Transplant timeline

[Sacha]

Looking to find out how long it takes to get listed for a transplant.  I have a GFR of 19 and am hoping to skip dialysis and go straight to transplant, hopefully with a kidney match from a family member.  I am fortunate to be healthy (except for well controlled high blood pressure on one medication) and am currently asymptomatic.

1. How long does it take to get an initial appointment at a transplant center?
2. How long does the initial evaluation take?
3. How long does it take to get blood work results?
4. How long does it take to find out if a potential living donor is a candidate for donation and a match?   
5. How long does it take to schedule surgery after a living donor has be approved?

Thank you for your help as I begin my journey through this daunting process.

[MooseMom]

Sacha, you ask very difficult questions because a lot depends upon the tx center with whom you choose to list. 

1.  A pre-tx eval is a lengthy process, so most centers have dedicated days for evals, say, maybe only on Thursdays.  The only way you'll get an answer is to call them and ask them.

2.  Your appointment will take most of a day.  Then they will give you a long list of additional testing that you can have done locally.

3.  Your blood work results will probably be available that same day.

4.  A lot depends upon how quickly your potential living donor schedules and keeps appointments for their tests/lab work.

5.  Again, a lot depends upon your donor and his/her schedule.

The bottom line is that you won't have a great deal of control over the whole eval process, so it's best to start early.

Good luck!

(These answers are based solely on my own experience.  Others will have different replies, I'm sure.)

[cariad]

Looking to find out how long it takes to get listed for a transplant.  I have a GFR of 19 and am hoping to skip dialysis and go straight to transplant, hopefully with a kidney match from a family member.  I am fortunate to be healthy (except for well controlled high blood pressure on one medication) and am currently asymptomatic.

1. How long does it take to get an initial appointment at a transplant center?
2. How long does the initial evaluation take?
3. How long does it take to get blood work results?
4. How long does it take to find out if a potential living donor is a candidate for donation and a match?   
5. How long does it take to schedule surgery after a living donor has be approved?

Thank you for your help as I begin my journey through this daunting process.

I'll try to answer these:
1. That really depends on the center. Call them, perhaps mention you are a physician. (I would use any connections you have without hesitation. These things matter in transplant more than most areas of medicine in my experience. If NYC is anything like LA, they are probably hellishly backlogged, but I don't know that area at all)
2. Eval should only take a day, but they will give you a list of tests you need to complete. At 39 and in great health except for your kidney, there should not be much more than a kidney ultrasound, cardiac tests, and loads of blood work. Once you give them results for all of your tests, the transplant team meets and discusses your case and decides whether or not you can be listed (which also makes you eligible for a live donor transplant). While it may seem like a waste of time to get listed, things do go wrong with live donors and it's good to know you are accruing time just in case.
3. Do you mean blood results for the crossmatch where they determine how good a match you are with your family member? I would say no more than a few days, although they have the capability to do it in an hour or so. (Forgive me if I define terms that you already know, I am not trying to condescend, just be as clear as possible.)
4. First step is the crossmatch. If all goes well there the donor gets a few tests done, if those turn up anything of concern, they may get more tests done. When everyone has had all of their testing they approve or deny the donor.
5. I went to Northwestern in Chicago which claims to do more live donor transplants than any other hospital in the country. Their transplant Medical Director stated that they could schedule a transplant in the same week as you are approved. Having gone through the process with them, I'd say that's a bit of an exaggeration.

Keep one thing in mind as you go through this: you sound like their dream patient. Young, otherwise healthy, live donor, medically educated, resources to get through the difficult weeks after transplant. There are still going to be hospitals with the gall to order you around and generally treat you like they are doing you a favour in deigning to consider you. No place is going to be perfect, but don't be afraid to listen to your instinct and walk away. I should imagine you have lots of choice in NYC.

Hope this helps, good luck!

[Joe]

As MM noted, the timeline will vary from center to center. My experience was:
It took a week to set up my initial evaluation appointment . We did the counseling part in the morning, and all the testing in the afternoon.
I still had further testing to do after the initial  cardio stress test, and such. Those took about 2 weeks to get scheduled and performed.
Blood work is usually back the same day it's taken.
Getting your donor cleared is going to depend wholly on their availability.
They will have the same counseling and blood stuff you did at the transplant center.
Then any additional tests the center wants to see. My donor was done with all her testing in about two weeks.
After that, it's a matter of when it can be done. My donor had some constraints that pushed us out a month, or so.

I wish you the best of luck!

[Ninanna]

Definately go through the process and get evaluated and listed and have your donors checked out. But if you are still doing really well and you don't feel that bad and if your gfr declines slowly, I wouldn't be in too big a rush to get transplanted right away. I had my eval at NYC Columbia, got my donor tested, but was able to go another 2 years before my function got to the point it was really bothering me. Unfortunately kidneys don't last forever so it was nice to squeeze an extra 2 years out of mine.

