks after that, the odds are good I’d be two weeks away from getting this done, (as I type this,) rather than what will probably be two more months.
“Oh, but with government run health care there won’t be long delays!” Obamacare advocates say over and over. This is one example that such claims are BS. The surgery hasn’t been necessarily urgent since they knocked the infection back with my vacomycin infusions twice a day, two and a half hours each time not counting the time taken to set up the IV’s and get me hooked up to them, which is about another ten minutes unless they have to change all the tubing, (once a week,) in which case it’s more like 20 minutes. Gee, that’s five to six hours a day lying there with the IV going, or 230 hours or so since they approved the surgery to be done at UNMH, JUST on IV infusion time.
Gotta love government efficiency, doncha?
In other news, they operated on the bedsore on my right side, (at the top of the pelvis where you can feel the “wing” of the pelvis right near the surface,) and created a larger wound, but put a “wound vac” on it and it’s healing up well, though it still has a ways to go yet.
During that surgery, (pretty minor, without even having to knock me out, and able to use just a local anesthetic,) the doctor snagged a bone sample and I’ve got some other little bug infecting my bones. This one’s called, “Proteus,” and the infection disease folks came down and told me they’ve taken me off the vacomycin and put me on something else. This one only takes a half hour to infuse, but has to be done three times a day, (which screws with any passes I get.)
The problem with this is it doesn’t address the bone infection on the other side of my pelvis and in my left thigh. As aggressive as the infection got, eating completely through the front pubic bone, which is about an inch thick and four inches long, in just seven months after I’d been sent home and there was no infection in my pelvis at all, I’m a tad concerned about it popping up with the bone munchies again.
I talked to my doctor, (Dr. “E”,) about it and he assured me that they’d keep an eye with blood tests for signs the infection was flaring up again, and if so, I’d get put back on the vacomycin again in addition to this other antibiotic, so we’ll see what happens with that. I just don’t want it eating any more of my pelvis up before the surgery to cut all that crap out of there.
Now that things are coming to a conclusion for a date on this surgery, I have to admit I am getting a wee bit nervous about the whole thing because it will probably mean some pretty big changes in how I have to/am able to do things on a day to day basis, but I’m sure the adjustments won’t be as drastic as going from being able to run 11 miles in 66 minutes with a flak jacket on to being paralyzed from the chest down, so I’m sure I’ll be able to adjust. The main thing is I don’t know, at this point, how much of my pelvis the Dr. “Q” will have to cut out, and that’s a big part of how much of a change I’ll have to adjust to.
Again, sorry for this being so intermittent, but day to day life in the VA is pretty uneventful, with the exception of getting an irritating room mate for a little while or, like today when I was sleeping, having some well meaning volunteer wake me up, (by yelling at me three times,) to ask me if I wanted some ice cream. I said “No, I want to sleep!”, where if I’d had just a moment more to come up with an answer, I would have said, “No, I want your phone number!”, and when he asked why, I’d reply, “So I can call you up in the middle of the night when you’re asleep and ask you if you want any damned ice cream!” LOL…
So… I see Dr. “Q” at UNM hospital on May 10th, and will most likely find out then when I’m going to have this big surgery.
The one thing that has come to mind with all this is that going to get a second opinion from an outside Dr., (and expert in hemipelvectomies,) was probably the smartest thing I’ve done in the 30 years I’ve had of dealing with the VA.
There was some VA administrative back and forth that had to go through it’s cycle, (took about two weeks,) with one of the emails sent to my doctor, (Dr. “E”,) that was one of the dumbest questions I’ve ever heard of. I’m going in to have part of my pelvis removed and my left leg amputated, and the question they sent was, “Can this be done at our facility or another VA on an outpatient basis?”
Yeah, right… And if I could walk, I’d just hop home after it was done! Of course, this IS the government health care that all those on the left are so badly wanting for all Americans.
Anyway, after they’d gotten done with all that garbage, I was told they’d contacted Dr. “Q” down at UNMH and were waiting for an appointment to be made for me to go in and see him, presumably, to find out if there are any new tests or scans he wants run and to schedule the surgery. Keep in mind that it’s been more than six weeks that I’ve been waiting for this appointment to be scheduled. How’s that for the efficiency that the government will bring to the health care system?
I told my doctor on Friday that if they hadn’t made an appointment by Wednesday, I’d call on Thursday to make my own appointment. Well, I did that and, after being transferred a couple of times to different people, got hold of Dr. “Q”’s office and it took less than five minutes to make the appointment, with the earliest opening being on May 10th, 2 ½ weeks away.
Now why it would be so hard for someone in admin to call Dr. “Q”’s office themselves and make the appointment for me is beyond me, but if I’d just done it myself rather than waiting all this time, I’d have already seen him a bit less than a month ago, and since when I saw him last time he had a surgery opening six weeks after that, the odds are good I’d be two weeks away from getting this done, (as I type this,) rather than what will probably be two more months.
“Oh, but with government run health care there won’t be long delays!” Obamacare advocates say over and over. This is one example that such claims are BS. The surgery hasn’t been necessarily urgent since they knocked the infection back with my vacomycin infusions twice a day, two and a half hours each time not counting the time taken to set up the IV’s and get me hooked up to them, which is about another ten minutes unless they have to change all the tubing, (once a week,) in which case it’s more like 20 minutes. Gee, that’s five to six hours a day lying there with the IV going, or 230 hours or so since they approved the surgery to be done at UNMH, JUST on IV infusion time.
Gotta love government efficiency, doncha?
In other news, they operated on the bedsore on my right side, (at the top of the pelvis where you can feel the “wing” of the pelvis right near the surface,) and created a larger wound, but put a “wound vac” on it and it’s healing up well, though it still has a ways to go yet.
During that surgery, (pretty minor, without even having to knock me out, and able to use just a local anesthetic,) the doctor snagged a bone sample and I’ve got some other little bug infecting my bones. This one’s called, “Proteus,” and the infection disease folks came down and told me they’ve taken me off the vacomycin and put me on something else. This one only takes a half hour to infuse, but has to be done three times a day, (which screws with any passes I get.)
The problem with this is it doesn’t address the bone infection on the other side of my pelvis and in my left thigh. As aggressive as the infection got, eating completely through the front pubic bone, which is about an inch thick and four inches long, in just seven months after I’d been sent home and there was no infection in my pelvis at all, I’m a tad concerned about it popping up with the bone munchies again.
I talked to my doctor, (Dr. “E”,) about it and he assured me that they’d keep an eye with blood tests for signs the infection was flaring up again, and if so, I’d get put back on the vacomycin again in addition to this other antibiotic, so we’ll see what happens with that. I just don’t want it eating any more of my pelvis up before the surgery to cut all that crap out of there.
Now that things are coming to a conclusion for a date on this surgery, I have to admit I am getting a wee bit nervous about the whole thing because it will probably mean some pretty big changes in how I have to/am able to do things on a day to day basis, but I’m sure the adjustments won’t be as drastic as going from being able to run 11 miles in 66 minutes with a flak jacket on to being paralyzed from the chest down, so I’m sure I’ll be able to adjust. The main thing is I don’t know, at this point, how much of my pelvis the Dr. “Q” will have to cut out, and that’s a big part of how much of a change I’ll have to adjust to.
Again, sorry for this being so intermittent, but day to day life in the VA is pretty uneventful, with the exception of getting an irritating room mate for a little while or, like today when I was sleeping, having some well meaning volunteer wake me up, (by yelling at me three times,) to ask me if I wanted some ice cream. I said “No, I want to sleep!”, where if I’d had just a moment more to come up with an answer, I would have said, “No, I want your phone number!”, and when he asked why, I’d reply, “So I can call you up in the middle of the night when you’re asleep and ask you if you want any damned ice cream!” LOL…
So… I see Dr. “Q” at UNM hospital on May 10th, and will most likely find out then when I’m going to have this big surgery.
The one thing that has come to mind with all this is that going to get a second opinion from an outside Dr., (and expert in hemipelvectomies,) was probably the smartest thing I’ve done in the 30 years I’ve had of dealing with the VA.
Monday, April 11, 2011
It's not being "brave" or "tough", but a matter of perspective...
I opened a Facebook account after a friend of mine asked me to take a look at something on his FB page and found out that you can’t look at anyone’s FB page unless you’ve also got an account. I just put very basic information on my page, the only picture I have of myself, (my dog and I on the beach in Puerto Rico taken by a friend out there,) and after looking at his page and seeing what he’d wanted me to see, kind of forgot about it. I’d entered an email address I use for places I suspect I’ll get spam from, and rarely check, and when I did check it after it had quite a few messages in it’s inbox, found out that a bunch of people I’d known going all the way back to high school were wanting to “friend” me on there.
I’d lost touch with most of them not long after school, so even the ones who did know me when I was paralyzed didn’t know anything about the various health issues I’ve had to deal with, or the VA’s repeated screw ups that made problems worse rather than better. My starting this blog is the first most of them have heard about this stuff, and of course, right now I’m dealing with a pretty major situation.
What’s interesting is that even the people I have kept in touch with, and maybe especially since they’ve been there for all the 30 years of that wonderful government health care provided through the VA, I’ve had a good number of them tell me that they think I’m “tough”, or “brave”, and so on. The problem is that I’m really not.
I didn’t choose to have the problems I’ve had to deal with. Life’s not fair, and I was just dealt the hand I’ve got. It doesn’t take courage to deal with hardships in life that just happen to get thrown your way and make the best of whatever your situation ends up being. It just takes a certain way of looking at life, or perspective.
I don’t have to look very far to see people who are dealing with far greater difficulties than I have, or am at the moment. There are a number of quadriplegics on the ward here at the Spinal Cord Injury unit at this VA, and I’ve got good use of my hands and arms. One fellow that has become a friend is dealing with not only being paralyzed, but terminal cancer. Another, who gets on my nerves, came in for surgery on his shoulder because using your arms for everything isn’t what our shoulder’s are designed for, and it’s very common for the rotator cuff to wear out, but he was admitted four days before his surgery, and even though he’s a paraplegic and can take care of his own bowel care, (the term for digging the shit out of your body,) he just decided it’s pretty gross, and cheerfully had the aids do it for him, so I have to wonder where his self respect is, as well as be amazed at his selfishness in foisting what IS truly a disgusting task off on others, even if it is their job to do this for those who are unable to take care of that on their own.
Another fellow who only became a quadriplegic a couple of years ago has recently been discharged and is now living in a nursing home out in Arizona. (He does HIS own bowel care, even though he has very limited use of his hands and arms, as does everyone else in here who is able.) He needed people to help him smoke, since he doesn’t have the find hand and arm control needed to smoke a cigarette, and so he’d snag another patient who smokes to get the cigarette out of his pack, put it into his mouth, light it for him, and then flick the ash off every so often. I met him when I came in at the very end of 2009 for the six month stay last year that ended with the docs finally doing four surgeries on my leg to repair that bedsore that wouldn’t heal up, and can’t recall a single time he complained about his having broken his neck, (car accident,) or his limitations, but instead working as hard as he could on his rehabilitation. He can stand and walk short distances, (spinal cord injuries to the neck can be weird that way, where the arms and hands end up more disabled than one’s feet and legs,) and hopefully he’ll continue to get more return while his spinal cord continues to regenerate. (The spinal cord will try to regenerate the nerve connections for about three years before one’s recovery, assuming the cord isn’t cut, stops.)
There’s one guy who’s very bitter about his situation, even though he’s been a quadriplegic for about 17 years, and many times, takes his anger out on the people around him, even those who help him on a daily basis. He got mad at me several times because Marines have a fraternal relationship with each other than the other branches of the service don’t have, and greet each other with a “Semper Fi!” He was in the Army, and the fact we don’t give that greeting to those from the other branches just wasn’t nice, in his mind. I just told him that he’d just have to deal with it because he joined the wrong club. LOL… I have yet to meet anyone who knows what the Army motto is, if they even have one to begin with. All he does with his life is get high on pot.
Contrast that with another quadriplegic with the same level of injury who has his Master SCUBA license, and travels to various great places to scuba dive.
Years ago, I met and tried to befriend another paraplegic, (paralyzed from the waist down,) who treated his wife like crap, demanding that she wait on him hand and foot, refused to learn the skills needed to be independent, (such as driving a car,) and any time she’d get fed up with it and start to walk out on him, he’d pull a pity routine about how he couldn’t survive without her doing pretty much everything for him, and then blame her for being a very selfish person for complaining about helping him. He’d intentionally made himself helpless as a passive/aggressive method of control over her, and knew just which buttons to push to keep her around as something barely above his personal slave.
Very soon after I was injured, while I was still at the VA hospital in Long Beach, I met a paraplegic who seemed normal enough until I noticed he was missing his little toe, with a scab where his toe should have been. His injury was “complete”, meaning the spinal cord was cut, so he had no movement or sensation below his injury. He got bored one day and decided to cut his toe off… WITH FINGERNAIL CLIPPERS!!! That explained to me why he was on the psych ward of the seven spinal cord injury wards at the Long Beach VA.
I can look at any one of these guys, and thank God that He gave me parents who instilled in me a pride in my independence, a stubborn streak in my personality that makes me keep trying to figure out a way to get this or that done for myself rather than depending on others until and unless it becomes obvious that it’s physically impossible for me, and my having learned the lesson of the pity pot that I can quickly find other’s who have problems far greater than what I have to deal with, including people who are “able bodied” and don’t have the health and physical problems I deal with.
One friend, who now lives in Texas in a group home, has severe paranoid schizophrenia, and though we ended up parting ways many years ago, I saw him a couple of years back, and he’s gotten much worse than when I knew him and would get a call from him in the middle of the night because he thought “the KGB and PLO sympathizers,” were after him, and could he sleep at my place. (For some reason, he’d decided that my house was safe and they couldn’t get him there.) He’d frequently end up in the lockup psych ward at a psych hospital that used to be here in town, and I’d get a call from him every so often when he was out there, telling me he and another mental patient friend of his had escaped, and could I go pick them up. I’d go get them and just drive around for a few hours talking him and his friend into returning to the hospital, and then deliver them back to that lockup ward.
“Courage“, in my book, is when one voluntarily puts him or her self in a dangerous situation in order to protect or help others, not when one deals with the problems that life throws and them, and let’s face it, we ALL have life toss us a problem now and again. Being “tough” is being faced with some hardship life throws at you, and never letting it get to you or complaining about it, but just accepting it and continuing to move on with life, and while I try not to complain too much, I do have my moments where I get very frustrated with the way things are going and do my share of complaining, (this blog being a perfect example of that, although I also want it to serve the purpose of showing just how our government screws over veterans who’ve been injured in their service to our country.) When I’m having a bad day, I usually just find a place where I can be alone and try to get my attitude back on track.
I also believe very firmly that happiness is a choice. We’ve all heard people who have pretty much everything anyone could want complaining about how hard their lives are, (especially the Hollywood crowd these days,) and go on and on about how unhappy they are. Then you have people who have next to nothing, (or literally nothing as with one homeless fellow I knew in Puerto Rico,) who never complain about the negatives they deal with, but always focus on the positives in their life. For some reason, it seems from what I’ve seen through my life, that it’s the people who have more that complain the most about what they don’t have.
So no, I don’t see myself as either especially “brave” or “tough”. I just retreat into my privacy when I’m in a mode where I’d have to find a five gallon bucket and paint it up as a “Pity Pot”, and force people to sit there and listen to me whine. I also have the advantage of having died for some short period of time after I was shot, having met God, and having this weird, inexplicable connection with Him so that I can feel when I am acting in a way that he approves, or behaving in a manner that disappoints, and a great many times when I have a need that gets filled in very unusual ways; so many in fact, that I can not doubt that, for whatever reason, God likes me and watches out for and takes care of me to the point where I don’t worry about many of the issues most people will start to worry about because I KNOW that He will not let me fall, (or at least fall very hard,) if I just relax and do my part in trying to live my life right and trust that He will ALWAYS be there for me, and that over and over and over in my life, I’ve seen how hardships I’ve had to endure end up providing a much greater good for either myself or others than any of the bad I may be dealing with at the moment.
As I said, it’s a matter of perspective, and as I said, I look at my life and situation, and I don’t have to look very far at all to find someone where I can say with all sincerity and gratitude, “There but for the Grace of God go I.”
I’d lost touch with most of them not long after school, so even the ones who did know me when I was paralyzed didn’t know anything about the various health issues I’ve had to deal with, or the VA’s repeated screw ups that made problems worse rather than better. My starting this blog is the first most of them have heard about this stuff, and of course, right now I’m dealing with a pretty major situation.
What’s interesting is that even the people I have kept in touch with, and maybe especially since they’ve been there for all the 30 years of that wonderful government health care provided through the VA, I’ve had a good number of them tell me that they think I’m “tough”, or “brave”, and so on. The problem is that I’m really not.
I didn’t choose to have the problems I’ve had to deal with. Life’s not fair, and I was just dealt the hand I’ve got. It doesn’t take courage to deal with hardships in life that just happen to get thrown your way and make the best of whatever your situation ends up being. It just takes a certain way of looking at life, or perspective.
