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
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