Transplant waiting-list?

[kristina]

Hello,
I am wondering: how long does it take to be registered on the kidney-transplant-waiting-list
once the final medical tests have been completed and the medical all-clear has been given?
Are there any additional meetings/investigations necessary?
I dare-say it varies from Hospital to Hospital but I just wanted to get an idea...
Many thanks from Kristina.

[Deanne]

I think it was just a couple of days after everything was cleared. It took 2 or 3 months to get through all the testing before that. It seemed like every time I thought I was done, they came up with something else.

[cattlekid]

I think it depends on how often the transplant committee at the hospital meets and what their case load is. 

[iolaire]

I'm very healthy outside the kidney issue, so getting tested and approved was fast.  My delay was giving my doctor the ok on being listed. My tests were fast. Hospital related was one half day, then a second with all the coordinators. Follow up items were vacines to be completed later.  Then there was waiting. I started with hospital visits on July 8 and was approved late August.

[kristina]

Thank you very much for your kind replies Deanne, cattlekid and iolaire, it is very much appreciated.
... My work-up has been successfully completed and I am currently waiting for the transplant committee to meet and let me know...
Thanks again from Kristina.

[nursey66]

For my hubby, he had to wait 1 year past his prostrate cancer diagnosis. It's usually 2 years but he was already 1 year out when his 1 st transplant gave out . We really think the treatment for the cancer, radiation , took out the kidney, function decreased greatly after the treatment.  They put him on the list, said even though he was inactive, he would accrue time. He has a PRA of 100% so when the rules changed in Dec 2014, he moved to the top for a perfect match. Got called 4 times, got the kidney on the 4 th call.   So he was on the active list about 1 year. Type 0. 100% PRA. We didn't think he had a chance in ---- to get. Kidney !  2 Siblings matched up fine , but the antibodies knocked them out . His 1 st kidney was from a Sister and lasted 11 years . They do make you jump through a lot of hoops, makes you just want to throw in the towel, but , the more you work with them, the better of you are in the long run.  It seemed to have been a lot easier when he had the living related donor, than this time around. He is 5 weeks post transplant and doing well !

[Simon Dog]

I've never heard of the xplant committee turning someone down, however, I am sure it can happen.    The entire interaction with all aspects of the xplant team - from my own doc, to the head of the transplant department, to discussions with the coordinator seemed based on the premise that approval was obvious assuming I had a source of payment.

At least we've come a long way since the days of the Seattle death panel.

[okarol]

My sister started dialysis a month and I told her to call and make an appointment to be evaluated for a transplant. She thought I was rushing things, she was just adapting to this huge life change. But I told her everything takes time so she made the call. It is 5 weeks before they could see her. Typically here in So. Calif. it can take 3 to 9 months to get listed. Luckily wait time is now based on dialysis start date, so she will be accruing wait time while she waits to get through the process.

[kristina]

Many thanks for your kind replies nursey66, Simon Dog and okarol, it is very much appreciated
and assists me to look forward to everything connected with "transplant-things".
"My" cancer-issue also held me back to be evaluated for a long time and
because of that I was not able to get on the transplant-waiting-list before...
... But hopefully all that is now behind me and my recent transplant-waiting-list-work-up went very well
and I look forward to the meeting of the transplant-team ... 
Many thanks again from Kristina

[Michael Murphy]

What's strange is in the first two years I was on dialysis I can't remember any one graduating through transplant in the last 4 months there have been five.

[kristina]

Thank you Michael Murphy for your kind input...
... It just goes to show that when being on the transplant-waiting-list anything can happen
and perhaps it's down to luck how the cards eventually fall ...
Thanks again and best wishes from Kristina.

[MooseMom]

By every indication that you've provided, I would imagine that any delay would be due solely to the schedule of the transplant committee.  Most transplant centers have committee meetings only on certain days of the week/month.

Good luck!  I'm very much looking forward to hearing good news from you about your official list date!

[Michael Murphy]

 What I find most amazing is the effect that each transplant has had on staff and patients.  Each time it has happened the mood in the center has been better for a couple of weeks.  I am not transplant eligible and it's made me happy to see each and every one.

[kristina]

Many thanks for your kind encouragement MooseMom and Michael Murphy
and hopefully there are some good news soon...
Many thanks again from Kristina.

[kickingandscreaming]

What kinds of things disqualify you for being transplant worthy?  It seems to me that if you still have whatever it was that brought down your kidneys in the first place that that would happen again.  Is that true?  No one exactly knows what caused my kidney failure as I am both diabetic and hypertensive.  My diabetes has been well controlled--just with diet and life-style-- for many years.  But my blood pressure runs high.  I have always attributed much of that to bad kidneys, so maybe if I didn't have bad kidneys I wouldn't have HBP.  Who knows?

How different are the odds for an older person (74) than for a younger one? 

Can anyone help me understand how the desensitization process works?   Thanks.

[Michael Murphy]

Diabetes is not a rejection reason, one of my fellow patients was a diabetic, he just got a double transplant a pancreas and a kidney about 6 weeks ago.  So now for him no more dialysis and no more diabetes.  He came back and was walking about a foot off of the floor. I think,I would be rejected due to reoccurring melanoma that I get every year or two.  The immune seppressants would cause the melanoma to take off and kill me.  No big deal, I have very fair skin and as a child in the fifties I would be sent out on sunny days because it was thought time in the sun was good for you. Oh well I still had a great time but now I am on a first name basis with my dermatologist.

[kickingandscreaming]

Diabetes is not a rejection reason, one of my fellow patients was a diabetic, he just got a double transplant a pancreas and a kidney about 6 weeks ago.  So now for him no more dialysis and no more diabetes. 

I would think there would be a difference between being a Type 1 and a Type 2 diabetic.  A new pancreas will "cure" Type 1 as that is clearly a problem for them.  With Type 2, although eventually the pancreas becomes compromised, it is more about insulin resistance, which doesn't really have much to do with the pancreas.  Although insulin resistance can and does eventually do in the pancreas.   But with "just" a new kidney, that wouldn't have any impact on the diabetes, so it could continue wreaking havoc in the body.  At least that's my take on it.