|Longterm prognosis after pcp relapse
Mar 17, 2002
About a month ago, after a long illness, my longtime partner was diagnosed with pcp. Not the best way to find out you're Positive, too. He was treated in a hospital, but without a primary physician. They discharged him too fast and he relapsed about a week later. He's now been in a hospital for about three weeks, continues on 5 (liters?) oxygen and is still on Bactrim and steroids. He started basic HIV meds a week ago. He has lost a lot of weight and is quite frail, though able to maintain his office work (bookkeeping) by modem. The doctor subbing for his reg. specialized care physician today indicated a CAT scan is in the offing in a few days because he thinks there may be some "serious" scarring or damage from the initial and relapse bout of pcp. How long should I expect my partner to be really, really sick the way he is, now. Initially, the doctor said, in 6 months you'll look back on all this .... but I wonder how long he'll be really diminished by all of this. My partner remains optimistic, though he has bouts of depression. The nutrition at the hospital is really substandard, too, as is compliance with dosing. They missed an entire dose of Bactrim 2 nights ago, and he was freaking as they passed the buck from nursing to the pharmacy to I don't know. I read through this site for quite a while tonight before I asked these questions. I didn't see any quite like them posed, hence my directness with these aspects of his disease. So when (obviously, generally speaking) should I expect him any better, to be discharged and is the level of care of the nutrition something we should complain about? Just in the last week he's finally reached an understanding with the housekeeping staff to not barge in at 4 AM and wake him up so they can remove nearly empty trash bags. Are we doing OK at this point or are we in trouble? The group of physicians treating him are among the top people in their field in this area. He made the mistake of needing doctors in the middle of the Retrovirus convention recently, and, literally, there was nearly no one in town that could see him at the time. They are going to do their first viral load this week, and his t-cells are like in double or single digits. When he was admitted, he was nearly hypertensive and his blood oxygen level was off the scale the machine could record. He's a lot better now, but I wonder how long this thing is going to have him. After 20 years of wondering what "survivors guilt" is all about, I feeling it myself. How could I have remained negative, when the person who infected him, predated our life together, and we had lots and lots of undsafe sex in the beginning (it was 1982, OK?). The former boyfriend died in 1984-85 of all the worst effects of the disease that the time had in store. Sorry. Rambling. Thanks for the answers.
Response from Dr. Feinberg
Sometimes a severe or relapsed bout of PCP will result in scarring and/or the formation of blebs ("bullae") at the periphery of the lung that can make a person vulnerable to a lung collapse. I suspect that the purpose of CT scan is to look for these kinds of problems, which can contribute to an inadequate level of oxygen in the blood. It is possible to survive all this and get better, although there is no way I can give you a prediction for how fast getting better will take nor how long your partner will survive after he does recover. If he doesn't have crippling damage to his lungs and he does well on HIV meds, then his chances of survival should be as good as anybody's.
The sad state of hospital care in America is near-universal in my experience, so I can't reassure you that things would be better elsewhere, including the hospital where I practice. Many things are done for staff convenience rather than for patient welfare. Why this is so baffles me, but it is true. So I suggest the following: talk nicely to the head nurse or nurse administrator responsible for the unit your partner is on and ask politely for housekeeping to be restricted to daytime hours so he can get some rest. Ask if it's OK if you post a polite note on his door to that effect. Offer to empty his wastebasket into the approved receptacle yourself. (I've seen a husband mop his wife's hospital room floor because he was unhappy with the level of housekeeeping attention she was getting).
BRING IN YOUR OWN FOOD-- hospital food is notoriously unappealing and is often delivered lukewarm at best. You know what your partner likes to eat-- bring it in. (Again, politely state that this is what you're going to try to do, so your activities don't upset the applecart.) If you are uncertain about what is sufficiently nutritious about the foods he's interested in eating, then get a dietician consult, either in the hospital or outside of it. Enlist the help of friends and family to cook good things for him that he'll want to eat. If he doesn't have much appetite, than ask his doctors if they can prescribe an appetite stimulant. Ask also to have his testosterone level checked-- it is often subnormal in advanced HIV disease and testosterone replacement therapy can help him both feel more normal and help him gain weight.
About the missed dose of medicine: this is unconscionable. It doesn't matter whose fault it was, it's just wrong. Make sure your partner's doctor knows about this and how unhappy the two of you are about it. Set up a backup plan so that if crucial medication doesn't arrive within an hour or two of the designated time that there is a way that you can directly contact a hospital administrator or the doctor him/herself so they can intervene appropriately. A slightly late dose of medicine is far better than no dose at all.
Lastly-- you are HIV- because you're lucky. There is nothing that feeling guilty about that will fix. You may be one of those people who have a mutant form of the coreceptor crucial to HIV's invasion of the body, so that despite multiple exposures you just can't get infected, or you may be just plain lucky. Be grateful that you're well and can be there for your partner now, when he really needs you. And practice safe sex once he's recovered, so you don't get infected. Good luck!
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