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
Monday, February 21, 2011
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
Tuesday, February 8, 2011
A Blog's Introduction...
Feb. 8, 2011
Welcome to my blog. It's a week late in getting started, but I guess better late than never.
I wanted to start this blog primarily to document the care of this veteran at the VA hospitals. I've been paralyzed from the armpits down since August 31st, 1980 after being shot through the chest, and have had so many occasions where something needed to be done to resolve a medical problem only to have the VA doctors decide that it was "too radical" until the damage I'd wanted to avoid had been done, and THEN have them do what needed to be done along with trying to repair the damage caused, it's ridiculous.
For those who advocate for US government run health care, you can't find a better example than the VA health care system. It's a model of inefficiency, medical mistakes, people covering their asses at the expense of the patient, neglect, waste, etc. Don't get me wrong... The large majority of doctors, nurses, techs, and aids do their best to help their patients, but there always seem to be the few that are in key spots in the tangle of red tape and bureaucracy that manage to screw things up royally in spite of the other’s best efforts. Almost all of the medical problems I’ve had to deal with, and this has involved 12 major surgeries to date and having spent more than 1/6th of the last 30+ years in the hospital, can be traced directly to previous mistakes made by the VA in my care.
I've started this blog primarily to document how the VA system works AS it is working, rather than going back later and trying to explain to people how this system has screwed up and made problems worse, sometimes catastrophically so. I’m dealing with the after effects of one such screwup right now, as I start this blog. This blog is simply an introductory blog, (as much to learn the way the “blogspot” website works as to give pertinent information.
Along the way, since things don’t happen on a daily basis, I’ll be writing about past mistakes that have ultimately led to my current hospitalization and situation, writing about various non-VA related things in my life, talking about some of the people I’ve met and meet who just blow my mind with their courage, some who are immoral/amoral individuals who are the dregs of society, others who don’t really stand out in a crowd but still make life more fun for those around them, and sometimes just some of the funny/weird stuff that goes on in the VA system and in life in general. (For example, up on the pulmonary floor, they have a sign outside one clinic that says, “Walk in clinic. By appointment only”)
I will also no doubt end up posting my thoughts about various other subjects, such as current events, a movie review if some film I see strikes me as either very good or very bad, and so on. Basically, this will hopefully be another way of keeping my mind occupied and active, as well as it’s primary purpose of relating the quality of care a 100% R2, (second highest rating possible,) disabled veteran is provided by the wonder that is the government provided health care system.
The only rules for comments that I’ll have here are that people aren’t allowed to start flame wars with each other. Vigorous debate is fine, but I’ll cut it off if things get out of hand and start into personal attacks, revealing personal information about other people, especially if it is intended to hurt them somehow, etc.
So… The show is officially on the road, and I’ll be writing up my first real entry, (rather than this introduction,) starting in just a few minutes. I hope y’all will find it both informative and entertaining.
Dave
Welcome to my blog. It's a week late in getting started, but I guess better late than never.
I wanted to start this blog primarily to document the care of this veteran at the VA hospitals. I've been paralyzed from the armpits down since August 31st, 1980 after being shot through the chest, and have had so many occasions where something needed to be done to resolve a medical problem only to have the VA doctors decide that it was "too radical" until the damage I'd wanted to avoid had been done, and THEN have them do what needed to be done along with trying to repair the damage caused, it's ridiculous.
For those who advocate for US government run health care, you can't find a better example than the VA health care system. It's a model of inefficiency, medical mistakes, people covering their asses at the expense of the patient, neglect, waste, etc. Don't get me wrong... The large majority of doctors, nurses, techs, and aids do their best to help their patients, but there always seem to be the few that are in key spots in the tangle of red tape and bureaucracy that manage to screw things up royally in spite of the other’s best efforts. Almost all of the medical problems I’ve had to deal with, and this has involved 12 major surgeries to date and having spent more than 1/6th of the last 30+ years in the hospital, can be traced directly to previous mistakes made by the VA in my care.
I've started this blog primarily to document how the VA system works AS it is working, rather than going back later and trying to explain to people how this system has screwed up and made problems worse, sometimes catastrophically so. I’m dealing with the after effects of one such screwup right now, as I start this blog. This blog is simply an introductory blog, (as much to learn the way the “blogspot” website works as to give pertinent information.
Along the way, since things don’t happen on a daily basis, I’ll be writing about past mistakes that have ultimately led to my current hospitalization and situation, writing about various non-VA related things in my life, talking about some of the people I’ve met and meet who just blow my mind with their courage, some who are immoral/amoral individuals who are the dregs of society, others who don’t really stand out in a crowd but still make life more fun for those around them, and sometimes just some of the funny/weird stuff that goes on in the VA system and in life in general. (For example, up on the pulmonary floor, they have a sign outside one clinic that says, “Walk in clinic. By appointment only”)
I will also no doubt end up posting my thoughts about various other subjects, such as current events, a movie review if some film I see strikes me as either very good or very bad, and so on. Basically, this will hopefully be another way of keeping my mind occupied and active, as well as it’s primary purpose of relating the quality of care a 100% R2, (second highest rating possible,) disabled veteran is provided by the wonder that is the government provided health care system.
The only rules for comments that I’ll have here are that people aren’t allowed to start flame wars with each other. Vigorous debate is fine, but I’ll cut it off if things get out of hand and start into personal attacks, revealing personal information about other people, especially if it is intended to hurt them somehow, etc.
So… The show is officially on the road, and I’ll be writing up my first real entry, (rather than this introduction,) starting in just a few minutes. I hope y’all will find it both informative and entertaining.
Dave
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