WHY DO I NEED TO TRY FOR A TRANSPLANT

[jeannea]

Cariad, that's a nice try but *I* have the best doctor.    I love my docs. They are so good to me. Hershey really is the sweetest place on earth.

[RichardMEL]

I'm kind of with MM here.

With my testing I did not feel anything like pressure re compliance or stuff like that, but then again having been on D they knew I was compliant with my meds and binders and all that already (from lab results) so maybe that was less of a focus.

When my sister was testing to do a live donation to me, they did include the "psych test" but honestly that was a waste of time in my view - at least the way it was done for us. What they did is the renal Psych got us BOTH in together and chatted for 40-45 minutes about feelings and all that kind of thing... and that was pretty much it. Now I did not personally view that as a very useful process, because I would have thought the better way to do that would be to get both potential donor and recipients in one at a time to personally give views and the opportunity, without the other there, to express fears or whatever. I mean if you're sitting in the room with someone, specially close to you, that you are contemplating donating to, you're unlikely to say "Gee, I am not so sure I can go through with this" - well some would I guess, but most probably would feel they shouldn't or couldn't in front of their loved one.

but that was just our experience. I am sure many others have had a much more thorough and "better" way of doing that part of it.

In the main though my testing was pretty easy in terms of being a recipient; I was already having regular blood taken via dialysis for testing and stuff, so that was cool, my heart and other stuff was tested once and found to be good, and I think I did a couple of other tests, maybe a ultrasound scan to test my arteries for potential connections and so on.. but that was it really. It wasn't that difficult really and at least I could understand WHY each test was needed and what it would help with.

Each case is different of course. As a relatively healthy 40 year old (at the time of tx) I had no other major stuff going on. Others will have their own medical situation requiring other, more or less sets of tests to suit their particular situation.

[cariad]

Well, to be fair, I also never felt like any place was trying to 'psych me out' nor 'push me to my limits'. I guess much of my experience just reads as a list of unprofessional or disturbing things that medical staff can say or do at an eval. It didn't necessarily affect me in the slightest, but again, someone who hasn't been through this might think that evals are supposed to be like this, or that they have no choice but to accept it. I don't know. Maybe I should just keep my mouth shut about these things, my experiences don't seem to match anyone else's. (Except USC. That one is so unanimous it's funny. Or chilling.)

A rundown of some of the more dire experiences I've had, and then I'll shut up about this:
USC: Coordintor's first words to me "We're going to be judging you, you know." Later in the conversation, I mention as a matter of friendly chit chat that I was struggling to find a good school for my kids. She snaps her fingers and says "I've got one! Bethany!" Before I knew what I was saying I asked 'Is that a religious school?' and she countered, with an appalled look on her face, 'Yes. Do you have a problem with that?' (Jesus she should have been sacked right then and there. Completely and totally unacceptable.) Then there was all of the 'Oops, lost your files again!' crap and the calling me at home to pressure me to scare up more live donors and the suggestion that they wouldn't give me a kidney off the list because I had a live donor. I did like their social worker more than any other, probably because he cut through the games and ended our conversation with "I'm approving you."

UCSF: The best of a weak field, but I do so love them. They did do something with regards Gwyn where they made him feel like he wouldn't be able to donate and I had to call them and tell them not to speak to donors that way. Don't really remember the circumstances, though.

Cedars: They were fine, too. The coordinator did call me at home and seemed a bit.... lonely? In need of a chat? It was a tad uncomfortable. Then we had to move out of California and the living donor coordinator flipped out and shouted down the phone at Gwyn. Oh, and the nutritionist fabricated what I said about a daily menu and made what I found to be a rather prejudiced remark, while the social worker *wrote down* that my brother was a coke addict, which is Not. Even. Close. to what I said. I have a real problem with people overdiagnosing something as subjective and reputation-damaging as addiction. What if he had decided to interpret something about my behaviour as addictive? It's not something to play around with.

Madison: My eval was actually fine, a few bits here and there that were ridiculous like wanting to perform the operation before I was anywhere near GFR 20, but their overall behaviour was friendly. Then we met J.P. who was the nephrologist for live donors I guess. He was a nightmare. His attitude was so poor that Gwyn and I were making "Can you believe this guy?! faces to each other through the whole thing. I guess Gwyn's blood pressure was a bit elevated and he shouted at Gwyn "Do you want to donate or not?!" (Our GP who knew perfectly well what Gwyn's blood pressure normally was got very angry when I told him this and blurted out "That's just RUBBISH!" It was a side of him I hadn't yet seen.) JP ended that conversation by turning to me and saying "I also work as a GP. I could be your doctor." (Gah! What?!) Then when I supposedly needed a biopsy I called their social worker to say that I never wanted to see this creepy doctor again could I get the other doctor, and she said absolutely. Of course, as if enough didn't go wrong on that day, who walks through the door but JP. They had kept me waiting for hours, only to tell me that wouldn't do the biopsy because it was too dangerous (they couldn't tell me that on the phone?) and then JP spent what seemed like forever saying I'd have a stroke if I didn't get my blood pressure down (thanks, that should help those readings!) and that I would die of GVHD if I ever attempted the trial. We also knew someone locally who lost her husband's kidney within a year due to their error. Weirdly, she kept seeing them. (I checked Madison's site and the JP that I saw is not listed, so if someone else has those initials, it is a different person.)

Northwestern: As disorganized as a hospital could possibly be whilst still functioning. It's a miracle that anyone gets a transplant there, but they do. Somehow. It's a different world being in the clinical trial, so once I got enrolled in that life became so much easier. When I described my JP experience in the vaguest possible terms to my surgeon, he immediately said "Is this Madison by any chance?" (Wha.... yes....) "Was it J.P.?" It's a small field, be careful what you say and to whom.

At the end of the day, it's all anthropology to me so it fascinates me even as it repulses me. Like the life or death committees of dialysis history, they are judging you based on their social values, and though I knew it wasn't going to affect me, it still offended me and continues to do so today. However, I frequently say how lucky I am, and when it comes to ESRD I believe that entirely, so please don't waste any sympathy on me.

[cariad]

Cariad, that's a nice try but *I* have the best doctor.    I love my docs. They are so good to me. Hershey really is the sweetest place on earth.

Love hearing this! What a marvelous argument we could have on this subject.

I believe once you find that rare doctor or hospital that you can actually look forward to seeing, you'll never settle for anything less.