I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Run8 on September 09, 2008, 04:40:53 PM
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I'm am having a terrible time with My wife and the rest of my family, because they don't understand why i will not accept a living donor. I know not everybody has family that can donate or even be tested for a match. my family on the other hand is very large, and i say large i mean large. My grandmother has over 100 grand and great grandchildren. I never had to ask twice or even ask once if they (my family)would be willing to donate.but that is not my problem is that i am afraid that it might not be a success.That i might reject, and then a good kidney will have went to waste. I also feel that it is bad enough to have to watch me go though this that i do not want them to feel any discomfort or pain that comes with donating a kidney.Tell me , am i wrong in feeling this way. Am i selfish in wanting a kidney and pancreas, or should i just accept a kidney.I am also thinking of the future, what if my kids need one, Mine are shot so that is out of the question. They will need each other and their mother, that why i told my wife she could not donate.The same with my sister and brother they each have children that my or may not need one. Just taking the safe course and thinking what if. Am I WRONG.
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If you need a kidney and pancreas then of course, a deceased donor is the only way to get them at the same time.
I don't think there's a right or wrong answer. Many feel people feel the same as you do, not wishing to put a living donor in the position of donating to you.
The wait time here in Los Angeles for a deceased donor kidney is 5 to 7 years, if you're lucky. Being on dialysis was not easy for our daughter, and we hoped to find a living donor. Nine family and friends were tested before a stranger offered, and ultimately donated to Jenna.
You are fortunate that you have the choice, as many people have no one offering to be tested.
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run..there is no right or wrong as I also have been told...I feel strongly about no transplant and definately NOT a living donor for the same reasons you listed. All the surgeons I have spoken with have agreed with my feelings/reasons but I do know many people also feel strongly for a living donor..that is why everyone has to make a decision. I am sure you will make the right one for you.
Ann
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I also do not think there is a right or wrong answer. There are lots of perspectives presented in the threads of IHD. You can use the search feature to find them (from the forum home page). Also, this site livingdonorsonline.org (http://livingdonorsonline.org) has posts from those considering donation and others who have donated.
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but if I take from a living donor and something happens to the donor's kidney
I can not give my kidney back
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as a recpient of a kidney from a non related donor i was so happy and relieved that my friend was a match, yes i had family to test and was a match but wasnt healthy enough to withstand surgery ,its so hard to get your hopes up thinking maybe im gonna get a kidney this time and to find out not, what im saying if someone is willing to give u the gift of life take it ,the donor knows all the pros and cons of donating. the living donor kidney has a longer life than a nonliving donor , you cant look and say what if this or that happens. according to my donor it wasnt a lot of pain for him. maybe this will help in your decision .if you havent seen this video of my donor and i would like for you to watch (hope its ok to do this!!)
www.wsls.com/sls/news/local/southside/article/co_worker_saves_a_life/11768/
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If Kidney/Pancreas is the best medical option, then go for that. If living related donor is a better medical option, then be open to it. Anticipatory guilt is not a great way to go through life.
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Run - you are not wrong (or alone) to feel that way!! Apart from the fact that the way you feel is the way you feel and that can't ever be "wrong" - I know exactly the feeling. I don't have a large family but both my brother and sister tested to donate to me. My brother wasn't even a close match so was ruled out. My sister is a 3/6 match and she continued through the testing process. I have to say that I thought about this a lot when it became a strong possibility that perhaps she could donate to me. When they decided she shouldn't donate due to her blood pressure being a little high I was actually relieved (!)... because I know in my heart that I couldn't bear it if something had happened to her as a result of the surgery and then down the track of her living with one kidney. I would feel responsible if something medical happened to her as the result of that gift (I would worry about that way more than me rejecting the organ, which would be a terrible waste yes, but that would be a negative outcome for me as opposed to her). At least now when I get a transplant off a deceased donor I won't be worrying about the future for them with one kidney (which sounds horrible I know, but I am sure you all understand how I mean that). While I probably would have accepted the gift of donation from my sister if she was allowed to donate (I think she would have killed me otherwise :) ) as I say in a way I am actually relieved that she can't because that was a concern I would have always had had it gone ahead - even though when we discussed it during the psych interview that she was going in well aware of potential issues down the line and she was willing to live with that if it meant hopefully a better quality of life for me.
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My sister is willing, but I haven't given her any info about being tested. Like you, Run, I'm holding out for the pancreas and kidney matching set. I'm also leery of putting my sis thru surgery when she has a small child to raise. My nephew needs his mom a lot more than he needs his auntie! I also know the stats on donors having fatal complications - it's 1 out of 3000. I realize that is a small risk, but it's not that small. (I'd buy lotto tickets if my odds were that good of winning, after all. . .) Plus, she really can't afford to miss work and might even lose her job if she took the time off and then had some minor problem that kept her from recuperating quickly. She can't afford that. Currently, dialysis is working reasonably well for me. I'm not perfectly healthy, but I'm not getting significantly sicker, either. If that happens, I might change my mind and have her start testing.
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Run8,
I do not think you are selfish at all for wanting to hold out for the Kidney-Pancreas. I am in the same boat. My family has offered to be tested but I am not all about putting any of them through the surgery. They all have families, troubles and hardships and I do not want to add any sort of extra trauma. I also think about what if it rejects. I do not like the thought that this might cause guilt. My husband is not a match but he wants to participate in the cross-match program. You know where the organization finds someone else who's donor doesn't match them but matches me and then my donor matches their recipient. But if something does happen to me then I need him to be healthy and strong to raise our daughter.
Point being that there is no right or wrong. Being human we all need to figure out the solution that is fits us. Is right with our needs.
My personal opinion, for myself, is to try to hold out for the double transplant. The Pancreas does not have as long of a a lifespan as the Kidney does but it will help the Kidney last longer. (remember diabetes plays havoc on the organ). Being young, I want to try to make everything work as long as possible before having to go back on dialysis and be listed again.
Good luck with your decision, remember it's your life.
Renee