Transplant evaluations... I have next to nothing to do???!

[RichardMEL]

Hey all,

I had been reading here about all the various tests and whatnot that donors AND recipients have to do prior to a transplant, to make sure you're A-OK to give and receive...

Well, my lovely sister has started down the path of testing for donation (as I think I mentioned somewhere else)... and so she has been doing the blood tests, cross match/tissue typing, bladder and kidney ultrasounds etc and she has some more to go...

Now I asked my doc the other day what about me... what do *I* have to do.. expecting heart tests and god knows what else.. He just said I'd have to give more blood for a 2nd round of cross matching (big deal) and perhaps see a urologist, and the psych... but that was about it.

I'm surprised... maybe it's an Australian thing but they seemed quite laid back about any requirements for me to accept a transplant... i guess because generally I am pretty healthy apart from the CKF? I'm not sure... but I am surprised that really I have to do relatively little in terms of this.

What are others experiences with this? I'd specially be curious to hear from some of the other aussies in this group.

Oh doc says if eveything runs OK, and sister can donate (and doesn't change her mind or anything in the meantime etc) that we could go for the transplant within 2 months!! exciting.. and scary!!

[livecam]

That sounds great...you must be in very good shape.  Sounds like smooth sailing for you.  Best of luck to you...we'll be reading about your transplant soon!

[Sluff]

I do hope your turn is soon. 

[charee]

Hey Richard My husband and I started the testing a few months ago We both had a blood test from Aust red cross, and while we were waiting for the results I started to have other tests Bone scans, pelvic ultrasound, mantouex test(TB), THEN the results came back from the blood work we failed that one but there was another test we could have so more bloods done, DR decided to stop all my other testing til we got the results but still had to have an appointment with a heart Dr and dentist vist  to go , the results came back and we have to many antibodies,so no transplant but to get on and keep on the transplant list i still have to have all those tests done, I am from NSW but i would have thought you would have had them all done when you got listed, also Russell(husband) had to have all the tests to but they told us not to start his til we got the blood work confirmed just in case we didn't match.Good luck with the testing

Cheers Charee

[angela515]

You most likely wont have to do anything until ll blood tests are done. They dont want to waste time on tests i everything dont match up with blood.

[kitkatz]

Good luck. I have been run through the mill around here.

[RichardMEL]

Thanks all,

Charee... no I didn't have any tests like that when I was listed.. I have had a few ECG's as part of a trial I was involved with, but that was it. I had my wisdom teeth out when I got my fistula but other than seeing the dentist on a regular basis have had nothing mentioned from the doctors...

so it just all seems a bit strange that according to my main neph I don't really have anything much else to do apart from provide some more bloods for another cross match test (or whatever it is called when they mix the two sets of blood together) and the psych test.

Given all I have read here I am surprised they don't want more.. though I would not be surprised if I get a call from the transplant co-ordinator at some stage telling me I need to do x, Y and Z!

I wouldn't say I'm super healthy.. just average really.. but fingers crossed for things to progress.. even if I have to go and do a ton of tests!! I was surprised when I asked and the doc pretty much said no!

Thanks all!

[angela515]

Is your only medical condition your ESRD? (And the cause behind it of course) meaning, do you have any other medical illness's besides whats caused your ESRD? If not, then you wouldn't have lots of test's done. Most people have to have more testing because of other medical conditions and issues with their medical status at the time.

[Jill D.]

I assume you had some tests done for your transplant evaluation - like a stress test, kidney x-ray, EKG for instance (besides blood tests)? After my evaluation, my sister was determined to be a match, and then went through her tests. I didn''t need to do any more tests while she was being tested since I had already been approved to have a transplant.

[paris]

Eavh center seems to have their own process.  UNC wanted me to be completely evaluated first - ekg,stress test, dental, ultrasound,etc. Johns Hopkins is working on the donor part first and Carolina Medical Center is working on tests for both of us.  Very confusing -- I am just along for the ride and do what they tell me!  Good luck in your journey.

[RichardMEL]

I assume you had some tests done for your transplant evaluation - like a stress test, kidney x-ray, EKG for instance (besides blood tests)? After my evaluation, my sister was determined to be a match, and then went through her tests. I didn''t need to do any more tests while she was being tested since I had already been approved to have a transplant.

Well that's just the thing. I haven't *had* a formal transplant evaluation. Perhaps an informal one has been done by the docs in charge. I have no other obvious medical issues going on apart from the ESRD. My heart is aparently good. I have no diabetes... I spoke to the dentist this morning and he said my teeth were "under control" (hmmm )...

I am more than happy to not do tests, but then a little concerned since most others seem to do these stress tests and the like, and if I'm not (yet, anyway) I wonder if perhaps that could come back to bite me in terms of something being missed that perhaps should be tested for.

I asked my neph the other day when I saw him and he was pretty laid back about it and didn't seem to think there was much to worry about....

I could always drop a note to the transplant co-ordinator, but I thought I'd see what the general concensus was here before bugging her

[angela515]

Everyone who is placed on the "List" has to go through tests, its a requirement. Not everyone has the same tests done... like I said, it depends on your medical condition.

[kimcanada]

I had my first meeting this Tuesday, and this is my list...

*Blood work - To see if I am predisposed to diabetes
*PAP
*Dentest Visit

Thats not so bad, most certainly not what I expected

My transplant is going to happen in September they are thinking

[charee]

Another one i forgot we both had was the diabetes blood test , they told me that was a standard test for everyone .I think you need to ask more questions just my worth.

Cheers Charee

[angela515]

I never had a diabetes blood test.. must not be a standard in the US unless its suspected.

[Jill D.]

There may be different approaches in the US than in Australia, although as Paris stated in her post, it seems to vary from hospital to hospital in the US. It seems like there would be standard tests for anyone being evaluated for a transplant, and that the evaluation would take place before screening and testing any potential donors (I mean, why have them go through that if, for some reason, a transplant isn't an option?) I was evaluated in two different states (Michigan and Minnesota) and both times had my tests done before my donor, so I figured it was standard procedure. Both places did the same basic tests, but of course Mayo Clinic was much more thorough. I am a very healthy person aside from my ERSD as well, but I think what they wanted to check were my vascular system and my heart, and I had the standard cancer screenings such as a pap and pelvic exam and mammogram (I even had my colon checked at Mayo...what fun!)  I also had to have a dental exam within the year.
If you have questions or concerns, you should continue to pose them to your neph until he gives you answers, or find someone who will (like your coordinator).
It is very confusing, so ask, ask, ask!
Good luck!

[Sluff]

You need to take charge of your situation, ask questions otherwise your team will think you in agreement with them, ask if they will be expecting anything from you.