I had been a little bit nervous, because one of my former colleagues' husband went into liver failure shortly after she had retired. His was an acute toxic failure, and by the time diagnosis was made and he was listed for a tx, he was simply too sick. He passed away within a year.
I thought the time would be awkward, but she is such a calm, open, and giving person, that it wasn't. And since the whole experience is still rather fresh for her, she was able to ask some really good questions.
As we talked (and of course there were about three million other interspersed conversations) I began to realize that she had had the "crash course" in transplantation, and how that was so beyond my frame of reference, and I had no sense of relation to her experience vis a vis timing. I mentioned this, and her response was a little taken aback, for she thought that a year was really a long time to be in the process.
It made me think last night. If I had only had a year, or less, to come to terms with the whole idea of a liver transplant, I don't know if I would have done it. And in hindsight I would doubt my ability to survive.
When I was first referred to see the hepatologists at the UW, I thought that it was for a, oh, I don't know, a second opinion, or news on research and new drugs, or an exam or a prognosis. The ramifications of going, of getting into the "system", just didn't occur to me. Dr. W recommended that my spouse go along... which was the first time he'd come to a medical appointment with me. I think that Dr. W thought that I would see his long-time friend and colleague, the senior member of the team. I think he thought that we would have a chance to talk to him before going to the UW.
Naturally, none of that happened. I took on all the stress for two of us, finding our way around the corridors of the UWMC (which has been in various phases of remodeling since the dawn of time), through blood tests, waiting for results, having a physical, meeting with nurses, interns, fellows, and then the fellow and the hepatologist, Dr. K.
I've gotten used to the brevity and absolute directness that many health professionals approach patients with, and on the whole I really respect and appreciate it. However, I think the first couple of words out of Dr. K's mouth were "well, looks like we'll call the social worker and have you interviewed for a transplant."
Oy. I did not react well. Transplant wasn't even in my solar system, let alone on my radar. I think my reaction (coupled with the cold sweat that ensued from the person sitting next to me) probably colored my opinion of Dr. K, but I developed a rather venomous dislike of the man within the next 2.4 nanoseconds. I found him to be supercilious, pompous, rude, and unkind (add to this that he is well within a decade of my age). My bristles went all-out and my nails were barely sheathed.
I feel sorry for the social worker who saw us next. I don't even remember who she was, because I had shut down during the half hour we waited (in the exam room) for her arrival. Stunned silence is never very comforting.
Over the next several days/weeks/months I faced all the following:
- I didn't feel deserving, that there should be someone who deserved a tx more than I.
- I didn't like the way health care is handled in the US and was embarrassed by the fact that I'd had so many more opportunities and had such better insurance than others.
- I was sure the docs were wrong and that genetic research would prove my salvation.
- The UW was more bureaucratic than even the federal government, and I found it inefficient and frustrating.
- I really wasn't "that sick". I'd always been "fine" and would continue to be so. I could handle it.
- The thought of waiting for someone to die was too macabre to dwell on.
I know there were more, but those were the first that lept to my mind. And most of them were not resolved until the last year or so, and a few are still in the file folder in my brain entitled "things I don't think too deeply about" (they share a space with pork, public restrooms, unfair labor practices in shoe manufacture, and the sex lives of relatives).
My opinion of Dr. K stayed that way for, well, I'll estimate about 5 years. It changed gradually (especially with the kind venting support Dr. W offered) stemming from the point at which I - while in one of the endless waiting periods between appointments - looked up from Foucault's Pendulum to see him shuffling down the hall blissfully snarfing a king-sized bag of peanut M&Ms.
Since then, Dr. W has retired, and Dr. K has left the UW. He is now my "regular" liver doc, and I like him a great deal. I would like to think that he has matured and mellowed being in a non-academic setting, but I think the better view would be that I've grown up. He still can't call me "kiddo" though!