I don’t have to look very far to see people who are dealing with far greater difficulties than I have, or am at the moment. There are a number of quadriplegics on the ward here at the Spinal Cord Injury unit at this VA, and I’ve got good use of my hands and arms. One fellow that has become a friend is dealing with not only being paralyzed, but terminal cancer. Another, who gets on my nerves, came in for surgery on his shoulder because using your arms for everything isn’t what our shoulder’s are designed for, and it’s very common for the rotator cuff to wear out, but he was admitted four days before his surgery, and even though he’s a paraplegic and can take care of his own bowel care, (the term for digging the shit out of your body,) he just decided it’s pretty gross, and cheerfully had the aids do it for him, so I have to wonder where his self respect is, as well as be amazed at his selfishness in foisting what IS truly a disgusting task off on others, even if it is their job to do this for those who are unable to take care of that on their own.
Another fellow who only became a quadriplegic a couple of years ago has recently been discharged and is now living in a nursing home out in Arizona. (He does HIS own bowel care, even though he has very limited use of his hands and arms, as does everyone else in here who is able.) He needed people to help him smoke, since he doesn’t have the find hand and arm control needed to smoke a cigarette, and so he’d snag another patient who smokes to get the cigarette out of his pack, put it into his mouth, light it for him, and then flick the ash off every so often. I met him when I came in at the very end of 2009 for the six month stay last year that ended with the docs finally doing four surgeries on my leg to repair that bedsore that wouldn’t heal up, and can’t recall a single time he complained about his having broken his neck, (car accident,) or his limitations, but instead working as hard as he could on his rehabilitation. He can stand and walk short distances, (spinal cord injuries to the neck can be weird that way, where the arms and hands end up more disabled than one’s feet and legs,) and hopefully he’ll continue to get more return while his spinal cord continues to regenerate. (The spinal cord will try to regenerate the nerve connections for about three years before one’s recovery, assuming the cord isn’t cut, stops.)
There’s one guy who’s very bitter about his situation, even though he’s been a quadriplegic for about 17 years, and many times, takes his anger out on the people around him, even those who help him on a daily basis. He got mad at me several times because Marines have a fraternal relationship with each other than the other branches of the service don’t have, and greet each other with a “Semper Fi!” He was in the Army, and the fact we don’t give that greeting to those from the other branches just wasn’t nice, in his mind. I just told him that he’d just have to deal with it because he joined the wrong club. LOL… I have yet to meet anyone who knows what the Army motto is, if they even have one to begin with. All he does with his life is get high on pot.
Contrast that with another quadriplegic with the same level of injury who has his Master SCUBA license, and travels to various great places to scuba dive.
Years ago, I met and tried to befriend another paraplegic, (paralyzed from the waist down,) who treated his wife like crap, demanding that she wait on him hand and foot, refused to learn the skills needed to be independent, (such as driving a car,) and any time she’d get fed up with it and start to walk out on him, he’d pull a pity routine about how he couldn’t survive without her doing pretty much everything for him, and then blame her for being a very selfish person for complaining about helping him. He’d intentionally made himself helpless as a passive/aggressive method of control over her, and knew just which buttons to push to keep her around as something barely above his personal slave.
Very soon after I was injured, while I was still at the VA hospital in Long Beach, I met a paraplegic who seemed normal enough until I noticed he was missing his little toe, with a scab where his toe should have been. His injury was “complete”, meaning the spinal cord was cut, so he had no movement or sensation below his injury. He got bored one day and decided to cut his toe off… WITH FINGERNAIL CLIPPERS!!! That explained to me why he was on the psych ward of the seven spinal cord injury wards at the Long Beach VA.
I can look at any one of these guys, and thank God that He gave me parents who instilled in me a pride in my independence, a stubborn streak in my personality that makes me keep trying to figure out a way to get this or that done for myself rather than depending on others until and unless it becomes obvious that it’s physically impossible for me, and my having learned the lesson of the pity pot that I can quickly find other’s who have problems far greater than what I have to deal with, including people who are “able bodied” and don’t have the health and physical problems I deal with.
One friend, who now lives in Texas in a group home, has severe paranoid schizophrenia, and though we ended up parting ways many years ago, I saw him a couple of years back, and he’s gotten much worse than when I knew him and would get a call from him in the middle of the night because he thought “the KGB and PLO sympathizers,” were after him, and could he sleep at my place. (For some reason, he’d decided that my house was safe and they couldn’t get him there.) He’d frequently end up in the lockup psych ward at a psych hospital that used to be here in town, and I’d get a call from him every so often when he was out there, telling me he and another mental patient friend of his had escaped, and could I go pick them up. I’d go get them and just drive around for a few hours talking him and his friend into returning to the hospital, and then deliver them back to that lockup ward.
“Courage“, in my book, is when one voluntarily puts him or her self in a dangerous situation in order to protect or help others, not when one deals with the problems that life throws and them, and let’s face it, we ALL have life toss us a problem now and again. Being “tough” is being faced with some hardship life throws at you, and never letting it get to you or complaining about it, but just accepting it and continuing to move on with life, and while I try not to complain too much, I do have my moments where I get very frustrated with the way things are going and do my share of complaining, (this blog being a perfect example of that, although I also want it to serve the purpose of showing just how our government screws over veterans who’ve been injured in their service to our country.) When I’m having a bad day, I usually just find a place where I can be alone and try to get my attitude back on track.
I also believe very firmly that happiness is a choice. We’ve all heard people who have pretty much everything anyone could want complaining about how hard their lives are, (especially the Hollywood crowd these days,) and go on and on about how unhappy they are. Then you have people who have next to nothing, (or literally nothing as with one homeless fellow I knew in Puerto Rico,) who never complain about the negatives they deal with, but always focus on the positives in their life. For some reason, it seems from what I’ve seen through my life, that it’s the people who have more that complain the most about what they don’t have.
So no, I don’t see myself as either especially “brave” or “tough”. I just retreat into my privacy when I’m in a mode where I’d have to find a five gallon bucket and paint it up as a “Pity Pot”, and force people to sit there and listen to me whine. I also have the advantage of having died for some short period of time after I was shot, having met God, and having this weird, inexplicable connection with Him so that I can feel when I am acting in a way that he approves, or behaving in a manner that disappoints, and a great many times when I have a need that gets filled in very unusual ways; so many in fact, that I can not doubt that, for whatever reason, God likes me and watches out for and takes care of me to the point where I don’t worry about many of the issues most people will start to worry about because I KNOW that He will not let me fall, (or at least fall very hard,) if I just relax and do my part in trying to live my life right and trust that He will ALWAYS be there for me, and that over and over and over in my life, I’ve seen how hardships I’ve had to endure end up providing a much greater good for either myself or others than any of the bad I may be dealing with at the moment.
As I said, it’s a matter of perspective, and as I said, I look at my life and situation, and I don’t have to look very far at all to find someone where I can say with all sincerity and gratitude, “There but for the Grace of God go I.”
Friday, April 8, 2011
4-8-11 update and just a bunch of blathering because I'm kinda high!
Sorry for the long delay in posting an update on my health situation, (for the last three weeks or so, my allergies have been kicking in REAL bad,) but here it is…
The VA has approved paying for the surgery down at UNM Hospital, and I’m just waiting for the paperwork to wiggle it’s way through the all the government red tape when they’ll make an appointment for me to see Dr. “Q” again. I’m assuming at that point he’ll schedule the surgery and tell the VA if he needs newer pictures and scans before doing the surgery.
One funny thing is the automatic messages that get sent back and forth is one that came from the paper pushers here at the VA where they asked if this surgery, (cutting out part of my left pelvis and amputating my left leg,) could be done as day surgery. LOL…
If my Dr, (“E”,) hasn’t heard anything by Monday, he’s going to give a call upstairs and see if he can’t get this process moving. I’ll be staying on the IV antibiotics until a week or so before the surgery, when they’ll stop it so when they do the surgery and send the various samples to the lab, they’ll see what little buggies are in there. Then, Dr. “Q”, (the UNMH ortho surgeon,) said I shouldn’t have to stay at UNMH for more than two or three days before I come back here to the VA to heal up and then start learning how to do things without my left leg attached, (like avoiding falling into the toilet when I go to the bathroom.)
When I went in to see Dr. “Q” for the consult, he said he had a surgical opening for about six weeks out, (mid-April at that time,) and hopefully the wait will be no more, and maybe even less, than that to get this done.
In other news, I had a small bedsore at the top of my right pelvic crest, and a couple days ago, had surgery on that to cut out all the necrotic tissue, and basically, the plastic surgeon, (who previously refused to operate on me because I’d never heal because I’d had radiation treatments,) turned a 2cm X 4cm hole with 2 cm of undermining into a 4cm X 6cm hole with 5cm of undermining that’s been bleeding through the dressings, (I’m on blood thinners,) and messing up my pajama bottoms. They’ll be putting a “wound-vac” on it on Monday which will take care of that problem.
What a “wound-vac” is is a getup where they put this sponge like material into the wound, then cover it with plastic with a small hole cut in it, and what looks kind of like a suction cup with a nipple on it goes over that hole. It creates suction which helps suck the wound closed, draws off excess fluids, and increases the blood flow to the wound to promote healing.
It’s a nice little device, but a pain in the ass since you have to carry around the machine itself, which is about the size of a skinny toaster, and get the hose all arranged properly so it doesn’t get tangled up in the wheels on the chair. I saw the wound today when they changed the dressings and it’s kind of disgusting if you’re squeamish, but it’s all nice red meat in there now rather than the white/grey stuff that was the dead tissue. Hopefully, that will help heal this bedsore up in spite of the terrible mattresses, (called a “Dolphin” mattress,) that we’ve got. I’ve got a much better mattress at home that has 24 horizontal cells down the length of the mattress, and it deflates one out of each three cells alternately so that every four minutes, (the way I have it set up at home,) any area that has pressure on it changes, and no part has pressure on it for more than eight minutes before the pressure is relieved and fresh blood can flow into that part of my body again.
I got this bedsore on my right side after we had a power outage at my apartment one night, (a drunk driver had hit a power pole somewhere down the line,) and I ended up lying on a wire for several hours without knowing it. I was healing it at home just fine by packing the bedsore with what’s called “Aquacil”, (which is like felt when it’s dry, but turns into jelly when as it soaks up fluids coming from the wound,) with just a dressing over that. When I got in here, they decided to switch my treatment out for using a thin strip of gauze soaked in “Dakin’s solution”, (just saline with 5% bleach,) and then covering that with a dressing bandage.
Well, the wound got worse because it was constantly soaked, and the bedsore ended up all macerated, (basically the same thing that happens with trench foot,) and died. Then I talked the into going back to dry dressing, and they started using this tape that was very stiff when dry and packing that into the wound and then covering THAT with a dressing. That helped with the maceration, but irritated the inside of the wound and made the undermining, (where the hole is larger beneath the skin that at the surface,) worse. THEN after several more weeks, I got them to go back to using the aquacil, and… amazingly enough… even with these sucky mattresses, the wound was healing once again instead of getting worse.
That’s when the plastic surgeon, (Dr. “R”, who’d previously been adamant that I’d never heal from ANY surgery because I’d had radiation treatments 27 years ago,) decided that the best way to treat the bedsore was to debride it, and that’s when he turned a small hole with just a bit of undermining into bigger hole with more undermining. Until Monday, they’re just packing it with gauze and covering it with these pads that are like diapers in how much fluid they’ll absorb before becoming saturated and leaking through. So far, I’ve had two pair of my pajama bottoms end up with blood all over them, so the bleeding from the wound hasn’t settle down yet. (Again, I’m on blood thinners.)
What’s the logic behind all this stuff? It’s the VA, and they are entirely inconsistent in just about everything they do, but apparently Dr. “Q” gave these doctors a piece of his mind, (Dr. “E” said when he talked to Dr. “Q”, the latter told him he was impressed with me, I guess because I went in with good questions for him about the procedure, and a good knowledge of the problems I’m dealing with and what needs to be done to fix them,) because all the doctors who were dead set against my having any surgical repairs at all on these problems have had a total attitude change towards me. They’re no longer acting like I’m just some dumb schmuck who doesn’t know what he’s talking about to listening to me and, in the case of the plastic surgeon, deciding that cutting holes in me was the best way to fix this bedsore.
The downside of this surgery I had is that where the wound wasn’t hitting any areas where I can feel much, (my sensation is patchy from the chest down,) it hurts quite a bit, so right now I’m on my max doses of morphine and oxymoron’s and STILL haven’t been able to sleep more than a few hours since the surgery. Past experience with the wound-vac tells me that once they put that on, the pain will go down quite a bit.
Anyway, that’s where things stand right now. I’ve now had 13 surgeries over the past 30 years, (this one was minor, the rest major,) and the partial hemipelvectomy will be #14. And why??? ALL because way back when I was first injured, it took them 6 years to finally do the proper tests that revealed there was a bone chip that had been knocked loose inside my spinal canal when the bullet hit the vertebra. And THEN, after having lost all the movement I’d regained starting within the first week of my injury after being put on military transport planes to fly me to different hospitals with that bone chip in there, (now I have a TINY bit of movement in my left foot, but nothing useful,) they refused to cut the tendons in my legs, (too DRASTIC they said,) when they were dislocating my hips and knees until after they’d destroyed my left hip socket and they had to cut the ball off the femur and leave it permanently dislocated, which ended up with the femur pulling up and creating an area vulnerable to pressure so when I rolled onto my left hip in my sleep, it created that bedsore that wouldn’t heal and then it took the VA more than six years to actually do surgery to fix THAT, (and then only after the infection went septic and they HAD to operate instead of just sending me home like they wanted to.) And of course, amputating my left leg was, again, too drastic, and so when Dr. “W”, head of ortho operated, he missed some of the infection, and it got into my pelvis like I’d wanted to have the leg amputated to avoid, and so here we are!
Ain’t government health care just WONDERFUL! Dr. “Q”, the ortho surgeon down at UNMH, is the FIRST surgeon I’ve dealt with who has the same philosophy as I do, which is to not play tiddlywinks with is kind of stuff, but do what will eventually need to be done anyway BEFORE not doing it causes major damage and requires much MORE drastic surgeries than if they’d just done what I’d asked them to do in the first place. Of course, he’s a civilian doctor, so that explains the difference in attitudes, but going to him for an independent second opinion is probably the smartest move I’ve made in the 30 years that I’ve been dealing with the bullshit I get from doctor’s at the VA.
The thing is that there’s basically two types of doctor’s in the VA system. There are the ones that are very, VERY good, but forego the higher pay they could get in private practice because they truly care about giving veterans the best care they can give, and very, VERY bad ones who couldn’t survive in private practice because they’d get sued out of existence for malpractice.
On a final note, when I was first injured, you couldn’t sue the VA for malpractice. I found out about a month ago that now, you CAN sue, and depending on how much of my pelvis Dr. “Q” ends up having to take out, and how that affects my daily living, I’m seriously considering suing the VA over this screwup where they refused to amputate my leg to prevent the infection from getting into my pelvis. There’s a two year window to file a lawsuit, so I have about 14 more months to decide whether to do that or not. Suing people has always been something distasteful to me, but in this case, if Dr. “Q” has to take out more of my pelvis than I think he will, and my quality of life is seriously affected because of having to have part of my pelvis taken out, I’m strongly considering it.
The thing is that when suing the VA, a jury trial isn’t possible, and instead it goes in front of a federal judge, who tend to give smaller awards for damages, but on the plus side, the cases don’t go through years and years of appeals before any award is given. One fellow in the hospital, (who likes to hang around the Spinal Cord Injury ward for some reason,) had a small black sore appear on his leg one day, and when he came in to see a doctor about it and was told it was nothing and was sent home. It got worse, and all the doctor’s did was to put dressings on it and send him back home. It turned out to be a staph infection, and by the time they were done blowing him off, he had to have his left leg amputated just below the knee. The VA offered him a $40,000 settlement, which he refused, (he was in good health all around before this,) and is now suing for a couple of million plus. He probably won’t get the full amount, but the odds are very high that he’ll get far more than the original settlement offer.
One thing that’s in my corner on that is that the patient advocate here at the hospital just happens to be a member of the same Marine Corps League chapter I’m a member of, (he was a Navy Corpsman during Vietnam,) and has been following my misadventures with the VA from the beginning of last year’s garbage where they wanted to discharge me with an active infection that, had I been at home when it went septic, would have ended up killing me because I wouldn’t have recognized the symptoms until it was too late. So… he’s familiar with this whole thing and can guide me through the process, though if I do file a suit against the VA, once I put in the initial paperwork, he’s out of the loop entirely and it becomes a fight between my lawyers and the VA’s lawyers.
He gave me a business card from his lawyers and they don’t charge a dime unless they win the case, and then take the 30% or so as their fee. Suing the VA for malpractice is ALL these guys do, and they have their own team of medical experts to tell them if a case is winnable or not, but I won’t end up stuck with big legal fees just to get the process started if I go that route.
Again, sorry for the delay on this update, but besides things being in a sort of limbo for awhile, and nothing really new to report until a few days ago when the VA approved the payment to UNMH for this surgery, I’ve had a horrendous time for the past several weeks with allergies from one of the trees putting out record amounts of pollen and I had not only the runny nose and sinus congestion, but really bad chest congestion as well, and besides not feeling good, between that and the energy this infection sucks out of me, I had NO energy to do much of anything. They even had me on oxygen whenever I was in bed, (most of the time,) and getting regular nebulizer treatments to try to open up the passages in my lungs. My oxygen saturation, which is normally around 95% dropped to 80% and sometimes even lower.
