The good news would be the lack of bad news

I’ve been in the hospital in Houston again this week for my quarterly ritual of being poked, prodded, and stuffed into an airtight box while I blow into tubes. It’s so much fun, I just can’t tell you. While there’s been some minor variation in my pulmonary function numbers, the one that’s the most general indicator of the state of my health (FVC, or Forced Vital Capacity) has remained steady at 57%, exactly where it was when we went through this procedure three months ago. The fact that I have not declined further since then is great news, considering that my doctor had been concerned that my December numbers, which had dropped from the previous summer’s high of 61%, might have indicated that I was on the verge of cratering. A rapid falloff in lung capacity after a period of relative stability is not uncommon in Pulmonary Fibrosis patients. Had I continued to drop below his “magic number” threshold of 50%, I would right now be anxiously eyeballing a beeper, expecting a call to come at any moment summoning me to report to the hospital to have my lungs transplanted. The fact that I don’t have to worry about this for at least the next three months is a tremendous relief.

But at the same time, it also means that I will continue to remain stuck in this limbo state of not sick enough to be transplanted, yet not well enough to carry on most normal activities. As long as I am sitting still and not exerting, I feel fine … and in fact at these times it’s easy for me to forget that there’s anything wrong with me at all. However, once I stand up and start moving around, I am quickly reminded that pulmonary fibrosis has rendered my lungs unable to efficiently do their biological job of exchanging carbon dioxide for oxygen in my bloodstream. I become severely out of breath after just a few seconds, like someone in normal health would get from running around the block. It’s only with the help of supplemental oxygen that I am able to do much of anything at all. Like anyone else with a serious illness, I go through phases in my struggle to deal with it. Sometimes I’m grateful that medical science allows me to live with a condition that would probably have killed me outright within a year or two had I been born a century ago. Other times I feel resentful to be chained to this fucking oxygen hose. But fortunately, the good days overwhelmingly outnumber the bad. I can get out and about OK if I wheel my O2 tank along with me, and I have decent mobility with my little blue Buzzaround scooter (in fact, it can be actually fun to ride).

But I have to confess I’m getting tired and frustrated with remaining in limbo; after two years of this, part of me wants to get on with the transplant surgery and get it over with. With any luck, I will be able to regain somewhat of a normal life again post-transplant. I’ve met other patients who, several years after their surgery, say they feel better than they’ve ever felt before, which makes me very hopeful. The idea of being able to do the simple things I love again — travel, walk on the beach, go dancing, ride a bike — fills me with optimism, so I think “all right, cut me open and let’s get this show on the road.”

Of course, once I start really thinking about it, how one in ten transplant patients don’t make it out of the O.R. alive, how the average post-transplant life expectancy is only about five years, it scares the crap out of me. Medical science makes amazing discoveries every day: could lung tissue someday be regenerated, or grown externally to preserve the DNA structure in such a way that the body’s immune system doesn’t try to expel it as a “foreign object”? (Rejection is the single-most common reason for organ transplant failure.) Who knows what miracle “cure” could come along in the next year or two that might even eliminate the need for the surgery? With that in mind, the longer I can postpone it the better.

So in the meantime I’ll continue to wait, follow my medication and pulmonary rehab regimen, and try to stay as healthy as I can. I’ll remember to keep a positive attitude, and do my best to enjoy life … three months at a time.

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