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Author Topic: Who would you choose to get tested first?  (Read 4572 times)

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Offline Yellobelle

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Who would you choose to get tested first?
« on: August 27, 2014, 12:16:29 PM »
My husband and I both submitted forms to be tested as possible kidney donors to his sister. The transplant coordinator says neither one of us has anything that would obviously preclude donation (not to say that something couldn't come up later during tests). They will only test one potential donor at a time. She wants to know which one of us would like to test first. I had thought they would pick the better candidate, so this kind of threw me. I thought they would at least cross type match both of us or something before making any decisions?

If it was you, what considerations would you take into account? Who would you choose to go first?

The donor coordinator specifically mentioned family history of kidney disease in his family, but dh actually is not genetically predisposed because he has a different parent. His bio parents actually do have all sorts of non-kidney health issues, but they are also old and eat crap. He himself is extremely athletic. We also don't know his blood type yet, which i feel is kind of a big factor. But they won't test it unless we pick him to go first. Has anybody with young kids ever found out the kids' blood types to factor in to the decision of which parent donates? I feel like if dh is type O, I would prefer to keep him as backup in case myself or our kids ever needed it.

We already know that I am a blood type match. I am more comfortable with myself donating since I have had a c-section and gall bladder removal, so I feel like I understand what I am in for. On the down side, I have a decent amount of baby weight to lose, but apparently I am already within their parameters. Still gonna work on that.

Financially, our personal savings are probably going to take a big hit. There is probably a little less financial risk with me donating. We do not expect any assistance whatsoever from the family, so childcare costs, parking, tolls, food costs could get ugly. There is a weird family dynamic going on...they don't even seem to be acknowledging that we are starting the donation process. We had to tell them to complete the medical histories, and there were zero offers of help, only "Why would you do it?"

So who would you start with? Or would you find a way to get dh's blood type? Or are there factors I am forgetting?

Offline Fr Pat

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Re: Who would you choose to get tested first?
« Reply #1 on: August 28, 2014, 01:13:21 AM »
     An easy (and free) way for an adult to find out his/her blood type is simply to donate blood to the Red Cross. It is, of course, a good thing to do in itself, but it also establishes the blood type.
     www.livingdonorassistance.org is a Federal Government program that offers some financial assistance to SOME living donors. However it depends on the financial situation of the recipient, and paper-work must be filled out. the transplant coordinator or social worker at the hospital would know how to go about this, but the process would not start until the transplant looks like it is going to happen.
     While it is illegal for a living donor to be paid for the organ, it is legal for the living donor to be reimbursed for all expenses incurred, including loss of wages during recovery. Fund-raisers can be organized for this purpose.
     I hope that some of this info may be helpful.
           best wishes,
              Fr. Pat

Offline Clark

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Re: Who would you choose to get tested first?
« Reply #2 on: September 01, 2014, 02:29:31 PM »
Note that the American Red Cross and the American Association of Blood Banks discourage people from using blood donation as a free testing service for blood typing or disease detection. Such motivations lead candidates to be less than completely forthcoming during the medical history question process, which is intended to protect the health of both potential recipients and donors. Studies have demonstrated that while most such people intend to somehow prevent their (potentially hazardous) donation to be blocked and not harm anyone, follow through is demonstrably less than 100%, and the tests all have false negative rates. Aside from this, such persons may be taking undue personal risk regardless of placing others at risk. In short, go to a clinic to get appropriate testing done as needed. Don't place yourself or others at risk to avoid a nominal cost.
Unrelated directed kidney donor in 2003, recipient and I both well.
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Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
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Offline CK

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Re: Who would you choose to get tested first?
« Reply #3 on: September 11, 2014, 05:34:49 PM »
It is a bit odd that they wouldn't want to know his blood type first, that's easy for them to test.  That being said, I am type A and my recipient is type O, so in reality, blood type is not necessarily the most important thing anymore.

Flip a coin?

Offline Yellobelle

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Re: Who would you choose to get tested first?
« Reply #4 on: September 12, 2014, 11:39:50 AM »
Update:

We tried to go to Labcorp and just get the ABO testing, but apparently it is AGAINST FEDERAL LAW to do a test without a doctor prescription!? I find that really obnoxious. So then we looked into the blood donation route some more, because we wanted to ensure that he was fully qualified to donate blood so as not to take advantage. But we all have colds right now, and you cannot donate blood when you have any kind of illness, so that option was out. So I contacted the donor coordinator and told her we were hitting dead ends, and she got us a prescription for the test AND a billing form to bill to the recipient's insurance. Yay!

Turns out DH is type O, which is best case scenario for everyone. I contacted the coordinator to let her know I wanted to be the first candidate. We would prefer to keep DH as back-up donor, in case I don't work out. This seems especially practical, since he has another sister and nephew also with pkd, and only he and I seem to be willing to even look into donation. Fortunately, my powers of logic worked on him. :-) I think since he is so active and his work is so physical, the idea of surgery is much more scary to him, so he might be relieved that I gave him a good argument. 24-hour urine collection kit is on its way and then they will schedule a full day of testing for me. Definitely no waiting around at our transplant center! Praying super hard that I pass everything with flying colors!

Thanks for all the resources/help you guys have compiled here. It's been really helpful through this process!

Offline CK

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Re: Who would you choose to get tested first?
« Reply #5 on: September 12, 2014, 07:18:13 PM »
My husband has PKD. His kidneys were 12 lbs each. When they took them out, the surgeons took pictures and one kidney was as big as the surgeon's head.  Those babies did their best for 47 years before they gave out.

You are wonderful to do this for your sister-in-law. No one in my husband's family offered (though to be fair, he didn't tell them he needed the transplant and his brother said he would have gotten tested.)

My stepson, 14, also has PKD-but we are hoping by the time he needs a kidney, there will be artificial ones available.

Offline Yellobelle

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Re: Who would you choose to get tested first?
« Reply #6 on: September 12, 2014, 08:55:01 PM »
My SIL had her kidneys removed recently; she has been on dialysis for over a year, but really isn't tolerating it well. We started researching donation last year, but we couldn't afford the lost income for dh and I was pregnant then, so obviously I wasn't going to work at that time! None of the other many relatives came forward in the meantime, and we believe we are in a place now that we can do it. Doctors are hoping to do the transplant about 6 months from now, but I kind of wonder if it will be that long since things seem to be moving right along. I am still not entirely sure how it is all going to work in case I am still nursing, but we can figure something out.

Thank you for your words, CK. I know people get all sorts of different responses when people hear they are a kidney donor, but the overwhelming response I have gotten is indifference. I think I just didn't expect the recipient's own family to act so *indifferent*! We mentioned the progress yesterday to my parents-in-law and they acted like they had forgotten that we even told them about it! SIL herself is a wonderful person, even if we aren't very close. Anyway, it is just nice to hear someone say that I am doing a good thing. And I am mentally adjusting to the idea of my gift being basically anonymous, because nobody really cares about what I am doing.

I started reading the book the reluctant donor on the suggestion of posters here. I don't really feel reluctant exactly, but I think it will be helpful with the experience of PKD and the weird family dynamics!

 

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