I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Potential Donors => Topic started by: Cari63 on August 27, 2009, 11:16:58 AM
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ARGGGGGGGGG lets do this already!
I am committed to testing for someone in TX- Im in Ga- Tomor makes it three weeks waiting on mail.. Seriously? I can get mail from china faster. Im already tired of waiting. I just read that it can take up to nine months or more to get this process done. Im in week three and tapping my foot. After I do the initial how long to find out if I go on from there, another month? Then another test then month and another test then another month and so on?! Why do people have to wait so long!
Honestly I guess I thought two or three months tops to find out if I was a match & donate if I am. I cant even begin to imagine what will be going on in ten months- I was hoping to be matched before Christmas.
Ok so I am not a patient patient, I guess, but I just thought that this sort of medical thing would go faster than "normal" every day medical things. {SIGHS}
Does it go faster when you know the person? (spouse etc) and if I just go down to TX if the initial blood work is good, will things move faster?
I know some of you are probably laughing at my impatience, and thats ok, I laugh at myself too...but you gotta admit this all could be done much faster lol
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Have you posted on Living Donors Online? You'll get a good idea of time frames from experienced donors. http://www.livingdonorsonline.org/cgi-bin/dcforum/dcboard.cgi
Every center is different. The first one Jenna was with was excruciatingly slow and hard to reach, but the second one was efficient and proactive in evaluating the donors who were to be tested for Jenna (and that's where she got her transplant too.)
It's really up to the donor to be sure the transplant team is progressing forward. Don't be afraid to ask for status updates.
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Hey Carrie,
The waiting is frustrating for everyone. We can all relate to how it feels to want to get something done in the transplant world but be thwarted at each turn.
Karol is right. It could and probably should be a lot faster, but if you look at it from the center's perspective, these initial contacts from potential donors are a dime a dozen. Many people will either be eliminated or just stop contacting the center, which to them is the signal that you are no longer interested. The hospital simply will not take the lead on this because they do not want to appear to be pressuring the donor.
What exactly are you waiting on by mail - health questionaire (could it be emailed or faxed to you?) or blood tubes? Do you have a donor coordinator to contact? I would call the hospital in Texas and ask them to resend your mail. Once you send your blood, they will do the intial crossmatch and battery of tests for every disease you can name, and then you should have your results in one to two weeks (crossmatching takes a while, and you will need to have your blood drawn early in the week in order to make sure it gets to them well before the weekend).
After that it gets somewhat easier. You will be assigned your tests, which depend on your personal health history but will certainly include a kidney MRI or CT scan, an EKG, and the gyn tests if you have not had those done in the past year or so. Oh, and my husband (also a future live donor) had to do a creatinine clearance where you collect your urine for 24-hrs and you usually have to store the container in your fridge. He did not need any of the more invasive tests, though.
You can usually get the eval portion - when you meet the doctors and the social worker- over with in a day, but you will have to go to Texas for that. I have found from watching how these hospitals treat my husband that they take him more seriously the further into the eval he gets. My husband started his eval process around the end of May and was cleared medically about a month ago, so it can be just a few months under ideal circumstances. First you need to get that mail from them!
Good luck and hang in there! :cheer:
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Yep, what Cariad said.
At a local seminar I went to last year put on by our transplant team they stressed one of the reasons they take 6 months or so to do transplant testings and evaluations is apart from the time it takes to do the tests and get results and all that that the time lag is deliberate to give all parties time to properly consider how they feel and where they are at. It's not like giving $10 to a guy on the street because he wants a beer. It's a little more serious and far reaching, and they want to make sure that donors and recipients are 110% confirmed and comfortable with their wishes and the process. Call it an extra long cooling off period if you will.
It's frustrating for sure and annoying to be involved with - specially when you are waiting on something (obviously I've been on the end of waiting to hear if donor tests have been OK or not) but I understand the reasons for drawing it out a bit since you don't want people making snap decisions they may later think about and want to change their mind on.