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!
Saturday, March 5, 2011
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.
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