So, except for the delays due to government red tape, things are still clicking along my way, and if things go as well as possible, after this surgery, I’ll be able to get off all the narcotic drugs I’m on for spasms and pain now, and see if I can’t get the FAA to approve my medical again and get my pilot’s license renewed. If THAT happens, once I get my debts paid off and trade my car in for a truck, (I have a new wheelchair with power assist wheels that’s too heavy to haul into the car, so I’m going to get a Ford F-150 4X4 truck with the extended cab and the VA will put in a lift that picks the chair up and puts it behind the seat,) then I start saving up to buy myself a Cessna 177 Cardinal airplane. If it doesn’t, and it’s kind of a longshot, then once everything’s paid off and I’ve got my truck, I’ll be saving up to build a house.
If I get a 177 Cardinal with long range tanks, (or have them installed if they’re not already there,) then it has enough range for me to be able to fly from Florida to Puerto Rico to visit my step daughter and friends I’ve got out there whenever I want, and NOT have to go through the feel-up pat-downs you have to go through when you fly commercial these days. Then I can get back to traveling here and there when the mood strikes me, and won’t have to have a lineman take apart and stow my wheelchair in the baggage compartment of the Cessna 172’s like I always did before when I was having so much fun flying here and there to visit friends. (The 172 has a short door and wing strut that won’t allow it to open past about 45 degrees, while the 177, besides being a bit of a higher performance plane, has a door that’s about four feet long and no wing strut so the door will open up to about 80 degrees, which will allow me to put the wheelchair in behind the seat like I do with my car.)
With the way everything's been suddenly clicking my way on all this stuff, I'm really hoping for a very positive outcome on this surgery, and a return to an active lifestyle like I was able to enjoy before I got that stupid bedsore that the doctor's, both out in Puerto Rico and here, just didn't want to treat. One thing I'm sure of is that all the prayers that have gone up for me from y'all have helped turn this situation around, so please keep 'em coming! :-)
The VA has approved paying for the surgery down at UNM Hospital, and I’m just waiting for the paperwork to wiggle it’s way through the all the government red tape when they’ll make an appointment for me to see Dr. “Q” again. I’m assuming at that point he’ll schedule the surgery and tell the VA if he needs newer pictures and scans before doing the surgery.
One funny thing is the automatic messages that get sent back and forth is one that came from the paper pushers here at the VA where they asked if this surgery, (cutting out part of my left pelvis and amputating my left leg,) could be done as day surgery. LOL…
If my Dr, (“E”,) hasn’t heard anything by Monday, he’s going to give a call upstairs and see if he can’t get this process moving. I’ll be staying on the IV antibiotics until a week or so before the surgery, when they’ll stop it so when they do the surgery and send the various samples to the lab, they’ll see what little buggies are in there. Then, Dr. “Q”, (the UNMH ortho surgeon,) said I shouldn’t have to stay at UNMH for more than two or three days before I come back here to the VA to heal up and then start learning how to do things without my left leg attached, (like avoiding falling into the toilet when I go to the bathroom.)
When I went in to see Dr. “Q” for the consult, he said he had a surgical opening for about six weeks out, (mid-April at that time,) and hopefully the wait will be no more, and maybe even less, than that to get this done.
In other news, I had a small bedsore at the top of my right pelvic crest, and a couple days ago, had surgery on that to cut out all the necrotic tissue, and basically, the plastic surgeon, (who previously refused to operate on me because I’d never heal because I’d had radiation treatments,) turned a 2cm X 4cm hole with 2 cm of undermining into a 4cm X 6cm hole with 5cm of undermining that’s been bleeding through the dressings, (I’m on blood thinners,) and messing up my pajama bottoms. They’ll be putting a “wound-vac” on it on Monday which will take care of that problem.
What a “wound-vac” is is a getup where they put this sponge like material into the wound, then cover it with plastic with a small hole cut in it, and what looks kind of like a suction cup with a nipple on it goes over that hole. It creates suction which helps suck the wound closed, draws off excess fluids, and increases the blood flow to the wound to promote healing.
It’s a nice little device, but a pain in the ass since you have to carry around the machine itself, which is about the size of a skinny toaster, and get the hose all arranged properly so it doesn’t get tangled up in the wheels on the chair. I saw the wound today when they changed the dressings and it’s kind of disgusting if you’re squeamish, but it’s all nice red meat in there now rather than the white/grey stuff that was the dead tissue. Hopefully, that will help heal this bedsore up in spite of the terrible mattresses, (called a “Dolphin” mattress,) that we’ve got. I’ve got a much better mattress at home that has 24 horizontal cells down the length of the mattress, and it deflates one out of each three cells alternately so that every four minutes, (the way I have it set up at home,) any area that has pressure on it changes, and no part has pressure on it for more than eight minutes before the pressure is relieved and fresh blood can flow into that part of my body again.
I got this bedsore on my right side after we had a power outage at my apartment one night, (a drunk driver had hit a power pole somewhere down the line,) and I ended up lying on a wire for several hours without knowing it. I was healing it at home just fine by packing the bedsore with what’s called “Aquacil”, (which is like felt when it’s dry, but turns into jelly when as it soaks up fluids coming from the wound,) with just a dressing over that. When I got in here, they decided to switch my treatment out for using a thin strip of gauze soaked in “Dakin’s solution”, (just saline with 5% bleach,) and then covering that with a dressing bandage.
Well, the wound got worse because it was constantly soaked, and the bedsore ended up all macerated, (basically the same thing that happens with trench foot,) and died. Then I talked the into going back to dry dressing, and they started using this tape that was very stiff when dry and packing that into the wound and then covering THAT with a dressing. That helped with the maceration, but irritated the inside of the wound and made the undermining, (where the hole is larger beneath the skin that at the surface,) worse. THEN after several more weeks, I got them to go back to using the aquacil, and… amazingly enough… even with these sucky mattresses, the wound was healing once again instead of getting worse.
That’s when the plastic surgeon, (Dr. “R”, who’d previously been adamant that I’d never heal from ANY surgery because I’d had radiation treatments 27 years ago,) decided that the best way to treat the bedsore was to debride it, and that’s when he turned a small hole with just a bit of undermining into bigger hole with more undermining. Until Monday, they’re just packing it with gauze and covering it with these pads that are like diapers in how much fluid they’ll absorb before becoming saturated and leaking through. So far, I’ve had two pair of my pajama bottoms end up with blood all over them, so the bleeding from the wound hasn’t settle down yet. (Again, I’m on blood thinners.)
What’s the logic behind all this stuff? It’s the VA, and they are entirely inconsistent in just about everything they do, but apparently Dr. “Q” gave these doctors a piece of his mind, (Dr. “E” said when he talked to Dr. “Q”, the latter told him he was impressed with me, I guess because I went in with good questions for him about the procedure, and a good knowledge of the problems I’m dealing with and what needs to be done to fix them,) because all the doctors who were dead set against my having any surgical repairs at all on these problems have had a total attitude change towards me. They’re no longer acting like I’m just some dumb schmuck who doesn’t know what he’s talking about to listening to me and, in the case of the plastic surgeon, deciding that cutting holes in me was the best way to fix this bedsore.
The downside of this surgery I had is that where the wound wasn’t hitting any areas where I can feel much, (my sensation is patchy from the chest down,) it hurts quite a bit, so right now I’m on my max doses of morphine and oxymoron’s and STILL haven’t been able to sleep more than a few hours since the surgery. Past experience with the wound-vac tells me that once they put that on, the pain will go down quite a bit.
Anyway, that’s where things stand right now. I’ve now had 13 surgeries over the past 30 years, (this one was minor, the rest major,) and the partial hemipelvectomy will be #14. And why??? ALL because way back when I was first injured, it took them 6 years to finally do the proper tests that revealed there was a bone chip that had been knocked loose inside my spinal canal when the bullet hit the vertebra. And THEN, after having lost all the movement I’d regained starting within the first week of my injury after being put on military transport planes to fly me to different hospitals with that bone chip in there, (now I have a TINY bit of movement in my left foot, but nothing useful,) they refused to cut the tendons in my legs, (too DRASTIC they said,) when they were dislocating my hips and knees until after they’d destroyed my left hip socket and they had to cut the ball off the femur and leave it permanently dislocated, which ended up with the femur pulling up and creating an area vulnerable to pressure so when I rolled onto my left hip in my sleep, it created that bedsore that wouldn’t heal and then it took the VA more than six years to actually do surgery to fix THAT, (and then only after the infection went septic and they HAD to operate instead of just sending me home like they wanted to.) And of course, amputating my left leg was, again, too drastic, and so when Dr. “W”, head of ortho operated, he missed some of the infection, and it got into my pelvis like I’d wanted to have the leg amputated to avoid, and so here we are!
Ain’t government health care just WONDERFUL! Dr. “Q”, the ortho surgeon down at UNMH, is the FIRST surgeon I’ve dealt with who has the same philosophy as I do, which is to not play tiddlywinks with is kind of stuff, but do what will eventually need to be done anyway BEFORE not doing it causes major damage and requires much MORE drastic surgeries than if they’d just done what I’d asked them to do in the first place. Of course, he’s a civilian doctor, so that explains the difference in attitudes, but going to him for an independent second opinion is probably the smartest move I’ve made in the 30 years that I’ve been dealing with the bullshit I get from doctor’s at the VA.
The thing is that there’s basically two types of doctor’s in the VA system. There are the ones that are very, VERY good, but forego the higher pay they could get in private practice because they truly care about giving veterans the best care they can give, and very, VERY bad ones who couldn’t survive in private practice because they’d get sued out of existence for malpractice.
On a final note, when I was first injured, you couldn’t sue the VA for malpractice. I found out about a month ago that now, you CAN sue, and depending on how much of my pelvis Dr. “Q” ends up having to take out, and how that affects my daily living, I’m seriously considering suing the VA over this screwup where they refused to amputate my leg to prevent the infection from getting into my pelvis. There’s a two year window to file a lawsuit, so I have about 14 more months to decide whether to do that or not. Suing people has always been something distasteful to me, but in this case, if Dr. “Q” has to take out more of my pelvis than I think he will, and my quality of life is seriously affected because of having to have part of my pelvis taken out, I’m strongly considering it.
The thing is that when suing the VA, a jury trial isn’t possible, and instead it goes in front of a federal judge, who tend to give smaller awards for damages, but on the plus side, the cases don’t go through years and years of appeals before any award is given. One fellow in the hospital, (who likes to hang around the Spinal Cord Injury ward for some reason,) had a small black sore appear on his leg one day, and when he came in to see a doctor about it and was told it was nothing and was sent home. It got worse, and all the doctor’s did was to put dressings on it and send him back home. It turned out to be a staph infection, and by the time they were done blowing him off, he had to have his left leg amputated just below the knee. The VA offered him a $40,000 settlement, which he refused, (he was in good health all around before this,) and is now suing for a couple of million plus. He probably won’t get the full amount, but the odds are very high that he’ll get far more than the original settlement offer.
One thing that’s in my corner on that is that the patient advocate here at the hospital just happens to be a member of the same Marine Corps League chapter I’m a member of, (he was a Navy Corpsman during Vietnam,) and has been following my misadventures with the VA from the beginning of last year’s garbage where they wanted to discharge me with an active infection that, had I been at home when it went septic, would have ended up killing me because I wouldn’t have recognized the symptoms until it was too late. So… he’s familiar with this whole thing and can guide me through the process, though if I do file a suit against the VA, once I put in the initial paperwork, he’s out of the loop entirely and it becomes a fight between my lawyers and the VA’s lawyers.
He gave me a business card from his lawyers and they don’t charge a dime unless they win the case, and then take the 30% or so as their fee. Suing the VA for malpractice is ALL these guys do, and they have their own team of medical experts to tell them if a case is winnable or not, but I won’t end up stuck with big legal fees just to get the process started if I go that route.
Again, sorry for the delay on this update, but besides things being in a sort of limbo for awhile, and nothing really new to report until a few days ago when the VA approved the payment to UNMH for this surgery, I’ve had a horrendous time for the past several weeks with allergies from one of the trees putting out record amounts of pollen and I had not only the runny nose and sinus congestion, but really bad chest congestion as well, and besides not feeling good, between that and the energy this infection sucks out of me, I had NO energy to do much of anything. They even had me on oxygen whenever I was in bed, (most of the time,) and getting regular nebulizer treatments to try to open up the passages in my lungs. My oxygen saturation, which is normally around 95% dropped to 80% and sometimes even lower.
So, except for the delays due to government red tape, things are still clicking along my way, and if things go as well as possible, after this surgery, I’ll be able to get off all the narcotic drugs I’m on for spasms and pain now, and see if I can’t get the FAA to approve my medical again and get my pilot’s license renewed. If THAT happens, once I get my debts paid off and trade my car in for a truck, (I have a new wheelchair with power assist wheels that’s too heavy to haul into the car, so I’m going to get a Ford F-150 4X4 truck with the extended cab and the VA will put in a lift that picks the chair up and puts it behind the seat,) then I start saving up to buy myself a Cessna 177 Cardinal airplane. If it doesn’t, and it’s kind of a longshot, then once everything’s paid off and I’ve got my truck, I’ll be saving up to build a house.
If I get a 177 Cardinal with long range tanks, (or have them installed if they’re not already there,) then it has enough range for me to be able to fly from Florida to Puerto Rico to visit my step daughter and friends I’ve got out there whenever I want, and NOT have to go through the feel-up pat-downs you have to go through when you fly commercial these days. Then I can get back to traveling here and there when the mood strikes me, and won’t have to have a lineman take apart and stow my wheelchair in the baggage compartment of the Cessna 172’s like I always did before when I was having so much fun flying here and there to visit friends. (The 172 has a short door and wing strut that won’t allow it to open past about 45 degrees, while the 177, besides being a bit of a higher performance plane, has a door that’s about four feet long and no wing strut so the door will open up to about 80 degrees, which will allow me to put the wheelchair in behind the seat like I do with my car.)
With the way everything's been suddenly clicking my way on all this stuff, I'm really hoping for a very positive outcome on this surgery, and a return to an active lifestyle like I was able to enjoy before I got that stupid bedsore that the doctor's, both out in Puerto Rico and here, just didn't want to treat. One thing I'm sure of is that all the prayers that have gone up for me from y'all have helped turn this situation around, so please keep 'em coming! :-)
Saturday, March 5, 2011
GREAT news from on the 2nd opinion, along with a bitchfest about my temporary doc.
I went down to see Dr. “Q” today, and things couldn’t have gone better!
Another Dr. came into the exam room first, (apparently an intern or assistant to Dr. “Q”,) and after we talked for a few minutes, he said he didn’t think Dr. “Q” would agree to do the surgery, especially since he said the hemipelvectomy has a 60% mortality rate. This figure rocked me back on my heels, (figuratively speaking,) since it’s so much higher than anything I’d found previously in my researching this surgery on the ‘net. He left and after a few minutes, he returned with Dr. “Q”.
We talked again for a few minutes, and since he was already answering some of the questions I’d prepared, I just gave him my notebook with the things I wanted him to know about me and the list of questions I had for him. He went through the list, addressing each of my statements and answering all of my questions clearly and concisely.
Then came the good news…
He said that if I wanted the surgery done, he’d be happy to do it; that in my case, since I’m in good health other than this infection, the mortality rate I could expect would be 1-3%, that the radiation treatments I’d had so long back weren’t even a factor, that he was pretty sure he wouldn’t have to remove all of the left half of my pelvis, that I’d be out of the hospital, (I’m sure referring to UNMH and getting back here for my recovery,) in a day or two, and that my chances of getting back in the wheelchair are 100%.
In simpler terms, everything the expert in hemipelvectomies said is diametrically opposed to what the chief of ortho here at the VA has said. He strongly approved of getting the surgery done now rather than waiting for the infection to spread, that it WOULD cross to the other side of my pelvis and into my spine eventually, (the ortho chief here said it wouldn’t be able to get through the thin covering of the bones,) and that getting a partial hemipelvectomy done now would prevent a total hemipelvectomy, or even total pelvectomy, (where they cut me in half above the pelvis,) later.
Dr. “E”, (my regular Dr.,) started a vacation today and won’t be back until the 14th, but he’s already OK’d me getting a new set of scans 6 weeks after the previous set, which will be in two weeks, and Dr. “Q” said to get that done and then bring him back the original disk of scans I gave to him, (he returned that to me to hold on to, but kept the reports I gave to him,) and get the new scans burned onto a disk and bring both back to him when I get them done so he can take a look at the condition of this infection immediately after they do the new scans.
He said he could do the surgery as early as mid-April, but I want to get that second set of scans and have him talk with my doctor, (Dr. “E”,) to get everything coordinated between the VA and UNMH for this surgery, as well as get that second set of scans done. The antibiotics I’m on are very powerful ones, and my blood work indicates they’ve done a good job of knocking the infection back, but they’re not something I could have at home since the most powerful one is administered via IV twice a day. If I didn’t have the surgery, I’d be taking oral antibiotics that wouldn’t be as effective both because they’d be taken by mouth rather than going directly into my bloodstream and they’re not as powerful as the vancomycin IV antibiotics I’m on now.
