Transplant List.

[fireguy]

Only been on dialysis past three years, made do with apox 25-30% function of kidneys from 5 years old to 44 years old. Doctors have been talking transplant since early teens but were leary because of ostomy

[livecam]

One strategy to get that kidney sooner is to list in multiple places.  I live near Los Angeles and the wait at UCLA where I was originally listed is longer than in smaller communities.  When I asked my HMO about the possibility of doing this the answer was that it was possible at other transplant centers where they had contracts.  I immediately got listed at UCSD in San Diego which is where the transplant ultimately occured.  I went through the entire workup at UCLA and those results were accepted by UCSD.  My dialysis unit submitted monthly blood samples to both centers for tissue typing etc.  I never met any of the medical staff in San Diego before the big day came along. If you do list at a distant center be prepared to get there and to be available for followup visits for a period of time after the transplant.  In my case the drive to San Diego is about 150 miles each way.  I got pretty good at leaving here around 5AM, being at the hospital for 8AM labs and Dr. visits and would be back home by about 1PM.  Followup following the 3 month period after transplant has been handled locally here.

[okarol]

 

[kitkatz]

List? What list? You mean there is a list? 

[stauffenberg]

In all countries of the world the waiting time for a transplant is rising as the number of new dialysis patients increases while the number of donor kidneys remains stable.  This is why many transplant programs use highly arbitrary, medically unjustifed criteria to exclude people from the list, just to keep the numbers down.  People with excess weight, excess age but good non-renal health, and 'compliance problems' because they cannot control their fluid intake should really be accepted for dialysis.  It is particularly silly to imagine that because someone cannot torture themselves to drink about 1/4 of the normal fluid consumption per day while on dialysis that means that they cannot discipline themselves to take some pills twice a day with a transplant!

In Canada the waiting period for a kidney is absurdly long at 8 years.  In the U.S., some areas are much quicker than others, and I have heard that in New Jersey the list is shortest.  I had the option of enduring a longer wait for a new kidney in Canada or having a much shorter wait (about half as long) in the U.S., but I opted for Canada, since the death rate among dialysis patients in the U.S. is double what it is in Canada.  It is an interesting dilemma for gamblers: run a higher risk dying while on dialysis to get out of it quicker, or run a lower risk of dying on dialysis but have to endure it longer.

I found my kidney transplant to be not at all stressful, and after three days in bed I was able to get up, fly back home, and start work two weeks later.  The stress of surgery should not deter anyone from getting a kidney transplant, especially since the death risk in the operation is so small -- only one in 3000.

For those with the courage and the money, you can always get a transplant in two or three weeks if you are willing to buy one in China, Pakistan, or the Philippines.  If you happen to be an Iranian citizen, you can buy one from someone without even leaving home.

[KT0930]

the death rate among dialysis patients in the U.S. is double what it is in Canada.

My husband was reading an article several months ago about the death rate of US dialysis patients vs. other places (especially Europe). There are many reasons for the higher death rate here: 1)we put older, sicker people on dialysis, including HIV positive patients, which other countries don't do; 2)we run shorter treatments. It's an agreed upon opinion that we Americans are impatient. Our dialysis treatments (in-center) tend to run 3-5 hours, 3x week, whereas other countries use 6-8 hour runs more frequently (4 or 5 times a week, can't remember for sure).

So yes, we probably do have a higher death rate in the US, but always ask what ISN"T being reported with the numbers?

Just my 

[stauffenberg]

In the countries where I am familiar with dialysis -- England, Germany, and Canada -- all of which have socialized medicine, everyone who wants to go on dialysis is put on dialysis, whether they have HIV or other severe co-morbidities, and yet their yearly death rates are in the 10-13% range, about half the rates in the U.S.  I could not detect any age difference between the patients in American clinics and in clinics elsewhere.  Also, the shorter treatment times in the U.S. are so that the for-profit treatment centers can make a bigger profit by treating more patients in less time, not because of the greater impatience of Americans!  People are people all around the world, and the patients I have seen at dialysis are just as eager to get to the end of their treatment sessions regardless of the color of their passports.

Keep in mind that there is a huge amount of politics surrounding dialysis and the for-profit healthcare system, so the capitalists making money off of patients' misery by delivering minimal dialysis treatment in the U.S. try to camoflage what they are doing but pouring out as many specious and misleading arguments as they can dream up.

[okarol]

 

[lola]

Otto's been on the list since March 2007. We found out yesterday that because of his PRA he needs a perfect match, so he'd be bumped to #1 if one becomes available

[pelagia]

My husband was first listed in February of 2005, but I don't think his function was low enough at that point to have priority.  He went inactive about 6 mo. later.  He ultimately changed transplant centers and had to begin the process over again.  The new center wouldn't put him on "active" until he had his PKD diseased kidneys removed.  The doc felt the nephrectomies were necessary for a good outcome with the transplant because the diseased kidneys were so large.  They were increasingly crowding out everything else, such as his lungs.

The need for nephrectomies as a step to get listed introduced an new issue.  My husband still had remnant kidney function.  I know many out there understand the value (physically and psychologically) of being able to produce some urine, no matter how small.  Giving that up voluntarily was a very difficult thing to do.  So he was inactive until March 2008 when he had his nephrectomies.  He moved ahead after he learned that my brother-in-law was willing to donate. 

So, not sure how to answer the survey.  Any suggestions?

[Chris]

Never saw this one.
My first attempt to be on the kidney list was from a hospital that was reccomended in August of 99 and listed by October. As I was asking more questions, I found out that there was a pancreas transplant also, but the hospital did not do one yet and the coordinator asked if that I found any information that was good, to bring it in. When she said that, I decide to look for another transplant center, I later found out that she was fired. So in Feb of 2000 I was listed for a k/p tx at my current center. Found out I was taken off the list by mistake because UNOS had me listed as getting a transplant, when my transplant center calling me to ask if I had a transplant. Apparently they were not getting blood samples ether that I was not aware of (I never looked when they took blood when I was on dialysis). Within a couple weeks I got my transplant. When they called, the first question I had was "Do you have the right person?" and the center asked "Do you want a transplant, then get down here" So my time on the list exactly is unknown due to the snafu, but definitely less than a year and a half.

[KT0930]

I was on for 11 months. From mid-February 2007 until January 9, 2008.