Live transplants - how long did the tests take?

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Live transplants - how long did the tests take?

Postby Kelly » Wed May 05, 2004 6:30 pm

Hi all

As some of you may or may not know, my husband Pete is having tests done with his brother for donation. However, we keep getting all sorts of obstacles in the way and lots of different excuses!!

I would love to hear from all of you out there Donar or recipient to give me some indication of how long your Tx took, from the start of the tests to the Tx taking place.

I realise that all cases are different, but any information would be much appreciated as I am considering taking this further - we have been messed about far to much!!

Thank you all

Kelly X
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Postby SteveUK » Wed May 05, 2004 8:33 pm

Hi Kelly :)

My mum gave me her kidney May 2003. It was about 6-7 months prior to this that I/we first had the tissue typing test. It does take a long time, from my experience, there are alot of other tests to have as well, such as angiograms, 24 hour urine tests, scans, etc. They will just want to cover all areas and minimise any risks, such as underlying or hidden health problems. It can be quite soul destroying knowing you have a gift to come, and having to wait a long time for it, as it felt for me, but good things come to those who wait I suppose :)

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Postby JMan » Wed May 05, 2004 9:27 pm

I seem to remember it was about 6 months'ish when my dad was written up.. This was some time ago.. A cadavar turned up a very short time before I was due to receive.. I got that instead.. Dunno wether it was a good decision but it wasn't mine (I was a child back then) the kidney worked soemwhat but eventually packed it in rather spectacularly (unpleasantly) after about 9 years..
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Postby Anne in Va » Wed May 05, 2004 9:51 pm

Hi,

Like you said it is difficult to give an exact time frame. Blood tests can be done right away but with other more involved tests such as scans etc you are inevitably at the mercy of the appointment wait list. Also time may be affected by any possible problems a test may indicate. These unforseen problems may require additional testing to make sure the donor is healthly and will not be compromised by donation. I know it is very frustrating when things just seem to be plodding along slower than you would like. Talk with your doctor/coordinator and ask if testing can be speeded up.

good luck, Anne
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Our Experience...

Postby Rachel in NY » Thu May 06, 2004 12:27 am

Hi,

In my case we found some distant relative with my blood type who agreed to be tested. My situation became kind of critical, and we needed a kidney immediately. Needless to say, we were told that by pushing it and with the right amount of "pull" (its not what you know, its WHO you know) we can get it done in 2 months provided no issues come up. Well he got started with it all, but then I got a cadavar kidney, which is thankfully performing quite nicely. (thank you krystyl). The kidney became available sometime around midnight ~ and at 5am on the operating table it was in me and functioning.

It may work differnetly in the US though. Not "may" - but probably "does". It also helped that in our case the potential donor was young, fit, and healthy - with no known medical conditions. In many cases donor testing drags and drags bcuz of unforseen issues such as the donor being overweight, high cholesteral, etc.

Good luck!! Stay tough and don't let anyone give you the runaround. If they see that you're on top of them they'll eventually get the message.

~Rachel
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Postby Carolyn in CA » Fri May 07, 2004 12:27 pm

Richard's son is being tested and it's been going on for about a year now. Tests for Richard, then tests for Tony, then more for Richard, etc. We are dealing with UCSF in San Francisco. I know that they are just trying to protect everyone with the best workup possible. This makes the wait bearable. And everyday that we wait, Richard may get a kidney from the waiting list and Tony may not have to have the surgery. So-o-o we are trying to be patient, even though it's difficult.

Good luck to you!
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Live Transplants

Postby R30 » Fri May 07, 2004 3:02 pm

I have just been told by my Consultant that I may be eligible for a live transplant within the next three months. My mother is commencing testing at Southmead on 21 May, and provided they find nothing wrong with her, I should have my "new" kidney by the end of the Summer.

I believe in the UK around 6 months in the average wait period for a live related transplant.

Hope yours goes well.
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Postby johnsor » Fri May 07, 2004 5:13 pm

I knew I would need a second kideny transplant in Oct. of '02 and had to rush through the process to make a mid May date '03 (7.5 month process). In retrospect the issues are many. Fisrt you have to have 20% function (transplant list) before one can get the major wheels of testing into motion. I work in an industry where projecct time lines are MANDATORY to launch projects on time. The medical community has NO concept of this need for timeline. Example: many people will require several tests prior to transplant, but because they are not usually desparately sick as a heart patient, colon patient or in need of emergency cat scans, they are usually a lower priority for testing. The same with donor (living) since they are usually in good health and become lower a priority for testing in the big scheme of things. This can become an issue because one's kidney continues to fail and is NOT factored into the equation for priority testing. I attempted to expedite the process, but still came up short and had to go on dialysis a second time. I needed a blood transfusion because my kidney had failed and the tx center delayed the tx because of potential antibodies to the new kidney and said they could do nothing about that situatiion. The fact of the matter was the testing, which they controlled, took too long and had they done it in a timely matter, I would not have needed the transfusion or the dialysis. I would have waited another two months to transplant had I not threatened to move my "transplant business" to another center. My advice is to push on centers (tx coordinators) as much as possible, 8) because if you don't, they take their sweet time to get things accomplished. God's speed for you!!!
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