Chronic choices

I’m hanging steady these days. No hospital overnights, few “procedures”, no new diseases to compliment the half-dozen or so I’ve already collected. People tell me I look better. Yoga has strengthened my body and, it seems, the remaining bits of my mind. Life is good, then, as good as it has been for a while.

So I’m celebrating, right? Well… yes and no. Its not just downward-facing-dog poses, attentive doctors and luck that’s improved things. I made a choice – one of those choices where, to gain one thing you must sacrifice another. I’m doing it solo because no doctor would ever agree.

I’ve been around a lot of sick people and one of the most stubborn rules of thumb I’ve observed is this:as drugs are added one on top of another, as doses are maximized for effect, as new drugs are added for new problems or to counteract miseries caused by those already taken, the body reaches a point when the number and toxicity of the meds ingested becomes unmanageable and the consequences of what amounts to a giant chemistry experiment becomes unknowable. Unknowable that is until the meds go to war with each other and start killing their host.

This drug war is something I’ve been dreading. In the last year I’ve gotten perilously close to a full scale, multi-front battle.

I take meds for HIV and for HCV. I take more to suppress my immune system to prevent rejection of my transplanted liver. I take yet more to keep away infections like pneumonia or fungals that prey on intentionally weakened immune systems. And there are meds for a stomach eaten away by so many meds.

Then last year I scored some sort of dubious achievement by concocting not one but two autoimmune diseases, something supposedly impossible when you have an intentionally suppressed immune system.  And of course there are meds for these new AIs too.

It turns out that one of the meds crucial to keeping my stomach in line is essentially a blood pressure type med. As anyone who’s taken blood pressure meds knows, they s l o w    y o u    d o w w w w n. Problem is, that’s the exact opposite of what the meds the for autoimmune problems are doing: boosting (speeding up) circulation. I asked one of the autoimmune docs  if this was in fact the case. I deduced this clash myself, and though I sometimes pretend otherwise, I really don’t have a medical degree. He said yes. I asked what to do about it. He shrugged.

The important phrase in the last paragraph is “one of the autoimmune docs.” because I see multiple AI docs. And they are different docs from the multiple transplant/liver specialists who look after that part of my body. And both are different from the GI docs, who are different from… you get the idea.

Ask any one of them to do about their area of expertise and you get specific answers and instructions and an admonition to take prescribed meds EXACTLY. Ask any of them about conflicts with the meds prescribed by other docs, and they give that shrug and tell you to go see them. When you see and ask them what to do they tell you to take their meds EXACTLY. Conflicts? See the previous docs.

Not one of doctor, ever, not even your GP, will deal with the the totality of the situation that is you. Not one will acknowledge that what they see as a multiplicity of chronic problems is in fact just one: how you can stay alive; how you can live your life.

So if you need or want to make a choice, to treat one chronic condition over another, you must do the choosing yourself.

For me the decision was a no-brainer. Nothing I’ve experienced has been as bad as the autoimmune problems. Nothing. A liver transplant, where you are almost literally drawn and quartered? That’s a mere finger cut in comparison.  Same with pneumonia, decaying stomach, aches and pains. For me, nothing was worse than my body rejecting its very existence, which is essentially what AI diseases are.

So I stopped the med that relieves the pressure on the veins in my stomach that led to internal bleeding in favor of the meds that control keep the autoimmune conditions under some small control.

I know this is a temporary choice. I know I will probably have to resume the lapsed med if bleeding occurs in my stomach again. I can tell when things start to go wrong there (don’t ask) and the docs will tell me when things get out of hand. But it won’t be them making the decision, it’ll be me. And though they’d no doubt tsk-tsk in disapproval, I’m convinced they are in fact relieved that I insist on making the decision.

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