Given all of this, I’ve decided I’m definitely going to have this surgery done. What a difference between dealing with the VA doctors and a civilian one!
A perfect example is the doctor who’s assigned to me while my Dr. “E” is on vacation. I’ll call him Dr. “S”. The last time I was in, he was my doctor for a few weeks after Dr. “P” retired and Dr. “E” got moved to the spinal cord unit, and he kept insisting that I needed to start using an internal catheter rather than the externals I use now. He even put an order in for me to have one put in AFTER I’d refused his insistence for over a week and didn’t bother to even talk to me about it. I refused it and he got upset with me for not following his orders, in spite of the fact that the only result would be guaranteeing that I’d end up with bladder infections.
Well, he asked what Dr. “Q” had said in our consult today, and when I told him, he said that he could hardly wait to talk to him and read his notes. He’s going to be my doctor for exactly 9 days, and wants to be the one making the decisions in this??? I told him that I’d already told Dr. “Q” that I’d be having Dr. “E”, (my regular doctor,) call him after he got back from vacation.
Then this jackass tells me that he’s changed my IV times from 9 AM and 9PM to 7 AM and 7 PM. I asked him why, and he told me that it was because it would be more convenient for me, even though he never spoke to me about this at all. I told him that it would definitely NOT be more convenient, and we argued about it until I got him to put it back to 9 AM and 9 PM.
Then he tells me that what he’d really like to do is STOP all my antibiotics for ten days or so and try to get a culture of the infection so they could find out what it is. They’ve already done that, and it’s a staph infection, but this brilliant idea is basically, “let’s let the infection get back up to full strength, (and destructiveness,) again so can try to get a sample of it, even though the small hole in my groin area that it WAS draining through has apparently closed off and there hasn’t been any drainage from it since we stopped putting the gauze in there, and so there’s no way to GET a sample anymore.
Then he pulled another dumbfuck move. For the past week or so, Dr. “E” had reduced the dosage of the vancomycin IV because it was building up in my system faster than my system could get rid of it. When they hung the IV last night, I noticed that there was more fluid in the bag than has been the case over the past week, and when I looked at the IV machine, sure enough, he’s bumped it back up to it’s previous level for some reason, even though he KNOWS it was building up too much in my system. (I can tell because it gets infused over two hours, regardless of dosage, and the rate of infusion was back up again.)
Who the hell takes over for another doctor while that doctor goes on vacation for nine days and immediately starts changing all that other doctor’s orders for treatment? He’s been wrong on damned near everything he’s wanted done, not wanted done, predicted, etc., (he’s one of the doctors that STILL insists that because I had the radiation treatments on the hip more than 25 years ago, any surgery on it will never heal, even though he SAW the surgery from last year heal just as I’d predicted it would.)
I’m seriously starting to think that, to him, his patients are all just subjects for him to experiment on and see what happens when he does this or doesn’t do that. He doesn’t talk about any changes to treatment he wants to make beforehand to get the patient’s input, but just makes changes arbitrarily, doesn’t keep up with what’s going on before he decides this or that might be a nice experiment, (such as his idea of just stopping the antibiotics to get a sample of the infection for the labs when there’s no access to the infection anymore without doing surgery that he doesn’t want done because the patient that healed up perfectly from every surgery ever done on him won’t ever heal,) and doesn’t listen to what his patients have to say, even though in cases such as mine, where I’ve been doing this stuff long enough, I’m familiar with just about everything they might do, and know what will and won’t work.
I’ll say it again… This is typical of the government health care that all those lib-dipsy’s who’ve never experienced it want EVERYONE to have. There are two types of doctor’s in the VA system. Good ones who are willing to take the lower pay than they could get in private practice because they genuinely care about helping veterans out, and the ones who couldn’t survive in private practice because they’d be sued out of existence due to malpractice. Most of the docs are good ones, but there’s that 10% that fall into the latter category that end up in the chain somewhere to really screw things up for the patients.
The 14th can’t get here fast enough so I can get MY doctor back, and I’m guessing he’s not going to be very happy with all the changes Dr. “S” has made to the regimen of care for his patients in his absence.
When it does, I can get the ball rolling on getting those scans done again and getting the surgery scheduled BEFORE things go from bad to disastrous yet again!
Another Dr. came into the exam room first, (apparently an intern or assistant to Dr. “Q”,) and after we talked for a few minutes, he said he didn’t think Dr. “Q” would agree to do the surgery, especially since he said the hemipelvectomy has a 60% mortality rate. This figure rocked me back on my heels, (figuratively speaking,) since it’s so much higher than anything I’d found previously in my researching this surgery on the ‘net. He left and after a few minutes, he returned with Dr. “Q”.
We talked again for a few minutes, and since he was already answering some of the questions I’d prepared, I just gave him my notebook with the things I wanted him to know about me and the list of questions I had for him. He went through the list, addressing each of my statements and answering all of my questions clearly and concisely.
Then came the good news…
He said that if I wanted the surgery done, he’d be happy to do it; that in my case, since I’m in good health other than this infection, the mortality rate I could expect would be 1-3%, that the radiation treatments I’d had so long back weren’t even a factor, that he was pretty sure he wouldn’t have to remove all of the left half of my pelvis, that I’d be out of the hospital, (I’m sure referring to UNMH and getting back here for my recovery,) in a day or two, and that my chances of getting back in the wheelchair are 100%.
In simpler terms, everything the expert in hemipelvectomies said is diametrically opposed to what the chief of ortho here at the VA has said. He strongly approved of getting the surgery done now rather than waiting for the infection to spread, that it WOULD cross to the other side of my pelvis and into my spine eventually, (the ortho chief here said it wouldn’t be able to get through the thin covering of the bones,) and that getting a partial hemipelvectomy done now would prevent a total hemipelvectomy, or even total pelvectomy, (where they cut me in half above the pelvis,) later.
Dr. “E”, (my regular Dr.,) started a vacation today and won’t be back until the 14th, but he’s already OK’d me getting a new set of scans 6 weeks after the previous set, which will be in two weeks, and Dr. “Q” said to get that done and then bring him back the original disk of scans I gave to him, (he returned that to me to hold on to, but kept the reports I gave to him,) and get the new scans burned onto a disk and bring both back to him when I get them done so he can take a look at the condition of this infection immediately after they do the new scans.
He said he could do the surgery as early as mid-April, but I want to get that second set of scans and have him talk with my doctor, (Dr. “E”,) to get everything coordinated between the VA and UNMH for this surgery, as well as get that second set of scans done. The antibiotics I’m on are very powerful ones, and my blood work indicates they’ve done a good job of knocking the infection back, but they’re not something I could have at home since the most powerful one is administered via IV twice a day. If I didn’t have the surgery, I’d be taking oral antibiotics that wouldn’t be as effective both because they’d be taken by mouth rather than going directly into my bloodstream and they’re not as powerful as the vancomycin IV antibiotics I’m on now.
Given all of this, I’ve decided I’m definitely going to have this surgery done. What a difference between dealing with the VA doctors and a civilian one!
A perfect example is the doctor who’s assigned to me while my Dr. “E” is on vacation. I’ll call him Dr. “S”. The last time I was in, he was my doctor for a few weeks after Dr. “P” retired and Dr. “E” got moved to the spinal cord unit, and he kept insisting that I needed to start using an internal catheter rather than the externals I use now. He even put an order in for me to have one put in AFTER I’d refused his insistence for over a week and didn’t bother to even talk to me about it. I refused it and he got upset with me for not following his orders, in spite of the fact that the only result would be guaranteeing that I’d end up with bladder infections.
Well, he asked what Dr. “Q” had said in our consult today, and when I told him, he said that he could hardly wait to talk to him and read his notes. He’s going to be my doctor for exactly 9 days, and wants to be the one making the decisions in this??? I told him that I’d already told Dr. “Q” that I’d be having Dr. “E”, (my regular doctor,) call him after he got back from vacation.
Then this jackass tells me that he’s changed my IV times from 9 AM and 9PM to 7 AM and 7 PM. I asked him why, and he told me that it was because it would be more convenient for me, even though he never spoke to me about this at all. I told him that it would definitely NOT be more convenient, and we argued about it until I got him to put it back to 9 AM and 9 PM.
Then he tells me that what he’d really like to do is STOP all my antibiotics for ten days or so and try to get a culture of the infection so they could find out what it is. They’ve already done that, and it’s a staph infection, but this brilliant idea is basically, “let’s let the infection get back up to full strength, (and destructiveness,) again so can try to get a sample of it, even though the small hole in my groin area that it WAS draining through has apparently closed off and there hasn’t been any drainage from it since we stopped putting the gauze in there, and so there’s no way to GET a sample anymore.
Then he pulled another dumbfuck move. For the past week or so, Dr. “E” had reduced the dosage of the vancomycin IV because it was building up in my system faster than my system could get rid of it. When they hung the IV last night, I noticed that there was more fluid in the bag than has been the case over the past week, and when I looked at the IV machine, sure enough, he’s bumped it back up to it’s previous level for some reason, even though he KNOWS it was building up too much in my system. (I can tell because it gets infused over two hours, regardless of dosage, and the rate of infusion was back up again.)
Who the hell takes over for another doctor while that doctor goes on vacation for nine days and immediately starts changing all that other doctor’s orders for treatment? He’s been wrong on damned near everything he’s wanted done, not wanted done, predicted, etc., (he’s one of the doctors that STILL insists that because I had the radiation treatments on the hip more than 25 years ago, any surgery on it will never heal, even though he SAW the surgery from last year heal just as I’d predicted it would.)
I’m seriously starting to think that, to him, his patients are all just subjects for him to experiment on and see what happens when he does this or doesn’t do that. He doesn’t talk about any changes to treatment he wants to make beforehand to get the patient’s input, but just makes changes arbitrarily, doesn’t keep up with what’s going on before he decides this or that might be a nice experiment, (such as his idea of just stopping the antibiotics to get a sample of the infection for the labs when there’s no access to the infection anymore without doing surgery that he doesn’t want done because the patient that healed up perfectly from every surgery ever done on him won’t ever heal,) and doesn’t listen to what his patients have to say, even though in cases such as mine, where I’ve been doing this stuff long enough, I’m familiar with just about everything they might do, and know what will and won’t work.
I’ll say it again… This is typical of the government health care that all those lib-dipsy’s who’ve never experienced it want EVERYONE to have. There are two types of doctor’s in the VA system. Good ones who are willing to take the lower pay than they could get in private practice because they genuinely care about helping veterans out, and the ones who couldn’t survive in private practice because they’d be sued out of existence due to malpractice. Most of the docs are good ones, but there’s that 10% that fall into the latter category that end up in the chain somewhere to really screw things up for the patients.
The 14th can’t get here fast enough so I can get MY doctor back, and I’m guessing he’s not going to be very happy with all the changes Dr. “S” has made to the regimen of care for his patients in his absence.
When it does, I can get the ball rolling on getting those scans done again and getting the surgery scheduled BEFORE things go from bad to disastrous yet again!
Friday, March 4, 2011
Getting 2nd opinion on surgery later today.
Well, my daily update has been turned on it’s head since I haven’t been able to update my blog on a daily basis, but I do want to continue to keep a record of the way the V.A. deals with our vets, primarily using my own experience, but also occasionally relating those of others I have met and meet while in the hospital.
This update is late because I had to go through my records to pull out the relevant documents for the doctor, (I’ll call him Dr. “Q“,) I’m seeing later this morning, (Friday,) morning to get an outside opinion on what to do with this infection in my left thigh and pelvis. These records are only those from my last admission, (Dec. 29th, 2009 through June 24th of 2010,) and this, (I came in for a check with my doctor on Jan 26th and was admitted on the 31st,) but came to around 2,100 pages long.
I’ve been going through all these records to pull the relevant documents out to give to Dr. “Q” so he has the information he needs to give me a good opinion on whether or not to have surgery to cut out the left half of my pelvis, (which would take the leg with it, of course,) and try to get rid of this whole bone infection mess once and for all, or go on a lifelong course of antibiotics to try to slow down how fast it spreads and ultimately dissolves my pelvis.
If I repeat certain things here, please forgive me, but I’m going to try to cover all the factors I’m having to weigh as I make this decision.
For a brief recount of the history behind this, on the night before Thanksgiving, 2009, I rolled onto my left side in my sleep and the pain that would normally wake me up just didn’t for some reason, and I ended up lying on that side all night long. That hip was really screwed up because of having to have the ball cut off the femur way back in the very early 1980’s after my spasms dislocated, and totally destroyed the socket, on my left hip. I woke up with the bedding soaked with blood and a brand new bedsore on that hip.
I went in to the VA out there in Puerto Rico, (where I was living at the time,) as soon as I could, and had they done the surgery to repair that bedsore back then, all the subsequent problems I’ve had with my left thigh and pelvis since then could have been avoided, but the plastic surgeon, (who was an outside contracted doctor to the V.A., but normally did boob jobs, lyposuction, lip poofs, and so on in his regular practice,) turned out to be a total asshole of major proportions, and after three and a half years of putting repair surgery off, with me bouncing in and out of the hospital as complications developed, ended up telling me, “I wouldn’t operate on you if your life depended on it!” That’s a whole other story, but that was what made me decide to move back here to Albuquerque to try to get treatment here at this V.A. hospital for it.
They waited another two and a half years before admitting me to treat the bedsore, and even though I was dealing with a massive infection of the bone and soft tissues in my left thigh and femur, ultimately refused to do anything and were going to discharge me until, four days after they’d made that decision, the infection went septic, and “no, No, NO!,” turned into, “now, Now, NOW!”
I wanted them to just cut the leg off to prevent any infection from getting into my pelvis, but as has happened many times before that, they refused because they considered that to be “too drastic.” Back when the spasms were ripping my hips and knees apart, I developed bone growing in the soft tissues of that hip and had to go through pretty intensive radiation treatments to stop that growth, and in spite of having had at least two, and if I recall correctly, three surgeries on that hip immediately after the radiation treatments, and everything healing up both quickly and well, they decided that any surgery they did would never, EVER heal because that area had been irradiated in the past.
They ended up doing four surgeries in two weeks after things went septic to cut out all the infected bone and tissue, and surprise, surprise, the big hole they left in my hip, (about five inches long, three wide, and an inch deep overall with a crevasse down the center that was at least three inches deep filled in and healed up completely and perfectly in about seven weeks.
Looking through all the records, the same doctors who were declaring that any surgical wound would never heal before said exactly the same thing this time about doing any surgical repair for this infection I’m dealing with now. (They hadn’t quite gotten all the infected stuff out last time and it started up again, spreading halfway down my left thigh and into my pelvis, and in just seven months, ate completely through the front pelvic bone, which is about between one and two inches thick and four inches long, as well as eating away more of what remained of my left femur that they’d cut the top six inches or so off of in those four surgeries last year.)
Needless to say, this is a VERY aggressive infection, (staph infection,) so if I don’t have this surgery done, and just try to control it with antibiotics, it may slow it’s progression down, but it won’t stop it spreading or the deterioration of the bone in my pelvis that it’s doing.
This would lead to one of several problems down the road eventually. Either it would weaken my pelvis to where it would break when I take a fall out of my wheelchair and, with all the major blood vessels that run through the pelvis, have a good chance of cutting my femoral artery and I’d bleed out in just a few minutes and die.
Another possibility is that it would end up with a break in the pelvis, but NOT cut any of the big blood vessels, and they’d end up having to cut out half my pelvis anyway, or if the infection spreads to both sides, cutting out the entire pelvis and I’d be cut in half at the waist.
A third possibility is that the infection would go septic again at some point, and if I didn’t recognize the symptoms quickly enough, a systemic staph infection will kill you in just two or three days.
Another possibility is that the infection would continue to spread through the bones and soft tissues until it is in my spine as well, and far enough up my trunk that even cutting me in half at the waist wouldn’t get rid of it and I’d just be waiting to die of the staph infection shutting down my organs as it reached them.
The last possibility is that the infection would get into my spine and eat that way and I’d end up getting cut in half at the waist.
As you can see, not getting this surgery done now to take out half my pelvis leaves me facing a slow, but inevitable, SUPER major surgery, (at best,) that would leave me bedridden in a nursing home for the rest of my life. The only question is how long would that take.
The alternative is getting half my pelvis cut out now, which is dangerous to begin with. The only study I found on hemipelvectomies done on spinal cord injured patients with massive infection of the bone and soft tissues shows a 25% mortality rate from the surgery alone, but doesn’t have any information on the general health of the patients involved, so I believe my survival rate would be better than that because I’m still in pretty good health outside of the problems caused by this infection.
The possibilities, (assuming the surgery is successful,) are that I’d get my quality of life back to a certain degree, even though I’d have to relearn how to do a lot of stuff because of having half my pelvis removed. (One common problem I found on several sites devoted to people who’ve had hemipelvectomies, though all of them are people who had bone cancer, or else some terrible accident that crushed half their pelvis, was that they tend to fall into the toilet until they get used to having a lower body only half as wide as it previously was. LOL…)
The other is the risk that I’d never be able to get back into the wheelchair again because of balance problems and I’d end up stuck in bed in a nursing home for the rest of my life.
