Saturday, September 23, 2006

deadly serious

When I started this blog I vowed never to talk about health issues or anything deeply personal, but I'm going to do it now. After being diagnosed with cystic fibrosis in 2001, the mate has been in and out of the hospital and grappling with antibiotics failing against increasingly resistant bacteria. We're now at the point where there are no antibiotics left. Even the one that was supposed to work specifically against antibiotic-resistant bactera has failed.

CF is an ultimately fatal genetic flaw that deters the body's ability to process salt, and thus creates problems mostly in the lungs. Many organs have tiny hair-like items that normally wiggle and move things around, but this action is stunted in CF people. Salt is normally absorbed and retains moisture; with CF the lungs get sticky with mucus, which hardens and reduces airflow. This mucus combined with the reduced ability to push out contaminants makes a rich breeding ground for bacteria, and an ecology develops.

Thirty years ago, it was lucky for a CF patient to live to twenty. By now it's a well-researched disease; the average person diagnosed as a child is likely to make it into his or her forties. The mate's version of CF is a mild one, but was diagnosed late, and had twenty years of smoking-related lung damage to add zip to the party. Of the last 2 months since the last stint in the hospital, about 15 were difficult days, meaning fevers over 100, serious malaise, depression, difficulty eating, and/or getting breathless by walking downstairs. There were three excellent days. Twenty adequate ones, meaning we stop walking every 25 paces to rest, but we can still get out of the house and walk. The remainder were slightly bad, meaning mild fevers and light malaise.

So we're now looking at the possibility of a lung transplant, which is also a very serious event with its own problems and maintenance issues. The doctor likened it to jumping out of a plane: there's no turning back. The good thing is that replacement lungs do not acquire the attributes of CF lungs by being inside a CF person -- it's completely different DNA and stays that way. The cycle of bacteria and mucus, and potential reinfection from the sinuses, will simply not happen. There's a 50% chance of living five more years, and a 25% chance of ten.

The bad parts, after the risks of the operation itself, are a mess of immunosuppressants to prevent rejection. In the first year there's a chance of immediate rejection, which will likely immediately kill you, and after that there's a possibility of chronic rejection, which is also debilitating while the doctors figure out how to balance things out. The anti-rejection drugs have their own side effects, from kidney damage to acid reflux, and suppressing your immune system is not safe during flu season. And all this when you're already been physically weakened by the CF itself.

The mate and I have had long talks about death. She's two weeks away, we say: if the mate was to slack off maintenance for that long, death is certain. We know her a little too well. At this point, there is pretty much no choice but to go for the transplant.

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