Friday, June 13, 2008

The good, the bad, and the very bad

I'll start off with the good... Someone got a lung on Wednesday night!!! It was a guy who probably had pulmonary fibrosis or something, but he only needed one lung. And he's doing great, so that's excellent. Now for bad #1: a woman who had a heart transplant (along with the previous lung tx), died yesterday. I never met her, but I did meet her family in the hospital coffee shop, and they were SO nice, and excited about her transplant. Really sad... and bad #2 is REALLY BAD...
Tricia may have cancer, in fact, it looks like she definitely has it. It's a post-transplant cancer called PTLD. And she has to undergo a surgical biopsy today. (although with the time difference it's happening tonight) That means surgery and another chest tube, which is really the most evil thing in the world. I am REALLY so bummed for them. They've come SO FAR, and now this. They were just back home, and now she's back in the hospital. My heart and prayers really go out towards them. Please pray for them!!!!
Yesterday was very domesticated. Did loads of ironing, had to clean the kitchen real good, because it was quite a mess, had to go buy lots of food, cause the cubboards were empty, and of course had all that blood sucked out of me! Will get the results today, hopefully the adjustment in my meds has delivered the desired results.
Last night I went to a very interesting ethical discussion. It was about END OF LIFE CARE. Two of my Drs lead the discussion, and one had a hypothetical case study, and the other a real life one. I was more interested in my Dr Paul's hypothetical one, as it was about a 20 year-old CF girl, who had seen 2 older brothers die of the disease, and had decided that she did not want mechanical ventilation. However for some reason she had gone into renal failure, and by giving her dialysis there was a chance that her respiratory situation would worsen and she would need to be ventilated. She had also rejected the transplant option. So the discussion was on what treatment to give her, and how important her autonomy was etc. The discussion got more interesting when it moved towards transplant, and at some point someone was talking about how it would be wrong to persuade her into transplant when she clearly wanted to die or something like that... all that I can really remember was that I was really itching to say something, and so I did. I was pretty nervous, as I haven't talked in front of even a smallish group of people like that since high school, so I can't remember exactly what I said. I do remember saying that if I was in that situation I would WANT someone to persuade me into having a transplant, and that I would want to talk to someone who HAS had one, and that the medical options had probably changed since her brothers died. Well whatever I said, I seem to have made my point, so that's good.
I'm off to gym now, after I've had a small breakfast. The pic I put on is something that I found on Sam's (the girl who died because she didn't get lungs...) blog. Ironic.


MilePost13 said...

Thanks, Alice!!!

Anonymous said...

Alice , not only do you write well, you speak eloquently too!! Many attendees have remarked how it was crafty of us to lead the discussion from an "end of life" discussion to "another option".... point being we simply spoke your mind after others commented how paternalistic it is for a dr to suggest(or to persuade) a path of therapy to very ill patients...Guess that does make me "paternalistic". The ethicists had me a little confused as to why this is so bad? PGW

Bree said...

Excellent post deary!

I'm off to put my oxygen on!

Anonymous said...

Hi Alice. Straight from the heart as expected. So easy to read and elloquently to the point.
I think it is a doctors responsibility to encourage patients into a path that leads / may lead to a better quality life. Not to, in my opinion is unethical and uncaring. Interesting thing in my case was that the encouragement I received, pre op, came from my referring clinicians who had looked after me for >25 years and knew that BSLT was my only option for survival. Post op the encouragement came from Paul and Greg and Dr Su and Dr Pahad etc etc to say nothing of the nursing army in ICU and Section 7. I think ethics is all about doing the right thing, the thing that our Lord Jesus Christ would have us do, so whenever you worry about an ethical issue, just stop and ask Him. Works for me, and I've never been let down ever. What a Blog you run Alice! It's a priviledge to know you personally too. Love to you and yours, Peter Leid (CF Man)