Looking at the things said by these people who’ve had the surgery done, though, shows them getting an artificial leg, (don’t ask me how they end up using it, since there’s no stump to attach it to,) using crutches to get around, or, (the most common if they’re going to be out and about for any length of time,) using a wheelchair. (I DO have just a LITTLE bit of experience with this one, and I’m really not seeing why it wouldn’t be possible since, with the severity of my spinal curvature, (scoliosis,) my pelvis is tilted 45 to 50 degrees as it is, and I already sit on my right buttocks, with almost zero weight on my left buttocks, already.
EVERYONE I’ve talked to who’s known me since, or shortly after, I was shot has said to get the surgery done, and I’m tending to agree that, given my options, that’s the best choice I’ve got.
I have an appointment in the morning with the only doctor in New Mexico who does the hemipelvectomy surgeries, (he works at UNM Hospital,) and he’s the surgeon they’d send me to anyway if I decide to get this done.
A funny thing happened when I called to make the appointment for this consult with him in that I totally forgot to tell the secretary that I’m paralyzed. She’d said something about my needing a special little card to put on my dash board to park in the patient parking, and I just said that wouldn’t be a problem since I’ve got the handicapped parking placard, but it didn’t even occur to me that she would be thinking I could walk. I went down to drop off the medical records and disk with all the X-Rays, CT, PET, and MRI scans on it for them to copy on Monday, and I’m very glad I did, since it took me over an hour just to find the place. (This is a new building, on a new road, and my GPS thing in my car doesn’t even know it’s there.)
So… I’ll see what he has to say after we’ve talked and he’s had a chance to go over that info I gave to him, and that will affect my final decision. I’m also going to be getting a new set of CT, PET, and MRI scans in two or three weeks to see how much farther this infection has spread since I checked into the hospital a month ago, and that will also be a big factor in my decision.
At least THIS TIME, the V.A. doctors aren’t saying they absolutely won’t do this like they have with so many other procedures that they deemed, “too drastic,” only to end up doing them in the end anyway along with having to do even more drastic surgery to deal with the problems I was trying to prevent in the first place.
THIS time, they seem to be leaving the decision up to me, though these doctors in critical positions here at the VA are telling me once again to just go home and live with it until it either kills me or ends in a life threatening emergency.
I’ll post again in a few days to relay what this doctor says, along with talking about some of the amazing things one finds out about the attitudes of the various people dealing with my case as revealed in those 2,100 or so pages of records. Some of it is pretty funny… J
I’m just hoping this guy is as good as everything I’ve read about him and the feedback his patients have put on the internet paint him up to be. What I can say is that God has always helped me through whatever life has thrown at me, and I’m putting my trust in Him to help me make the best decision and as He always has, help me to get through whatever the results may be.
This update is late because I had to go through my records to pull out the relevant documents for the doctor, (I’ll call him Dr. “Q“,) I’m seeing later this morning, (Friday,) morning to get an outside opinion on what to do with this infection in my left thigh and pelvis. These records are only those from my last admission, (Dec. 29th, 2009 through June 24th of 2010,) and this, (I came in for a check with my doctor on Jan 26th and was admitted on the 31st,) but came to around 2,100 pages long.
I’ve been going through all these records to pull the relevant documents out to give to Dr. “Q” so he has the information he needs to give me a good opinion on whether or not to have surgery to cut out the left half of my pelvis, (which would take the leg with it, of course,) and try to get rid of this whole bone infection mess once and for all, or go on a lifelong course of antibiotics to try to slow down how fast it spreads and ultimately dissolves my pelvis.
If I repeat certain things here, please forgive me, but I’m going to try to cover all the factors I’m having to weigh as I make this decision.
For a brief recount of the history behind this, on the night before Thanksgiving, 2009, I rolled onto my left side in my sleep and the pain that would normally wake me up just didn’t for some reason, and I ended up lying on that side all night long. That hip was really screwed up because of having to have the ball cut off the femur way back in the very early 1980’s after my spasms dislocated, and totally destroyed the socket, on my left hip. I woke up with the bedding soaked with blood and a brand new bedsore on that hip.
I went in to the VA out there in Puerto Rico, (where I was living at the time,) as soon as I could, and had they done the surgery to repair that bedsore back then, all the subsequent problems I’ve had with my left thigh and pelvis since then could have been avoided, but the plastic surgeon, (who was an outside contracted doctor to the V.A., but normally did boob jobs, lyposuction, lip poofs, and so on in his regular practice,) turned out to be a total asshole of major proportions, and after three and a half years of putting repair surgery off, with me bouncing in and out of the hospital as complications developed, ended up telling me, “I wouldn’t operate on you if your life depended on it!” That’s a whole other story, but that was what made me decide to move back here to Albuquerque to try to get treatment here at this V.A. hospital for it.
They waited another two and a half years before admitting me to treat the bedsore, and even though I was dealing with a massive infection of the bone and soft tissues in my left thigh and femur, ultimately refused to do anything and were going to discharge me until, four days after they’d made that decision, the infection went septic, and “no, No, NO!,” turned into, “now, Now, NOW!”
I wanted them to just cut the leg off to prevent any infection from getting into my pelvis, but as has happened many times before that, they refused because they considered that to be “too drastic.” Back when the spasms were ripping my hips and knees apart, I developed bone growing in the soft tissues of that hip and had to go through pretty intensive radiation treatments to stop that growth, and in spite of having had at least two, and if I recall correctly, three surgeries on that hip immediately after the radiation treatments, and everything healing up both quickly and well, they decided that any surgery they did would never, EVER heal because that area had been irradiated in the past.
They ended up doing four surgeries in two weeks after things went septic to cut out all the infected bone and tissue, and surprise, surprise, the big hole they left in my hip, (about five inches long, three wide, and an inch deep overall with a crevasse down the center that was at least three inches deep filled in and healed up completely and perfectly in about seven weeks.
Looking through all the records, the same doctors who were declaring that any surgical wound would never heal before said exactly the same thing this time about doing any surgical repair for this infection I’m dealing with now. (They hadn’t quite gotten all the infected stuff out last time and it started up again, spreading halfway down my left thigh and into my pelvis, and in just seven months, ate completely through the front pelvic bone, which is about between one and two inches thick and four inches long, as well as eating away more of what remained of my left femur that they’d cut the top six inches or so off of in those four surgeries last year.)
Needless to say, this is a VERY aggressive infection, (staph infection,) so if I don’t have this surgery done, and just try to control it with antibiotics, it may slow it’s progression down, but it won’t stop it spreading or the deterioration of the bone in my pelvis that it’s doing.
This would lead to one of several problems down the road eventually. Either it would weaken my pelvis to where it would break when I take a fall out of my wheelchair and, with all the major blood vessels that run through the pelvis, have a good chance of cutting my femoral artery and I’d bleed out in just a few minutes and die.
Another possibility is that it would end up with a break in the pelvis, but NOT cut any of the big blood vessels, and they’d end up having to cut out half my pelvis anyway, or if the infection spreads to both sides, cutting out the entire pelvis and I’d be cut in half at the waist.
A third possibility is that the infection would go septic again at some point, and if I didn’t recognize the symptoms quickly enough, a systemic staph infection will kill you in just two or three days.
Another possibility is that the infection would continue to spread through the bones and soft tissues until it is in my spine as well, and far enough up my trunk that even cutting me in half at the waist wouldn’t get rid of it and I’d just be waiting to die of the staph infection shutting down my organs as it reached them.
The last possibility is that the infection would get into my spine and eat that way and I’d end up getting cut in half at the waist.
As you can see, not getting this surgery done now to take out half my pelvis leaves me facing a slow, but inevitable, SUPER major surgery, (at best,) that would leave me bedridden in a nursing home for the rest of my life. The only question is how long would that take.
The alternative is getting half my pelvis cut out now, which is dangerous to begin with. The only study I found on hemipelvectomies done on spinal cord injured patients with massive infection of the bone and soft tissues shows a 25% mortality rate from the surgery alone, but doesn’t have any information on the general health of the patients involved, so I believe my survival rate would be better than that because I’m still in pretty good health outside of the problems caused by this infection.
The possibilities, (assuming the surgery is successful,) are that I’d get my quality of life back to a certain degree, even though I’d have to relearn how to do a lot of stuff because of having half my pelvis removed. (One common problem I found on several sites devoted to people who’ve had hemipelvectomies, though all of them are people who had bone cancer, or else some terrible accident that crushed half their pelvis, was that they tend to fall into the toilet until they get used to having a lower body only half as wide as it previously was. LOL…)
The other is the risk that I’d never be able to get back into the wheelchair again because of balance problems and I’d end up stuck in bed in a nursing home for the rest of my life.
Looking at the things said by these people who’ve had the surgery done, though, shows them getting an artificial leg, (don’t ask me how they end up using it, since there’s no stump to attach it to,) using crutches to get around, or, (the most common if they’re going to be out and about for any length of time,) using a wheelchair. (I DO have just a LITTLE bit of experience with this one, and I’m really not seeing why it wouldn’t be possible since, with the severity of my spinal curvature, (scoliosis,) my pelvis is tilted 45 to 50 degrees as it is, and I already sit on my right buttocks, with almost zero weight on my left buttocks, already.
EVERYONE I’ve talked to who’s known me since, or shortly after, I was shot has said to get the surgery done, and I’m tending to agree that, given my options, that’s the best choice I’ve got.
I have an appointment in the morning with the only doctor in New Mexico who does the hemipelvectomy surgeries, (he works at UNM Hospital,) and he’s the surgeon they’d send me to anyway if I decide to get this done.
A funny thing happened when I called to make the appointment for this consult with him in that I totally forgot to tell the secretary that I’m paralyzed. She’d said something about my needing a special little card to put on my dash board to park in the patient parking, and I just said that wouldn’t be a problem since I’ve got the handicapped parking placard, but it didn’t even occur to me that she would be thinking I could walk. I went down to drop off the medical records and disk with all the X-Rays, CT, PET, and MRI scans on it for them to copy on Monday, and I’m very glad I did, since it took me over an hour just to find the place. (This is a new building, on a new road, and my GPS thing in my car doesn’t even know it’s there.)
So… I’ll see what he has to say after we’ve talked and he’s had a chance to go over that info I gave to him, and that will affect my final decision. I’m also going to be getting a new set of CT, PET, and MRI scans in two or three weeks to see how much farther this infection has spread since I checked into the hospital a month ago, and that will also be a big factor in my decision.
At least THIS TIME, the V.A. doctors aren’t saying they absolutely won’t do this like they have with so many other procedures that they deemed, “too drastic,” only to end up doing them in the end anyway along with having to do even more drastic surgery to deal with the problems I was trying to prevent in the first place.
THIS time, they seem to be leaving the decision up to me, though these doctors in critical positions here at the VA are telling me once again to just go home and live with it until it either kills me or ends in a life threatening emergency.
I’ll post again in a few days to relay what this doctor says, along with talking about some of the amazing things one finds out about the attitudes of the various people dealing with my case as revealed in those 2,100 or so pages of records. Some of it is pretty funny… J
I’m just hoping this guy is as good as everything I’ve read about him and the feedback his patients have put on the internet paint him up to be. What I can say is that God has always helped me through whatever life has thrown at me, and I’m putting my trust in Him to help me make the best decision and as He always has, help me to get through whatever the results may be.
Monday, February 21, 2011
A change to the blog + latest medical development...
I’ve decided that I’m going to expand this blog to include things that come to my mind now and again. These will include blogs about current events, political issues, people I’ve known, (both those who have inspired me and those whose conduct is less than inspiring, (to put a polite edge on it,) as well as whatever else may pop into my wee brain.
I’ll continue to use this as a way of keeping a record of how things go for me health wise, but since the initial battery of tests and meetings with doctors is over, things go pretty slow on a day to day basis. Here’s a brief update on my health situation though, since I did get some info today…
I spoke with Dr. “P” yesterday, (Sunday,) afternoon, and he said that, after going down to talk with the specialists about the MRI, CT, and PET scans, the infection has indeed invaded the left side of my pelvis pretty extensively and, (as he put it,) “if you were a family member, I wouldn’t advise against a hemipelvectomy.” That’s pretty much as close as he’s going to get to saying that he thinks I should get it done since he’s not my primary doctor anymore. (Gotta be careful about the politics in the VA, you know…)
One “second opinion” down, and at least one, maybe two more to go. I’m supposed to call N.M. Orthopeadics later today to see if their major joint specialist will give me a consult, and now that I know which doctor at UNMH does hemipelvectomies, I’ll be calling there as well to see if he’ll give me a consult on this.
I was going to wait until I had a second series of scans done in another month or so, (six weeks after the scans taken when I was admitted,) to see how aggressively this infection is moving, if the antibiotics are putting it in check, and then make a decision, but if I these other outside ortho surgeons say it should be done as well, I may be making that decision sooner.
One thing I do know is that the pus that’s found it’s way out through that little hole on my high upper thigh hasn’t lessened at all. When I asked Dr. “E”, (my primary doc,) how long it should take to start seeing a difference, he said about a week. On Friday, I mentioned that things weren’t getting better, (and in fact, the area around the site of leakage is looking worse,) he said three weeks. (That’s kind of typical for the VA, so it’s not all that surprising.)
What is improving is the sedimentation rate from my blood draws has improved. Basically, this is a test that measures how quickly the red blood cells settle to the bottom of a test tube over the course of one hour. When there’s inflammation, infection, (both of which apply in my case,) cancer, or some autoimmune problem, (which don’t apply in my case,) the liver produces proteins that make the red blood cells stickier, and they clump together and sink at a faster rate. So this is a good sign, but not the only sign of what’s going on.
Right now, they’re changing the wick and dressing on the spot in my groin twice a day and most of the time, and most times when they take the wick out, it immediately drains a fair amount of pus. I’ll be asking my doctor to have the nurses get a culture of this next time it happens to send to the lab and confirm that the infection is only a staph infection and doesn’t have something else mixed in with it, since I know I’m MRSA positive, carry an antibiotic resistant strain of acinitobacter, and several other nasty little buggies that make the VA staff dress up in gowns and gloves anytime they have to do anything with me. (All this stuff even got me a private room last time I was in, but not so this time…)
Dr. “P” said he’ll be back in a couple of weeks and check in with me again, so that makes me feel better with the advice I’m getting. It amounts to a free “second opinion” for me that I know I can trust on an ongoing basis, so you can’t beat that.
So there’s the latest… Nothing world shaking, but still a bit more information for me to use while I make my decision about this surgery.
Dave
I’ll continue to use this as a way of keeping a record of how things go for me health wise, but since the initial battery of tests and meetings with doctors is over, things go pretty slow on a day to day basis. Here’s a brief update on my health situation though, since I did get some info today…
I spoke with Dr. “P” yesterday, (Sunday,) afternoon, and he said that, after going down to talk with the specialists about the MRI, CT, and PET scans, the infection has indeed invaded the left side of my pelvis pretty extensively and, (as he put it,) “if you were a family member, I wouldn’t advise against a hemipelvectomy.” That’s pretty much as close as he’s going to get to saying that he thinks I should get it done since he’s not my primary doctor anymore. (Gotta be careful about the politics in the VA, you know…)
One “second opinion” down, and at least one, maybe two more to go. I’m supposed to call N.M. Orthopeadics later today to see if their major joint specialist will give me a consult, and now that I know which doctor at UNMH does hemipelvectomies, I’ll be calling there as well to see if he’ll give me a consult on this.
I was going to wait until I had a second series of scans done in another month or so, (six weeks after the scans taken when I was admitted,) to see how aggressively this infection is moving, if the antibiotics are putting it in check, and then make a decision, but if I these other outside ortho surgeons say it should be done as well, I may be making that decision sooner.
One thing I do know is that the pus that’s found it’s way out through that little hole on my high upper thigh hasn’t lessened at all. When I asked Dr. “E”, (my primary doc,) how long it should take to start seeing a difference, he said about a week. On Friday, I mentioned that things weren’t getting better, (and in fact, the area around the site of leakage is looking worse,) he said three weeks. (That’s kind of typical for the VA, so it’s not all that surprising.)
What is improving is the sedimentation rate from my blood draws has improved. Basically, this is a test that measures how quickly the red blood cells settle to the bottom of a test tube over the course of one hour. When there’s inflammation, infection, (both of which apply in my case,) cancer, or some autoimmune problem, (which don’t apply in my case,) the liver produces proteins that make the red blood cells stickier, and they clump together and sink at a faster rate. So this is a good sign, but not the only sign of what’s going on.
Right now, they’re changing the wick and dressing on the spot in my groin twice a day and most of the time, and most times when they take the wick out, it immediately drains a fair amount of pus. I’ll be asking my doctor to have the nurses get a culture of this next time it happens to send to the lab and confirm that the infection is only a staph infection and doesn’t have something else mixed in with it, since I know I’m MRSA positive, carry an antibiotic resistant strain of acinitobacter, and several other nasty little buggies that make the VA staff dress up in gowns and gloves anytime they have to do anything with me. (All this stuff even got me a private room last time I was in, but not so this time…)
Dr. “P” said he’ll be back in a couple of weeks and check in with me again, so that makes me feel better with the advice I’m getting. It amounts to a free “second opinion” for me that I know I can trust on an ongoing basis, so you can’t beat that.
