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GAYLEP67 Posts: 757
11/20/12 11:42 P

My donor card is signed AND I've made it very clear to my family that I want everything that can be donated harvested from me when I die so that someone else might live or have a better quality of life. I hope your husband finds a good match soon!

DWROBERGE SparkPoints: (335,316)
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Posts: 77,417
11/20/12 8:29 P

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JULIA1154 Posts: 1,783
11/20/12 6:44 P

I am very sorry to learn of your husband's situation.

HELLENACKERMAN Posts: 193
11/20/12 5:46 P

Thank you for sharing your story! I have been an organ donor since I got my license at 16. A gentleman from our community had a kidney transplant and always was open about sharing his story and that sealed the deal for me!!

SASSYRED3192 SparkPoints: (10,424)
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Posts: 403
11/20/12 5:17 P

I have been an organ donor since I could legally make the decision myself. I really hope I can help someone out some day. I didnt realize so many things could stop you from donating when alive. I hope for the best for your hubby

ILMEL1957 Posts: 2,490
11/20/12 9:05 A

My daughter and I have made it known that we will be organ doners. Unfortunately, my husband isn't able to because of his health.

PARKERB2 SparkPoints: (129,515)
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11/20/12 7:23 A

It is a blessing to those who get it.

CMCOLE Posts: 2,667
11/20/12 7:22 A

it's not JUST blood type; but other factors, as well.
I was the ONLY sibling who matched (6/6 factors) for my sister when they were looking for a donation for stem cells for her.

So, while I realize it's exceedingly frustrating for you - and I really hope that you soon have a successful response - there must be legitimate reasons why those people were rejected as potential donors.

FENWAYGIRL18 Posts: 5,855
11/20/12 12:22 A

I always wanted to do that but was told I can't now that I have Lyme.... I feel for your hubby, my husbands friends has the same disease and wow he's been to hell and back!
He use to be a body builder but he had it so bad all the muscles in his stomach got out of whack some how cause the cysts were so big it pushed everything forward and now he has a huge belly like he's 9 months pregnant and he went to a concert with my husband once and the guards at the gate asked him what he had under his shirt... he was so embarrassed!
My hubby felt so bad for him, he's this little thin guy with this huge belly and has to use suspenders to keep up his pants cause they are so big for him but they fit the belly...
I hope your hubby is blessed and finds the kidney he needs! God Bless you both!

EOWYN2424 Posts: 5,770
11/20/12 12:15 A

A kidney transplant is not the end of the story, unfortunately. You have to take anti-rejection drugs for the rest of your life and it's super, super expensive!

It would be nice if once you get the transplant, you're good to go, but unfortunately, it isn't!

Edited by: EOWYN2424 at: 11/20/2012 (00:43)
BDH1970 Posts: 91
11/19/12 3:44 P

Sunday, November 18, 2012

I've been thinking of writing this for awhile now, but never seem to come up with the courage. Now's the time I guess.

My husband is 45 and is in end-stage kidney failure. He's got a hereditary disease - polycystic kidney disease, where his kidneys develop cysts - the cysts break - then develop scar tissue - the scar tissued part of the kidney dies. There is no cure, and no treatment. The only fix is a new kidney.

In April of this year, he started peritoneal dialysis, which allows him to dialise at home at night. He's able to work full time, and do everything he used to do, other than sit in our hot tub (because of his catheter). Minor inconvenience, considering how much worse it could be.

The reason I'm writing this is because he, and so many others, needs a kidney. His blood type is Type "O" which sounds like a good thing, because it's universal; however, he's a universal donor, not a universal recipient. He can only receive an "O". The Rh factor (+ or -) doesn't matter.

We have had 5 women (weird I know), not including me because my blood type is "A", go thru testing to donate him a kidney. My sister's gone thru the testing all the way to the last test, and two more have gone to almost the last. Luckily in Canada (and in particular, Alberta), we have free testing, and because my hubby's in end-stage failure, everything happens relatively quickly. The most frustrating of all tho, is that all of those women, in an age range from 35 - 45, have been disquailified for one reason or another. One had "pre-hypertension, and pre-diabetes". One had high cholesterol. One had an egg allergy. One had abnormal cells in her pap. And one had legitimate issues with her own kidneys. A very good thing is that each of them has discovered an issue they have in time to deal with that particular issue. Not very many people get that opportunity - I know. And I'm truly grateful that they all had that opportunity.

My issue is that you see and hear on the news, radio, or whatever media there is, about the importance of organ donation, and signing your organ donor card. Yet, when you have various amazing, generous, people offer their organs, out of the goodness of their hearts (only 2 of the 5 are related to us in any way), you'd think that one of them would be compatible. But no.

It's so very frustrating to me that the doctors ask and ask for organ donors, and specifically "live" donors becuase the organs are healthier, then we get 5 of them, and none of them are good enough. Don't get me wrong - I absolutely don't want any one of them to be sick in the future because they gave my husband a kidney - but what exactly are they looking for? All of these women are healthy, physically fit, people. Each of their individual family doctors are baffled by them being disqualified, because the test results they got were not results that would normally cause any alarm whatsover.

In all honestly, everyone's "pre-hypertensive, pre-diabetic" pre-whatever. No one can predict what will happen in the future.

The reason I'm writing, after my diatribe (sorry), is of the importance of signing your organ donor card. I think, as does my husband, that the medical professionals are more comfortable giving 'cadaveric' organs to recipients because, quite frankly, the donor doesn't need them anymore. My husband has said all along that he wants a cadeveric kidney because he doesn't want to owe anyone anything. There are so many people waiting for organs of all types, and some die waiting.

Luckily, here in Alberta, we are very fortunate to have the health care system we do, and my husband, even tho on dialysis, is doing very well, all things considered. It could be so much worse - we are very blessed, regardless of my frustrations.

If you're on the fence about signing your card, please reconsider.



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