Thursday, December 17, 2009

I went to see the pulmonologist today.

I went to see the pulmonologist today. The news was bleak. My O2 level was very good but they say it is the CO2 that kills you, and that's not easily checked. Yet without checking they are very confident that my CO2 level is very bad, or soon will be. I believe they base this on the fact that my FVC has declined from about 50 percent in April to 28 percent now. I think part of that decline is because, unlike now, back in April, my back was strong enough that I could sit up, lean forward, lean backward, etc. But I must admit the bi-pap doesn't seem to be quite enough sometimes.

He felt it would be unsurprising if I die of respiratory failure any minute now, and wants me to decide whether I want a ventilator soon -- early January. It may sound like choosing between dying and the machine is a no-brainer. They seem to lean toward dying. CO2 builds up in the blood; you get sleepy, and you don't wake up -- that sounds about as good as it gets for anybody. But they say life on the ventilator can be miserable, and requires 24x7 support. The support is not covered by Medicare or insurance, but isn't terribly complicated -- suction as needed, reconnect a hose, etc.

If a caregiver messes up, you die, but without it you die. Certainly in the former case, the caregiver feels really bad, but they have to accept that you only made it that far because of their care.

So the question for me is -- how much do I believe the doctors in their assessment of the urgency and how much damage is done by getting the ventilator -- possible loss of speech, possible loss of swallowing and high risk of recurring pneumonia.