So there’s the latest… Nothing world shaking, but still a bit more information for me to use while I make my decision about this surgery.
Dave
Saturday, February 19, 2011
Positive developments...
When I was first admitted to the VA at the very end of 2009 to try to get the bedsore I had on my left hip repaired, I was assigned to the best doctor I’ve had in the thirty years since I was paralyzed. I’ll call him Dr. “P“. Unfortunately for me, three months after my admission, he retired. Before he left, he told me not to worry too much about the resistance from the orthopedic surgeon, and that they definitely would end up doing surgery on the bedsore on my hip, and he was right, except that they TRIED to send me home without doing anything and only did the surgeries only AFTER the infection went septic and my situation forced them to.
The first doctor I was given after he retired, (whom I’ll call Dr. “S“,) was one that I didn’t get along with at all. His ideas for my care were in direct opposition in most cases to what has worked for me all this time or went against what I knew to be the best solutions to various problems. As one example, he declared that I should begin having an internal catheter to drain my bladder rather than wearing an external catheter, (also called a “condom catheter,”,) because I’ve got a “neurogenic bladder” Well, by definition, EVERY spinal cord injured person has a neurogenic bladder which just means it doesn’t work normally.
In my case, my bladder and the sphincter muscles are coordinated, so when my bladder has a certain amount of urine in it, the bladder will squeeze down and the sphincter muscle relax and I urinate, and at the end, I have very little residual urine left in my bladder. In this situation, I’m very lucky, since if the sphincter doesn’t relax when the bladder muscle contracts, it will push the urine back up into the kidneys and ultimately cause kidney failure. If there is residual urine left after this process, it becomes ripe for bladder infections, which can also spread up the ureters, (the small tubes that run from your kidney’s to your bladder,) and into the kidneys causing all sorts of more severe problems.
For those who do have to wear either an indwelling catheter or catheterize themselves at certain intervals, every time the catheter is changed, they risk a bladder infection along with it’s risks to the kidneys. One has to observe sterile technique when changing an internal catheter, and managing to do this every single time is virtually impossible.
Dr. “S” had no other justification for wanting me to switch to an internal catheter except for having a neurogenic bladder, and wouldn’t listen to anything I had to say about having had no problems with using an external catheter. His opinion was set, and that was that. We butted heads on a number of issues, but that’s just one example.
Well, Dr. “P” recruited another doctor, (I’ll call him Dr. “E”,) from a different department of the VA to come as his replacement, and he’s another very good doctor. I’ve heard some other patients complaints about him, but he and I have gotten on very well, he takes the time to explain why he’s wanting to do this or that, LISTENS to what I have to say, and accepts my decisions if they make sense to him, (none of which Dr. “S” did when I was under his care.) The only problem I have with him is that he defers to other doctors in other departments far too quickly and easily with changes to my care that I not only disagree with, but make no logical sense.
Anyway, I was out in the smoke shack with a couple of other guys earlier today when suddenly Dr. “P” shows up wanting to talk to one of the other guys. He also said he wanted to talk to me, and I wanted to say hi to him myself. Mainly, I wanted to tell him that his prediction had turned out to be right, but after I’d done that, he asked why I was in again, and I told him about the infection getting into my pelvis and doing the damage it’s done in there.
The next thing I know, I’m in an office with him, giving him the updates on everything that happened and how things have gone, and he’s on the computer reviewing his own and other doctor’s notes, telling me he’s going to have to go down to the X-Ray department and look at my X-rays, MRI’s, and CT and PET scans and he’s writing new notes in my file.
I feel bad in one way because I hate to pull him out of retirement, but in another, I’m absolutely thrilled, because as I said, he’s the best doctor I’ve had in the 30 years that I’ve been paralyzed. As it turns out, he stops in every couple of weekends just to check up on his old patients and see how they’re doing, (which will tell you all there is to tell about what kind of doctor he is. When I first came in, he pulled and read through my entire VA record because there’s so much involved in my case.)
I don’t know when, (or even if, since he may just call Dr. “E” and give his opinion there,) I’ll hear back from him, but it’s great to know he’s back on my case, even as just a consulting doctor, but there was an added bonus to his interest in my situation.
There’s only one doctor in New Mexico that does the hemipelvectomy surgery, and Dr. “E” couldn’t find out who this was when I said I wanted to get an outside consult on my situation before I made a decision about potential surgery. When I asked Dr. “P” if he knew who it was, he pulled up the records of the only other patient from this spinal ward that had one done, and gave his name to me, so now I know exactly who to contact to get the best second opinion on this from.
I’ve got all the pictures, (X-Rays, CT and PET scans, MRI’s, etc,) from the last time I was in through the ones they’ve done up to date on a CD, and will hopefully be picking up all my records from then through the present on Monday, (they haven’t had them ready on time the last two times I went to pick them up since, as I found out, they run around a thousand pages,) to take with me since I was already trying to set things up to get a second opinion from this place called “New Mexico Orthopeadics”, (a group of ortho doctors that my brother recommended after the surgeries he’s had on his knees there.)
I’m supposed to call them back on Monday to see if the major joint surgeon there is going to see me for a second opinion, or if he declines since this is bigger than anything he’s done, but I’ll see if I can get a consult with the surgeon down at UNM Hospital first, and if so, then decide if I want to get two outside opinions rather than just one. I’m suspecting that, given the information I’ve already told to the lady at the NM Ortho place the doctor there will decline to give an opinion since this involves so many factors, (my being a paraplegic, having had the ball cut off the femur causing the chronic dislocation of that hip for over 25 years before they finally treated what was then a six year old bedsore that wouldn’t heal, the severe bone infection, etc.)
BUT… while there isn’t any “good” decision to be made in my situation, (no matter what I decide, I’ll be in worse shape than before this whole drama with that bedsore began,) I’ll have the advice of a superb doctor from Dr. “P” and hopefully the opinion of the surgeon who’s done hemipelvectomies before.
As a side note, all I’ve heard from the doctors here is that if I have one, I’ll never be able to sit in a chair again, and that this was the case with the one they had to do before, BUT… I found out today, talking with Dr. “P”, that this other guy was in his late 70’s, overweight, generally inactive to begin with, (had a power wheelchair even though he had good use of his arms and hands,) etc., which hardly puts us in the same category.
I’ve always found ways to do the things I’ve wanted to do, (unless they ended up being physically impossible,) either through just continuing to try until I succeeded or, in other cases, jury rigging things to fit my situation so they worked for me. Since I never heard any logical reason why I’d never be able to sit in the wheelchair again, and know that other’s who’ve had a hemipelvectomy, (although previously not disabled,) use a wheelchair, (as well as things that won’t count in my case such as a prosthetic leg and crutches,) I see no reason why I shouldn’t also be able to use a wheelchair afterwards if I do end up getting this done, (though I am aware of the risk that I may end up being wrong on this.) I DO have just at WEE bit more experience with a wheelchair than these other folks, (who’ve had to have it done due to either cancer or having their pelvis so badly damaged in some accident it required half their pelvis to be removed.) LOL…
So there’s the latest update on my situation. Not good news, per se, but a very positive development, to be sure!
Dave
The first doctor I was given after he retired, (whom I’ll call Dr. “S“,) was one that I didn’t get along with at all. His ideas for my care were in direct opposition in most cases to what has worked for me all this time or went against what I knew to be the best solutions to various problems. As one example, he declared that I should begin having an internal catheter to drain my bladder rather than wearing an external catheter, (also called a “condom catheter,”,) because I’ve got a “neurogenic bladder” Well, by definition, EVERY spinal cord injured person has a neurogenic bladder which just means it doesn’t work normally.
In my case, my bladder and the sphincter muscles are coordinated, so when my bladder has a certain amount of urine in it, the bladder will squeeze down and the sphincter muscle relax and I urinate, and at the end, I have very little residual urine left in my bladder. In this situation, I’m very lucky, since if the sphincter doesn’t relax when the bladder muscle contracts, it will push the urine back up into the kidneys and ultimately cause kidney failure. If there is residual urine left after this process, it becomes ripe for bladder infections, which can also spread up the ureters, (the small tubes that run from your kidney’s to your bladder,) and into the kidneys causing all sorts of more severe problems.
For those who do have to wear either an indwelling catheter or catheterize themselves at certain intervals, every time the catheter is changed, they risk a bladder infection along with it’s risks to the kidneys. One has to observe sterile technique when changing an internal catheter, and managing to do this every single time is virtually impossible.
Dr. “S” had no other justification for wanting me to switch to an internal catheter except for having a neurogenic bladder, and wouldn’t listen to anything I had to say about having had no problems with using an external catheter. His opinion was set, and that was that. We butted heads on a number of issues, but that’s just one example.
Well, Dr. “P” recruited another doctor, (I’ll call him Dr. “E”,) from a different department of the VA to come as his replacement, and he’s another very good doctor. I’ve heard some other patients complaints about him, but he and I have gotten on very well, he takes the time to explain why he’s wanting to do this or that, LISTENS to what I have to say, and accepts my decisions if they make sense to him, (none of which Dr. “S” did when I was under his care.) The only problem I have with him is that he defers to other doctors in other departments far too quickly and easily with changes to my care that I not only disagree with, but make no logical sense.
Anyway, I was out in the smoke shack with a couple of other guys earlier today when suddenly Dr. “P” shows up wanting to talk to one of the other guys. He also said he wanted to talk to me, and I wanted to say hi to him myself. Mainly, I wanted to tell him that his prediction had turned out to be right, but after I’d done that, he asked why I was in again, and I told him about the infection getting into my pelvis and doing the damage it’s done in there.
The next thing I know, I’m in an office with him, giving him the updates on everything that happened and how things have gone, and he’s on the computer reviewing his own and other doctor’s notes, telling me he’s going to have to go down to the X-Ray department and look at my X-rays, MRI’s, and CT and PET scans and he’s writing new notes in my file.
I feel bad in one way because I hate to pull him out of retirement, but in another, I’m absolutely thrilled, because as I said, he’s the best doctor I’ve had in the 30 years that I’ve been paralyzed. As it turns out, he stops in every couple of weekends just to check up on his old patients and see how they’re doing, (which will tell you all there is to tell about what kind of doctor he is. When I first came in, he pulled and read through my entire VA record because there’s so much involved in my case.)
I don’t know when, (or even if, since he may just call Dr. “E” and give his opinion there,) I’ll hear back from him, but it’s great to know he’s back on my case, even as just a consulting doctor, but there was an added bonus to his interest in my situation.
There’s only one doctor in New Mexico that does the hemipelvectomy surgery, and Dr. “E” couldn’t find out who this was when I said I wanted to get an outside consult on my situation before I made a decision about potential surgery. When I asked Dr. “P” if he knew who it was, he pulled up the records of the only other patient from this spinal ward that had one done, and gave his name to me, so now I know exactly who to contact to get the best second opinion on this from.
I’ve got all the pictures, (X-Rays, CT and PET scans, MRI’s, etc,) from the last time I was in through the ones they’ve done up to date on a CD, and will hopefully be picking up all my records from then through the present on Monday, (they haven’t had them ready on time the last two times I went to pick them up since, as I found out, they run around a thousand pages,) to take with me since I was already trying to set things up to get a second opinion from this place called “New Mexico Orthopeadics”, (a group of ortho doctors that my brother recommended after the surgeries he’s had on his knees there.)
I’m supposed to call them back on Monday to see if the major joint surgeon there is going to see me for a second opinion, or if he declines since this is bigger than anything he’s done, but I’ll see if I can get a consult with the surgeon down at UNM Hospital first, and if so, then decide if I want to get two outside opinions rather than just one. I’m suspecting that, given the information I’ve already told to the lady at the NM Ortho place the doctor there will decline to give an opinion since this involves so many factors, (my being a paraplegic, having had the ball cut off the femur causing the chronic dislocation of that hip for over 25 years before they finally treated what was then a six year old bedsore that wouldn’t heal, the severe bone infection, etc.)
BUT… while there isn’t any “good” decision to be made in my situation, (no matter what I decide, I’ll be in worse shape than before this whole drama with that bedsore began,) I’ll have the advice of a superb doctor from Dr. “P” and hopefully the opinion of the surgeon who’s done hemipelvectomies before.
As a side note, all I’ve heard from the doctors here is that if I have one, I’ll never be able to sit in a chair again, and that this was the case with the one they had to do before, BUT… I found out today, talking with Dr. “P”, that this other guy was in his late 70’s, overweight, generally inactive to begin with, (had a power wheelchair even though he had good use of his arms and hands,) etc., which hardly puts us in the same category.
I’ve always found ways to do the things I’ve wanted to do, (unless they ended up being physically impossible,) either through just continuing to try until I succeeded or, in other cases, jury rigging things to fit my situation so they worked for me. Since I never heard any logical reason why I’d never be able to sit in the wheelchair again, and know that other’s who’ve had a hemipelvectomy, (although previously not disabled,) use a wheelchair, (as well as things that won’t count in my case such as a prosthetic leg and crutches,) I see no reason why I shouldn’t also be able to use a wheelchair afterwards if I do end up getting this done, (though I am aware of the risk that I may end up being wrong on this.) I DO have just at WEE bit more experience with a wheelchair than these other folks, (who’ve had to have it done due to either cancer or having their pelvis so badly damaged in some accident it required half their pelvis to be removed.) LOL…
So there’s the latest update on my situation. Not good news, per se, but a very positive development, to be sure!
Dave
Tuesday, February 15, 2011
A few examples of VA health care...
Yesterday, two other vets and I started talking about our various predicaments in dealing with VA health care. My story has already been covered in the last two posts, (first two?,) to this blog, so after a quick update on my situation, and it’s total lack of logic, I’ll give two more examples of the same doctors making very similar mistakes with disastrous results for the patients.
In my situation, the head of ortho has decided that the people on the spinal cord unit, who deal with tunneled sores of various types all the time, don’t know what they’re doing, and has convinced my doctor to stop putting the gauze wick all the way down into the infected tunnel in my right thigh. His reasoning is that somehow, by having that wick draw out the fluids and pus in there, it will cause pressure and an abscess, (one of several abscesses working it’s way to the surface is what led to this little hole opening up and draining to begin with,) and so the orders been changed so that now they’re only putting 3-4 cm of wick into the 8 cm deep hole.
When I pointed out to my doc that this doesn’t change a thing IF it was going to block up that hole and prevent drainage except to allow a larger area for the infection to fester in that tunnel rather than having a Dakin’s solution, (saline with 5% bleach,) soaked wick in there, and he agreed and said in a few days they’ll probably stop with the wick entirely and just have it drain. Why the wait? I have no idea. My worry is that that particular abscess will drain enough that the hole will close off, and since the “seed” of the infection, (it’s a staph infection in there,) will still be there, it’ll just regrow. We’ll see if it does close off or not, and then try to get them to act accordingly…
So… On to these other two guys!
One is a paraplegic, wounded in Vietnam after getting shot through the gut. A number of years back, podiatry came down to trim his toenails, (they don’t’ allow the nurses to do this for some reason,) and cut his nail on his big toe down to the quick. A few days later, his toe had turned bright red and was very swollen. He asked them to do a culture, and they refused, saying it wasn’t an infection but just irritation.
As he was trying to get treatment for an increasingly severe problem in his foot, the infection they’d given him ate the first two knuckles on his big toe, moved along the bottom of his foot and into his heel. The VA put him on antibiotics, but it didn’t stop the infection’s progress, only slowed it. They didn’t believe there was any real problem until, while in the shower, as he was washing his foot, his heel came off in his hand.
Then, it was suddenly an emergency, and they ended up amputating his leg below the knee. He’s still got the bone infection in his leg, but says it’s gone dormant and hasn’t moved in several years now. They want to take his entire leg off, but since he’s already terminal with lung cancer, he’s refused.
The second fellow is not spinal cord injured, but helps the recreational therapist out to pass his time. He came in a couple years back with what he thought was a spider bite on the back of his leg, with just a small black spot in the center of a red swollen area. They told him it was nothing to worry about and sent him home.
It got worse, and each time he came in, they would apply superficial treatment, never sending him for more extensive tests, and again send him home. An open sore developed, and they dressed it and still again, sent him home. This only got worse, and when they finally did culture the wound and send him for the proper tests, it too was a staph infection. In his case, the infection went septic and he was admitted to the ER and when they removed the latest dressing, his lower leg was green and emitting a foul odor, (gangrene.)
They ended up amputating this previously able bodied vet’s leg as well, and now he’s suing the VA for malpractice.
As just one other example that comes to mind, on my third trip to Puerto Rico, I broke one of the bones in my lower leg. I heard and felt it break. This was on a Sunday evening, and the girl I was out there to see, her daughter and I were going to go out to dinner. We went to the VA Emergency Room instead.
Because I wasn’t hollering and yelling about the pain, (I’ve developed a pretty high pain threshold over the years,) and because they didn’t have my patient records there, they sent me home without even sending me to get an X-Ray, telling me to come back the next day during normal hospital hours.
I did go back the next day, and golly gosh almighty! MY LEG WAS BROKEN! They put a cast on it, (a huge no-no with spinal cord injuries since the leg can swell can cause a pressure sore, though I didn’t know it at the time,) and told me to check in with the VA back here in town after I got back home. I did, and they changed the cast out for a removable brace, (called a “Bledsoe Boot,”) so I could check my leg for problems and adjust how tight the brace was on my leg to keep it immobile but allow for swelling if it occurred.