[jeannea]

I did my first transplant as living donor no dialysis. My mom donated to me. The tests can take a while but it partly depends on you. Some things you have to schedule and take care of yourself. Others you need a coordinator willing to help.

After that comes the waiting. Even with a living donor, they won't do the transplant until you are "sick enough". My mom and I were deemed a match and we passed our tests and then it was over 2 years. The transplant comes with risks so they won't do it if your kidney function is too good. Then once you're sick enough there are a few quick repeat tests for both of you and a renal arteriogram for your donor.

A few months to three years? I know, I'm a lot of help.

[cariad]

Definately go through the process and get evaluated and listed and have your donors checked out. But if you are still doing really well and you don't feel that bad and if your gfr declines slowly, I wouldn't be in too big a rush to get transplanted right away.

Even with a living donor, they won't do the transplant until you are "sick enough".

I agree with both of these statements. However, I was told repeatedly that I would not realise how terrible I had been feeling until after I had a transplant and started to recover. So, on the one hand doctors will tell you that you don't need to start dialysis until you feel really bad (or your GFR gets dangerously low, under 10) but on the other hand I was told I couldn't trust how I felt because my decline was gradual and I had adapted to the lower function. 19 does seem a bit too high to me to undergo transplant (or start dialysis) but this is where the person needs to decide for themselves if they feel bad enough to make the jump.

I was listed the moment my GFR dipped below 20, in 2007. In 2010 I had a preemptive transplant as part of a clinical trial, but my GFR was still 13 and I felt mostly OK. I probably could have lingered for years in the 10-15 GFR range. I thought the timing for me was about as good as it could have been. I was under the impression that since they leave the native kidneys in when possible (mine were removed long ago, so no experience with this) that the native kidneys may actually pick up a bit? Maybe I've got that wrong.

[jeannea]

When my nephrologist thought I was ready for transplant we did a 24 hour urine collection. That was the number that showed best that I was ready for transplant. My creatinine level was not as helpful because of my disease.

[cariad]

When my nephrologist thought I was ready for transplant we did a 24 hour urine collection. That was the number that showed best that I was ready for transplant. My creatinine level was not as helpful because of my disease.

Huh. I got one done about a year before transplant only to be told by a couple of renal doctors that those weren't very useful when you're GFR falls below a certain point. I guess they are going on the assumption that people below a certain GFR are not urinating enough to do the test correctly? I continued to urinate as normal until my transplant, but they still pretty well ignored the results of the 24-hour collection.

[MooseMom]

During all of my pre-D years, I never had a 24 hour urine collection!  Is that weird?  Like you, cariad, even at gfr 14, I was still urinating normally, but it was my other lab results that showed I was more than ready for tx.

Echoing what others have said, once your gfr drops below 20, you are eligible to be considered for listing.  The first time I went through an eval, it was because my neph (with whom I'd just had my first apt) believed that my renal function was going to rapidly deteriorate.  I went through the initial appointment only to arrive home and find a voice message from the tx center that I could not yet be considered because my gfr was above 20.  It wasn't until 8 years later that my gfr finally dropped to below 20.  From that point on, however, my gfr started dropping more rapidly.

I'm not sure what "sick enough" means.

[jeannea]

The 24 hr collection worked for me. I have recessive medullary cystic kidney disease. By the time of my first transplant I was drinking 9 quarts of water a day and peeing lots. This disease is like an opposite disease. I had to take 6 grams potassium (grams not mg) per day and eat lots of salt. I was not on dialysis but I was on the low protein diet. I could not keep decent electrolyte levels. So we did the clearance test and my result was 11 (normal is 100 or more I think). Shortly after we started the last minute tests for the living donor transplant. EKG, chest x-ray, blood tests, that sort of thing. It took about 10 weeks after that test until my transplant, partly because they only did living donors on Tues and the calendar was pretty full.

Sick enough is one of those subjective medical judgments. Are your risks higher getting or not getting the transplant? Yes, I know you probably meant that more in an emotional sense. But that Christmas when my neph made me come to the ER and almost made me do emergency dialysis, I understood. I had spent a week sitting on the couch not even able to stay warm. I could hardly do anything. Somewhere inside I could feel my cells dying, my body giving up. I know it sounds crazy but that was how I felt. For me, that defines sick enough. But I also know I'll be able to handle dying when it's time.

Sorry. This is probably thread hijacking.

[Deanne]

It took me about six weeks to get the evaluation appointment, and then two days for the initial stuff. After that, I had to schedule follow-ups that took several weeks. They gave me a two-page checklist to complete. I started scheduling the appointments immediately, but it still took a while. My evaluation was in early June and I was initially approved about a week after Labor Day. I say "initially" because I had to go on inactive status several times to do more stuff. I continued to accrue time so it was only an annoyance.

I had 24-hour urine collections fairly regularly through the years, up to the last couple of years when my neph said there wasn't a point to it anymore. I spilled protein and the collection tests were to keep an eye on how much I was spilling.