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.

11 comments:

Cynthia Wilkinson said...

I don't know how I'd make that decision. I suppose that I would ask my closest loved ones to help me, and I'd pray for guidance. I don't like either choice, so maybe I'd flip a coin. I'm sure I'd want too many pain killers to make valid decisions anyhow. I tend to do that.

Sara Huston said...

Can you get a second opinion from another pulmonologist? That may help you decide whether to believe the first doctor in terms of the urgency of doing this.

Deedy Manuel said...

want a second opinion? O2 most important first,then Id be concerned about the other issues...what are you wanting to do?

dean furbish said...

Adrian, you are ever in my thoughts and prayers.

Tomorrow morning, twelve of us will be riding the Winter Solstice 200km. We will be thinking about you.

AHands said...

Cool! I love the way the air smells when there's snow on the ground. Gulp down some big lung-fulls for me! Did you know that I was born on 22 December?

dean furbish said...

Depending upon what kind of hurting the rest of the group inflicts upon me tomorrow, Adrian, I may have no choice but to "gulp down some big lung-fulls of air!" :)

No, Adrian, I did not know that 22 December is your birthday. Much of the time I'm guilty of wishing people a belated birthday. Thanks for telling me. Now I have the opportunity for the first time ever of wishing an early "Happy Birthday!" HBD, Adrian!

Rich said...

YoA, how does one make such a decision or even comment on it? Looks like you'll finish this journey before us, but don't wait up on the other side. We'll get there soon enough. I send you hugs and Love, and whatever travel upgrades I've earned this life. Peace.

AHands said...

Hey! Way to write a guy off, Rich !
Just for that, if I beat you to that great rest stop at the sky, I am Bogarting All the Fig Newtons before you get there!
Besides, there's still some alternative therapies to try... doctors don't know everything... if doctors are so smart, how come they never win the lottery?

dean furbish said...

Hi, Adrian!

A little surprise for you here:

http://ncrandonneur.blogspot.com/2009/12/yo-happy-birthday.html

Thinking about you!

Joe K said...

Yo Adrian,

Sending me prayers and good thoughts your way randonneuring bud. You sure made my China brevet a treat.

Decisions....decisions....decisions...

Knowing you, you'll make the right one.

Rich said...

No, can't write you off early. I've never underestimated your ability to go long! Keep pedaling...!