The point though is that the VA’s ER sent me home with a broken leg, refusing to do even a cursory check, telling me to come back the next day. That night I was wondering how I’d suddenly caught a cold since my nose was all stuffed up, and it turns out that is one of the symptoms of “autonomic dysreflexia”, a condition that high level spinal cord injured patients can have start if there is pain or discomfort below the level of injury, and which is potentially fatal since it causes the blood pressure to go way up, potentially causing a stroke or heart attack. (I was unaware of this particular symptom of disreflexia as well until afterwards.)
This is why I argue so vociferously against any government run health care system for the general public, and why those who advocate for one citing the VA as an example, frustrate the hell out of me in the pure, unadulterated ignorance they spout. Most wouldn’t know where their local VA hospital was if their life depended on it, much less have ever been inside one or spoken with the people who’ve dealt with the VA for any length of time.
And… (a personal gripe here…,) the ones advocating the loudest for government run health care are the self same people who, back before it became non-PC to so, were the first to damn veterans as baby killers, look down their noses at us, and even spit on us. Hell, just a couple years back, right after Obama took office, Napolitano issued that secret document to law enforcement, (that ended up being leaked,) that warned of how the biggest terrorist threat the US faced was from conservative Christians who owned guns and had served in the military.
The same politicians who repeatedly, administration after administration, Democrat and Republican, swear up and down how they are going to, or have, improved health care for our veterans, are the ones who ignore the problems that have gone on in the VA system for decades.
Visit your local VA sometime… Visit the wards and talk to the patients… Find out the reality for yourselves. You may just find yourselves shocked by what you hear…
Dave
In my situation, the head of ortho has decided that the people on the spinal cord unit, who deal with tunneled sores of various types all the time, don’t know what they’re doing, and has convinced my doctor to stop putting the gauze wick all the way down into the infected tunnel in my right thigh. His reasoning is that somehow, by having that wick draw out the fluids and pus in there, it will cause pressure and an abscess, (one of several abscesses working it’s way to the surface is what led to this little hole opening up and draining to begin with,) and so the orders been changed so that now they’re only putting 3-4 cm of wick into the 8 cm deep hole.
When I pointed out to my doc that this doesn’t change a thing IF it was going to block up that hole and prevent drainage except to allow a larger area for the infection to fester in that tunnel rather than having a Dakin’s solution, (saline with 5% bleach,) soaked wick in there, and he agreed and said in a few days they’ll probably stop with the wick entirely and just have it drain. Why the wait? I have no idea. My worry is that that particular abscess will drain enough that the hole will close off, and since the “seed” of the infection, (it’s a staph infection in there,) will still be there, it’ll just regrow. We’ll see if it does close off or not, and then try to get them to act accordingly…
So… On to these other two guys!
One is a paraplegic, wounded in Vietnam after getting shot through the gut. A number of years back, podiatry came down to trim his toenails, (they don’t’ allow the nurses to do this for some reason,) and cut his nail on his big toe down to the quick. A few days later, his toe had turned bright red and was very swollen. He asked them to do a culture, and they refused, saying it wasn’t an infection but just irritation.
As he was trying to get treatment for an increasingly severe problem in his foot, the infection they’d given him ate the first two knuckles on his big toe, moved along the bottom of his foot and into his heel. The VA put him on antibiotics, but it didn’t stop the infection’s progress, only slowed it. They didn’t believe there was any real problem until, while in the shower, as he was washing his foot, his heel came off in his hand.
Then, it was suddenly an emergency, and they ended up amputating his leg below the knee. He’s still got the bone infection in his leg, but says it’s gone dormant and hasn’t moved in several years now. They want to take his entire leg off, but since he’s already terminal with lung cancer, he’s refused.
The second fellow is not spinal cord injured, but helps the recreational therapist out to pass his time. He came in a couple years back with what he thought was a spider bite on the back of his leg, with just a small black spot in the center of a red swollen area. They told him it was nothing to worry about and sent him home.
It got worse, and each time he came in, they would apply superficial treatment, never sending him for more extensive tests, and again send him home. An open sore developed, and they dressed it and still again, sent him home. This only got worse, and when they finally did culture the wound and send him for the proper tests, it too was a staph infection. In his case, the infection went septic and he was admitted to the ER and when they removed the latest dressing, his lower leg was green and emitting a foul odor, (gangrene.)
They ended up amputating this previously able bodied vet’s leg as well, and now he’s suing the VA for malpractice.
As just one other example that comes to mind, on my third trip to Puerto Rico, I broke one of the bones in my lower leg. I heard and felt it break. This was on a Sunday evening, and the girl I was out there to see, her daughter and I were going to go out to dinner. We went to the VA Emergency Room instead.
Because I wasn’t hollering and yelling about the pain, (I’ve developed a pretty high pain threshold over the years,) and because they didn’t have my patient records there, they sent me home without even sending me to get an X-Ray, telling me to come back the next day during normal hospital hours.
I did go back the next day, and golly gosh almighty! MY LEG WAS BROKEN! They put a cast on it, (a huge no-no with spinal cord injuries since the leg can swell can cause a pressure sore, though I didn’t know it at the time,) and told me to check in with the VA back here in town after I got back home. I did, and they changed the cast out for a removable brace, (called a “Bledsoe Boot,”) so I could check my leg for problems and adjust how tight the brace was on my leg to keep it immobile but allow for swelling if it occurred.
The point though is that the VA’s ER sent me home with a broken leg, refusing to do even a cursory check, telling me to come back the next day. That night I was wondering how I’d suddenly caught a cold since my nose was all stuffed up, and it turns out that is one of the symptoms of “autonomic dysreflexia”, a condition that high level spinal cord injured patients can have start if there is pain or discomfort below the level of injury, and which is potentially fatal since it causes the blood pressure to go way up, potentially causing a stroke or heart attack. (I was unaware of this particular symptom of disreflexia as well until afterwards.)
This is why I argue so vociferously against any government run health care system for the general public, and why those who advocate for one citing the VA as an example, frustrate the hell out of me in the pure, unadulterated ignorance they spout. Most wouldn’t know where their local VA hospital was if their life depended on it, much less have ever been inside one or spoken with the people who’ve dealt with the VA for any length of time.
And… (a personal gripe here…,) the ones advocating the loudest for government run health care are the self same people who, back before it became non-PC to so, were the first to damn veterans as baby killers, look down their noses at us, and even spit on us. Hell, just a couple years back, right after Obama took office, Napolitano issued that secret document to law enforcement, (that ended up being leaked,) that warned of how the biggest terrorist threat the US faced was from conservative Christians who owned guns and had served in the military.
The same politicians who repeatedly, administration after administration, Democrat and Republican, swear up and down how they are going to, or have, improved health care for our veterans, are the ones who ignore the problems that have gone on in the VA system for decades.
Visit your local VA sometime… Visit the wards and talk to the patients… Find out the reality for yourselves. You may just find yourselves shocked by what you hear…
Dave
Saturday, February 12, 2011
The start of the waiting game...
Howdy folks,
Here’s the latest update…
I asked my doctor on Wednesday if he could find an outside orthopedic surgeon I could see so I could get an independent second opinion on what is the best solution to this bone infection in my left leg and left pelvis. He couldn’t find one for me, so I called a company made up of a group of orthopedic specialists, (including joint and spinal specialists,) to see if they’d take a look-see at my case and give me an opinion with fresh eyes.
I have to call the back on Tuesday to find out if one of their joint specialists thinks he can give a proper, (meaning truly independent,) second opinion on what my best course of action is with this bone infection in my pelvis. I need to call back on Tuesday in order to get my answer, and if one of them does feel he can help, make an appointment to see him.
When I asked about how much a consult would cost, I found out something very interesting about how private medical care works. First of all, the charge for an office visit runs from $160 to about $350, (and in my case, I’m expecting the higher charge since my situation is kind of complex.) When I told the I don’t have insurance and would be paying in cash, though, I was told that I’d get a 20% discount for whatever the payment ends up being. So if an insurance company were being billed for this visit, they’d charge more than just getting a cash payment at the time of delivery of services.
While I’m opposed to Obamacare, there’s something very wrong with this picture to me. I could understand a small extra charge with insurance since there’s extra paperwork involved and a delay in getting paid, but a 20% larger charge for the exact same services being given, (including surgeries, which very easily run into the tens of thousands of dollars,) just because an insurance company is being billed, (minus whatever one’s deductible is being paid by the patient,) just doesn’t make any sense. THAT’S why people’s insurance rates are so high, IMO. I could understand a slightly larger fee because of the paperwork involved and a delay in payment being rendered by the insurance company, but not 20%, especially on very expensive procedures. That should be a flat fee since the paperwork involved would be the same whether the patient is just going in for an office visit, (like I’ll be doing,) or getting some massive surgery performed. THAT is something that could be fixed legislatively that would do a great deal to help keep insurance costs from going through the roof.
Anyway, I digress… I’ll be picking up copies of my medical records and a CD with all my X-rays, CT and PET scans, Ultrasounds, etc., burned onto it on Monday to take with me for any appointment I do get, (if they don’t feel like they can help me at this place, I’ll keep trying to find another doctor for a consult until I can get those fresh eyes on my situation.)
Meanwhile, the chief of orthopedic surgery convinced my doctor that putting a gauze wick into that hold that’s draining pus is a bad idea, and even flushing it out with saline is somehow bad because somehow this is going to create pressure in there and just make the infection spread more, so instead, they’re putting in just 3-4 cm of the gauze wick and, essentially, (if the assumption that this gauze wick, acting as a drain and keeping that tunnel open is actually blocking drainage,) still blocking up the hole for the pus to drain out of. I asked my doctor about that today, and told him that this didn’t make any sense, and he agreed so most likely in the next few days, they’ll stop putting anything into that hole to give a medium for the pus to drain through and just hope the hole doesn’t close itself up, (and again, it’s 8cm deep but barely larger in diameter than a toothpick.)
I also asked my doctor how long it should be before the antibiotics I’m on should start killing the infection and reducing the amount of pus that’s draining, and he said about a week, which was yesterday, (Friday.) There’s been no decrease in either the discharge from this little hole or the burning sensation in my thigh from the infection, so I’m thinking that they’re idea of just leaving it alone and my being on antibiotics to keep it from spreading isn’t going to work. (The IV antibiotic I‘ve been on for this past week, vancomycin, is one of the strongest there is.)
I also got the doctor to say he’d think about giving me another CT/PET scan in another month or so in order to see how fast this infection is spreading, whether the antibiotics are doing anything to slow it down, etc., which will affect my final decision on this hemipelvectomy surgery. If the antibiotics aren’t working, I’m definitely going to get it done before it gets to my spinal column or over to my right pelvis. If the antibiotics do halt it’s progress, (they’ve already said that nothing will kill it off completely since the bones don’t get much blood supply, so the antibiotics can’t get to it very well, which makes me wonder why they think putting me on antibiotics for the rest of my life to keep it in check will work,) it may change what I end up doing.
And, of course, I got what’s become the usual answer when I asked why putting me on oral antibiotics for the rest of my life would keep this infection in check if much stronger antibiotics can’t get into the bone to kill it off, I got what’s become the usual answer from VA docs in general, which is some variation of, “if it gets worse, THEN we’ll have to do something about it.”, except that it getting worse and spreading is precisely what I’m trying to avoid having happen. I want the infected bone and soft tissues GONE completely and for good, not to wait until they have to cut me in half above the pelvis to get rid of an infection that’s spread to both sides of my pelvis.
On the plus side, on Monday, I’ll have all the records to read through myself, as well as all the scans I should be able to look at on my own computer to see just how far this infection has penetrated my pelvis already, which will also affect my decision.
SO… it’s basically a waiting game for the moment. I’ll get an outside opinion on this, give the antibiotics they’re giving me now another week or so to see if the drainage from that hole slows down, and go from there. I’ll keep posting to this blog every couple of days on how things are going, but I’m also going to profile some of the people I’ve met, both good and bad, and for the good ones, what makes them so amazing, and for the bad ones, what makes them so bad, (mostly people who abuse the VA system in order to get drugs or try to get benefits they don’t truly deserve, etc.)
For those who are popping prayers upstairs on my behalf, what I need most at the moment is the wisdom to make the right call on this, because no matter what decision I do make, the risks are high for things to go wrong and me ending up far worse off than I am now, or in a worst case situation, just plain dead. So please pray for God to grant me the wisdom I need to make the best decision on this.
Dave
Here’s the latest update…
I asked my doctor on Wednesday if he could find an outside orthopedic surgeon I could see so I could get an independent second opinion on what is the best solution to this bone infection in my left leg and left pelvis. He couldn’t find one for me, so I called a company made up of a group of orthopedic specialists, (including joint and spinal specialists,) to see if they’d take a look-see at my case and give me an opinion with fresh eyes.
I have to call the back on Tuesday to find out if one of their joint specialists thinks he can give a proper, (meaning truly independent,) second opinion on what my best course of action is with this bone infection in my pelvis. I need to call back on Tuesday in order to get my answer, and if one of them does feel he can help, make an appointment to see him.
When I asked about how much a consult would cost, I found out something very interesting about how private medical care works. First of all, the charge for an office visit runs from $160 to about $350, (and in my case, I’m expecting the higher charge since my situation is kind of complex.) When I told the I don’t have insurance and would be paying in cash, though, I was told that I’d get a 20% discount for whatever the payment ends up being. So if an insurance company were being billed for this visit, they’d charge more than just getting a cash payment at the time of delivery of services.
While I’m opposed to Obamacare, there’s something very wrong with this picture to me. I could understand a small extra charge with insurance since there’s extra paperwork involved and a delay in getting paid, but a 20% larger charge for the exact same services being given, (including surgeries, which very easily run into the tens of thousands of dollars,) just because an insurance company is being billed, (minus whatever one’s deductible is being paid by the patient,) just doesn’t make any sense. THAT’S why people’s insurance rates are so high, IMO. I could understand a slightly larger fee because of the paperwork involved and a delay in payment being rendered by the insurance company, but not 20%, especially on very expensive procedures. That should be a flat fee since the paperwork involved would be the same whether the patient is just going in for an office visit, (like I’ll be doing,) or getting some massive surgery performed. THAT is something that could be fixed legislatively that would do a great deal to help keep insurance costs from going through the roof.
Anyway, I digress… I’ll be picking up copies of my medical records and a CD with all my X-rays, CT and PET scans, Ultrasounds, etc., burned onto it on Monday to take with me for any appointment I do get, (if they don’t feel like they can help me at this place, I’ll keep trying to find another doctor for a consult until I can get those fresh eyes on my situation.)
Meanwhile, the chief of orthopedic surgery convinced my doctor that putting a gauze wick into that hold that’s draining pus is a bad idea, and even flushing it out with saline is somehow bad because somehow this is going to create pressure in there and just make the infection spread more, so instead, they’re putting in just 3-4 cm of the gauze wick and, essentially, (if the assumption that this gauze wick, acting as a drain and keeping that tunnel open is actually blocking drainage,) still blocking up the hole for the pus to drain out of. I asked my doctor about that today, and told him that this didn’t make any sense, and he agreed so most likely in the next few days, they’ll stop putting anything into that hole to give a medium for the pus to drain through and just hope the hole doesn’t close itself up, (and again, it’s 8cm deep but barely larger in diameter than a toothpick.)
I also asked my doctor how long it should be before the antibiotics I’m on should start killing the infection and reducing the amount of pus that’s draining, and he said about a week, which was yesterday, (Friday.) There’s been no decrease in either the discharge from this little hole or the burning sensation in my thigh from the infection, so I’m thinking that they’re idea of just leaving it alone and my being on antibiotics to keep it from spreading isn’t going to work. (The IV antibiotic I‘ve been on for this past week, vancomycin, is one of the strongest there is.)
I also got the doctor to say he’d think about giving me another CT/PET scan in another month or so in order to see how fast this infection is spreading, whether the antibiotics are doing anything to slow it down, etc., which will affect my final decision on this hemipelvectomy surgery. If the antibiotics aren’t working, I’m definitely going to get it done before it gets to my spinal column or over to my right pelvis. If the antibiotics do halt it’s progress, (they’ve already said that nothing will kill it off completely since the bones don’t get much blood supply, so the antibiotics can’t get to it very well, which makes me wonder why they think putting me on antibiotics for the rest of my life to keep it in check will work,) it may change what I end up doing.
And, of course, I got what’s become the usual answer when I asked why putting me on oral antibiotics for the rest of my life would keep this infection in check if much stronger antibiotics can’t get into the bone to kill it off, I got what’s become the usual answer from VA docs in general, which is some variation of, “if it gets worse, THEN we’ll have to do something about it.”, except that it getting worse and spreading is precisely what I’m trying to avoid having happen. I want the infected bone and soft tissues GONE completely and for good, not to wait until they have to cut me in half above the pelvis to get rid of an infection that’s spread to both sides of my pelvis.
On the plus side, on Monday, I’ll have all the records to read through myself, as well as all the scans I should be able to look at on my own computer to see just how far this infection has penetrated my pelvis already, which will also affect my decision.
