How to choose where to be listed for TX

[kickingandscreaming]

I got my periodic pep talk from my PD nurse the other day about how I should get on the TX list.  it occurred to me that I haven't the fogiest idea about how to choose the "right" hospital.  There are 4 hospitals in my area to choose from.  How should I make the selection?  What are good criteria to use?  What is the best tool for sorting through each one?

[Simon Dog]

One of the  MDs at Tufts summed it up nicely - all the transplant hospitals in Boston know what they are doing.  Any difference in success rates probably has more to do with the patient population they are transplanting than anything else.

[Jean]

K&S

I live in California and several of my family members have offered up a kidney for me, however, I was promptly told I was too old. I hope that where ever you live, that is not the case. I would think your neph is the one to set you on the right track. Best Wishes.

[kickingandscreaming]

My PD nurse knows how old I am and she says there are a lot of old people who die whose kidney would feel right at home in my old body.  I'm surprised they rejected you for your age.  Maybe they feel the kidney would be "wasted" in this situation.  I'm not even sure I want to bother with the whole business.







sp mod Cas

[Jean]

I know, and the thought of the $$$ for the lifetime rejection drugs, for however many years I have left is scary. I just had my 78th birthday in Feb and I was a year younger when they told me I was too old.

[iolaire]

I would look for convince I.e. Proximity. I just switched between hospitals that are within 20 miles of each other for one that's downtown and on public transportation and closer to work.  If I'm going to be going in there for lab work and the like a few times per week post transplant I want it easy to get to.  I've also not duel listed in a nearby (50 mile) center that transplants faster because my wife would need to stay in a hotel for a bit post transplant and I don't want to drive the 50 miles for a few times per week checkins. 

[tigtink]

Here are links to the Scientific Registry of Transplant Recipients reports that come out every 6 months for the transplant centers:

http://www.srtr.org/

http://beta.srtr.org/

The first is for the reports using the 3 tier system used in the past and the second is the beta site where they have published the new 5 tier system. The 5 tier system has more detailed data and a better way to rank centers by outcomes. I guess they got a lot of complaints from lower-performing centers about the rankings on the 5 tier system so they moved it to a beta site for further testing, but I prefer the new system to the old one. I would not make a decision solely on these reports but it is a good place to start. I would also suggest calling a couple of transplant centers with questions about waiting times and listing criteria to get a feel for them.

[coravh]

My PD nurse knows how old I am and she says there are a lot of old people who die whose kidney would feel right at home in my old body.  I'm surprised they rejected you for your age.  Maybe they feel the kidney would be "wasted" in this situation.  I'm not even sure I want to bother with the whole business.

The sad truth is that some places are more concerned with their stats than with helping as many as they can. I know that for a while, the center where I went got a lot of referrals from the surrounding regions. They had the reputation of "they'll transplant anybody".  What I saw was that if you (the patient) had a reasonable shot, then they (the docs) would take a shot as well. Ultimately, the technology is pretty much standardized. What you want to look at is patient feedback (RateMDs is pretty good if you can read between the lines) and I would simply take the time to talk to some of the staff and see what they're like. You are going to be dealing with them for quite some time with regular frequency.







sp mod Cas

[sahern]

Because I live in Alaska and there are no transplant centers up here I chose mine on location to family.  My first transplant 23 years ago was in El Paso Tx because my parents lived there.  This time if I have a living donor I will go to the Mayo Clinic in MN as I have family not to far away.  If it is to be from a cadaver because of time constraints it will have to be in Seattle WA.  The cost of staying around after the transplant is part of what makes my decision for me.

[kickingandscreaming]

Part of what stops me in the whole process is what will happen to me after the TX.  I live alone.  Have no family to move in with and I don't think any of my friends are in a position to move in with me or take me with them. So I have no idea how I will survive when I have a big surgical incision and can't drive or do much for myself.

Anybody else in this position who has figured out a way around it?

[nursey66]

That's a tough one , they want some one with you at least the first 2 weeks, and want you near the hospital for 2 months .When my husband had his transplant we stayed at an apartment 2 blocks from the hospital and it was a complex of nursing home, assistant living and elderly apartments . They kept a couple apartments for the hospital patients. It cost us 1250 dollars a month but was so worth it. We could of had a cleaning person and they had transportation to the hospital, as well as nurses and helpers on site to make sure you were ok . Also a grocery store, hair dresser laundry, chapel,bank, library and lunch served everyday. We didn't need all the extra services since I took care of it all, but maybe something like this would work out for you. Check with your clinic to see if they have something in the area. It was a blessing for us. We lived 100 miles from the hospital. I went home every other day over night and it worked out well for us. So I was with him only about half the time, but felt comfortable because the way the place was run, never felt he was alone.