SO… it’s basically a waiting game for the moment. I’ll get an outside opinion on this, give the antibiotics they’re giving me now another week or so to see if the drainage from that hole slows down, and go from there. I’ll keep posting to this blog every couple of days on how things are going, but I’m also going to profile some of the people I’ve met, both good and bad, and for the good ones, what makes them so amazing, and for the bad ones, what makes them so bad, (mostly people who abuse the VA system in order to get drugs or try to get benefits they don’t truly deserve, etc.)
For those who are popping prayers upstairs on my behalf, what I need most at the moment is the wisdom to make the right call on this, because no matter what decision I do make, the risks are high for things to go wrong and me ending up far worse off than I am now, or in a worst case situation, just plain dead. So please pray for God to grant me the wisdom I need to make the best decision on this.
Dave
Wednesday, February 9, 2011
Bringing my situation up to date...
To give a very brief background on my situation, about seven years ago, I was sleeping on a regular mattress, rolled over onto my left side in my sleep, (that hip was permanently dislocated many, many years back by a VA doctor’s screwup,) and suddenly had a bedsore.
I tried to get the VA in San Juan, PR, (where I was living at the time,) to treat it, but over the course of about three and a half years, and several hospitalizations for it, they refused to do anything more than passive treatment, and so I moved back to Albuquerque to get treatment out here.
It took two more years before they admitted me for treatment here, and ultimately decided to send me home, even though the bedsore was open to the bone, tunneled down and underneath the femur, and was infected. A few days later, before I’d been discharged, the infection went septic, (the infection spread to my entire body,) and they had no choice but to operate.
They’d initially refused because, according to them, any surgery would NEVER heal because I’d been through radiation treatments to stop extra bone growing through the soft tissues some 25+ years before. The ended up doing four surgeries, ultimately cutting off the top six inches of femur and leaving the wound open. Amazingly enough, just as I’d told them over and over, I healed up well, the wound filled in and closed rapidly, and I was discharged.
After initially feeling much better, I became very lethargic all the time, not having much energy for much of anything. After a power outage at my apartment building, the special medical air mattress I have deflated for a few hours while I was asleep and I wound up with a new bedsore on my right side up by the crest of the pelvis. As with other bedsores I’ve had in the past, (with the exception of that one on my left hip that just wouldn’t heal,) I treated this at home and it has been healing up very well. This brings us to the present…
I made an appointment to see my doctor, as he’d requested, about six months after my discharge. At that time, except for the lethargy and a well healing bedsore, I had no complaints. Two weeks before I came in, a small hole opened on my inner left thigh up in the groin area and was oozing pus. I started putting dressings on it and figured I’d point it out to my doctor when I came in. I got a call telling me my doctor would be out and I’d have to reschedule, but when I called back, told her that I did need to come in and see a doctor about this new issue.
When I came in, first the outpatient nurse saw it, then got a doctor I had for a short period of time during my previous stay and with whom I’d had severe personality clashes with. This time, he was cool though, (I’m assuming because everything that I’d said needed to be done in that previous stay had proven accurate,) and was blow away when he put the stick end of long swab into the hole, (something I hadn’t even thought of doing,) to check it’s depth, and it went in 8cm, (to about the middle of the thigh.)
That was the last Wednesday of last month. It was arranged that I’d be admitted the following Monday, (January 31st,) and I was given a buttload of supplies to take home with me. (FOUR full sized paper bags of dressings, solutions, thin gauze strips, etc., for four days of continuing to do my own dressings. Because of things like this, I have a closet that is full of medical supplies such that I could literally treat someone who’d been in a bad car accident from the supplies I had, including using one of the five suture kits I have to stitch up cuts. LOL…)
I came in at a little before 9AM on Monday, and literally didn’t have time to unpack before I was being sent hither and yon to various places for tests, examinations, etc. This continued every day throughout the week, and into yesterday. So far, I’ve had four meetings with people from the orthopedic surgery team, two from infection disease, 8 X-Rays, an MRI, a CT scan, a PET scan, an ultrasound, two blood draws, 18 times sticking me to get four IV’s in for IV infusion of antibiotics, two times when the entire spinal injury team has come to look me over, and three attempts before successfully getting a PICC line in, (that is a fancy IV that goes into a big vein in a bit below the armpit on the inner arm and threads through to the huge vein just above the heart, this being necessary because after all the abuse my veins have gotten over the years, it’s very hard to get an IV into one to begin with, and they’ll tolerate a max of four, and usually only one or two, infusions before they “blow”, or swell closed and any try to infuse anything just leaks out the entrance location for the IV and gets into the tissues around the vein.
As it turns out, they didn’t get all of the bone infection before, and where as it was not in my pelvis on my previous visit, (when I’d told them just to cut off the leg to keep it from getting to my pelvis, which they refused,) it is now back in the femur of my left leg, into all the extra bone that’s grown in the soft tissues, (called “ectopic bone”,) and IS now in my left pelvis rather aggressively. In the last seven months, it has eaten completely through the upper branch of the pubic bone, which is about twice as thick as your thumb and approx. four inches long.
The Infectious Disease people say that there are pockets of infection, (basically abscesses,) that are not “communicating”, or in simpler terms, aren’t connected to each other. It was one of these that ended up working it’s way to the surface in my groin area and started draining. They feel the only way to fix this infection is for the orthopedic surgeons to go in and cut out all that infected bone and tissue.
The Chief of Orthopedic surgery, who had refused to allow surgery last time around until the infection went septic, disagrees, saying that these pockets ARE connected and will all drain through that hole, (a bit larger around than a toothpick and 8cm long,) and somehow, that will stop the infection in my pelvis from spreading.
Two other orthopedic surgeons said the only way to fix this permanently is for me to get a hemi-pelvectomy, where they amputate the left half of my pelvis, (and the leg goes with it,) to keep it from spreading to my right pelvis and ultimately requiring them to cut me in half above the pelvis.
The Chief of Orthpedic surgery disagrees.
The things the spinal ward doctors are having done to deal with this infection is putting a cloth drain, (just a ¼” wide piece of gauze,) soaked in a saline/5% bleach solution, (called “Dakin’s soluttion”,) into this hole, then covering it with the same dressing I was using at home, and changing this twice a day.
The Chief of Orthopedic surgery disagrees with this treatment.
Today, he came down with a model of the pelvis and, (I was in bed at the moment,) and told me all about how if I had this hemipelvectomy, I would never, ever be able to sit in the wheelchair again because, in order to sit one has to sit on both of the bony prominences at the bottom of the pelvis. He insisted that I was still sitting on both of these prominences when I pointed out to him that when I’m sitting up, due to the severity of my scoliosis and the approx. 50 degree tilt of my pelvis, I only bear weight on my right buttocks to begin with. I saw him in the hall a few minutes later after going outside to have a cigarette, and SHOWED him that I can pass my hand underneath the left prominence when I’m sitting in the chair, and suddenly, the problem because that the scoliosis would get worse and my pelvis would now turn to an even greater angle because the left leg’s weight would no longer be helping pull it down. I didn’t even get into the fact that my left leg, when it’s sitting on my footrests or the straps above pushes UP on that side of my pelvis with him.
Once again, his advice, (just as before,) is for me to simply go home, WITH an active infection, and simply apply a dressing to absorb the pus that oozes out, and he claims that the bone infection in my pelvis will not spread, in spite of the fact that it HAS spread aggressively into my pelvis and already destroyed a good sized chunk of bone in there.
When I’ve pointed out the cases I’ve read about where other’s who’ve had hemipelvectomies DO use wheelchairs, his answer is that they do not have spinal cord injuries. (Which is true from the cases I’ve found so far, all of which have involved either some very traumatic injury to the pelvis or bone cancer in the pelvis.) What I see in this is that I’ve got more practice in the wheelchair than they have had prior to using one.
One of the strangest arguments from this doctor who wants to do nothing is that, BECAUSE the bedsore that wouldn’t’ heal previously, and the infection in the underlying bone, required surgery after it went septic, and against his every absolute prediction, I healed up just fine, this somehow caused the infection that they cleaned out before to spread into my pelvis and is the cause of my current problems. So according to his logic, my currently far worse bone infection and more dire choices are NOT because he refused to simply amputate a severely infected leg, but because after NOT doing so, and having the infection spread go septic, I dared to heal up against his every prediction and therefore didn’t give the infection an easy route out of my body.
I’ve asked MY doctor to see if he can find an outside doctor who can give me a set of fresh eyes with a consult, and he said he’ll try, though the only place he knows of that has done this procedure is at the UNM hospital. So we’ll see what he can come up with. If he can’t find a doctor who’s done this before, I’ll have to either try to find one on my own or just go by the information I can gather on my own from the ‘net.
As I’ve said elsewhere, the vast majority of doctors, nurses, techs, and aids are very good at their jobs. There always seems to be one somewhere in some critical position in the “chain of command” who decides against whatever I’m needing to have done, vetoes it, and in the end, what I have said needed to be done ends up being done anyway, but usually with far more drastic results.
So far, this doctor who just wants to do nothing has not said he won’t allow this procedure. In fact, when I asked him about it, he specifically said that the decision would be mine. I’m just hoping that he doesn’t change his mind.
Time will tell if I do make the decision to get this surgery done…
Dave
I tried to get the VA in San Juan, PR, (where I was living at the time,) to treat it, but over the course of about three and a half years, and several hospitalizations for it, they refused to do anything more than passive treatment, and so I moved back to Albuquerque to get treatment out here.
It took two more years before they admitted me for treatment here, and ultimately decided to send me home, even though the bedsore was open to the bone, tunneled down and underneath the femur, and was infected. A few days later, before I’d been discharged, the infection went septic, (the infection spread to my entire body,) and they had no choice but to operate.
They’d initially refused because, according to them, any surgery would NEVER heal because I’d been through radiation treatments to stop extra bone growing through the soft tissues some 25+ years before. The ended up doing four surgeries, ultimately cutting off the top six inches of femur and leaving the wound open. Amazingly enough, just as I’d told them over and over, I healed up well, the wound filled in and closed rapidly, and I was discharged.
After initially feeling much better, I became very lethargic all the time, not having much energy for much of anything. After a power outage at my apartment building, the special medical air mattress I have deflated for a few hours while I was asleep and I wound up with a new bedsore on my right side up by the crest of the pelvis. As with other bedsores I’ve had in the past, (with the exception of that one on my left hip that just wouldn’t heal,) I treated this at home and it has been healing up very well. This brings us to the present…
I made an appointment to see my doctor, as he’d requested, about six months after my discharge. At that time, except for the lethargy and a well healing bedsore, I had no complaints. Two weeks before I came in, a small hole opened on my inner left thigh up in the groin area and was oozing pus. I started putting dressings on it and figured I’d point it out to my doctor when I came in. I got a call telling me my doctor would be out and I’d have to reschedule, but when I called back, told her that I did need to come in and see a doctor about this new issue.
When I came in, first the outpatient nurse saw it, then got a doctor I had for a short period of time during my previous stay and with whom I’d had severe personality clashes with. This time, he was cool though, (I’m assuming because everything that I’d said needed to be done in that previous stay had proven accurate,) and was blow away when he put the stick end of long swab into the hole, (something I hadn’t even thought of doing,) to check it’s depth, and it went in 8cm, (to about the middle of the thigh.)
That was the last Wednesday of last month. It was arranged that I’d be admitted the following Monday, (January 31st,) and I was given a buttload of supplies to take home with me. (FOUR full sized paper bags of dressings, solutions, thin gauze strips, etc., for four days of continuing to do my own dressings. Because of things like this, I have a closet that is full of medical supplies such that I could literally treat someone who’d been in a bad car accident from the supplies I had, including using one of the five suture kits I have to stitch up cuts. LOL…)
I came in at a little before 9AM on Monday, and literally didn’t have time to unpack before I was being sent hither and yon to various places for tests, examinations, etc. This continued every day throughout the week, and into yesterday. So far, I’ve had four meetings with people from the orthopedic surgery team, two from infection disease, 8 X-Rays, an MRI, a CT scan, a PET scan, an ultrasound, two blood draws, 18 times sticking me to get four IV’s in for IV infusion of antibiotics, two times when the entire spinal injury team has come to look me over, and three attempts before successfully getting a PICC line in, (that is a fancy IV that goes into a big vein in a bit below the armpit on the inner arm and threads through to the huge vein just above the heart, this being necessary because after all the abuse my veins have gotten over the years, it’s very hard to get an IV into one to begin with, and they’ll tolerate a max of four, and usually only one or two, infusions before they “blow”, or swell closed and any try to infuse anything just leaks out the entrance location for the IV and gets into the tissues around the vein.
As it turns out, they didn’t get all of the bone infection before, and where as it was not in my pelvis on my previous visit, (when I’d told them just to cut off the leg to keep it from getting to my pelvis, which they refused,) it is now back in the femur of my left leg, into all the extra bone that’s grown in the soft tissues, (called “ectopic bone”,) and IS now in my left pelvis rather aggressively. In the last seven months, it has eaten completely through the upper branch of the pubic bone, which is about twice as thick as your thumb and approx. four inches long.
The Infectious Disease people say that there are pockets of infection, (basically abscesses,) that are not “communicating”, or in simpler terms, aren’t connected to each other. It was one of these that ended up working it’s way to the surface in my groin area and started draining. They feel the only way to fix this infection is for the orthopedic surgeons to go in and cut out all that infected bone and tissue.
The Chief of Orthopedic surgery, who had refused to allow surgery last time around until the infection went septic, disagrees, saying that these pockets ARE connected and will all drain through that hole, (a bit larger around than a toothpick and 8cm long,) and somehow, that will stop the infection in my pelvis from spreading.
Two other orthopedic surgeons said the only way to fix this permanently is for me to get a hemi-pelvectomy, where they amputate the left half of my pelvis, (and the leg goes with it,) to keep it from spreading to my right pelvis and ultimately requiring them to cut me in half above the pelvis.
The Chief of Orthpedic surgery disagrees.
The things the spinal ward doctors are having done to deal with this infection is putting a cloth drain, (just a ¼” wide piece of gauze,) soaked in a saline/5% bleach solution, (called “Dakin’s soluttion”,) into this hole, then covering it with the same dressing I was using at home, and changing this twice a day.
The Chief of Orthopedic surgery disagrees with this treatment.
Today, he came down with a model of the pelvis and, (I was in bed at the moment,) and told me all about how if I had this hemipelvectomy, I would never, ever be able to sit in the wheelchair again because, in order to sit one has to sit on both of the bony prominences at the bottom of the pelvis. He insisted that I was still sitting on both of these prominences when I pointed out to him that when I’m sitting up, due to the severity of my scoliosis and the approx. 50 degree tilt of my pelvis, I only bear weight on my right buttocks to begin with. I saw him in the hall a few minutes later after going outside to have a cigarette, and SHOWED him that I can pass my hand underneath the left prominence when I’m sitting in the chair, and suddenly, the problem because that the scoliosis would get worse and my pelvis would now turn to an even greater angle because the left leg’s weight would no longer be helping pull it down. I didn’t even get into the fact that my left leg, when it’s sitting on my footrests or the straps above pushes UP on that side of my pelvis with him.
Once again, his advice, (just as before,) is for me to simply go home, WITH an active infection, and simply apply a dressing to absorb the pus that oozes out, and he claims that the bone infection in my pelvis will not spread, in spite of the fact that it HAS spread aggressively into my pelvis and already destroyed a good sized chunk of bone in there.
When I’ve pointed out the cases I’ve read about where other’s who’ve had hemipelvectomies DO use wheelchairs, his answer is that they do not have spinal cord injuries. (Which is true from the cases I’ve found so far, all of which have involved either some very traumatic injury to the pelvis or bone cancer in the pelvis.) What I see in this is that I’ve got more practice in the wheelchair than they have had prior to using one.
One of the strangest arguments from this doctor who wants to do nothing is that, BECAUSE the bedsore that wouldn’t’ heal previously, and the infection in the underlying bone, required surgery after it went septic, and against his every absolute prediction, I healed up just fine, this somehow caused the infection that they cleaned out before to spread into my pelvis and is the cause of my current problems. So according to his logic, my currently far worse bone infection and more dire choices are NOT because he refused to simply amputate a severely infected leg, but because after NOT doing so, and having the infection spread go septic, I dared to heal up against his every prediction and therefore didn’t give the infection an easy route out of my body.
I’ve asked MY doctor to see if he can find an outside doctor who can give me a set of fresh eyes with a consult, and he said he’ll try, though the only place he knows of that has done this procedure is at the UNM hospital. So we’ll see what he can come up with. If he can’t find a doctor who’s done this before, I’ll have to either try to find one on my own or just go by the information I can gather on my own from the ‘net.
As I’ve said elsewhere, the vast majority of doctors, nurses, techs, and aids are very good at their jobs. There always seems to be one somewhere in some critical position in the “chain of command” who decides against whatever I’m needing to have done, vetoes it, and in the end, what I have said needed to be done ends up being done anyway, but usually with far more drastic results.
So far, this doctor who just wants to do nothing has not said he won’t allow this procedure. In fact, when I asked him about it, he specifically said that the decision would be mine. I’m just hoping that he doesn’t change his mind.
Time will tell if I do make the decision to get this surgery done…
Dave
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