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Author Topic: Going crazy trying to decide if I should donate my kidney  (Read 1190 times)

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Offline Lovedbythesun

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Going crazy trying to decide if I should donate my kidney
« on: March 27, 2018, 03:07:25 PM »
My Uncle, who is more like a father to me, lost kidney function due to a botched surgery for an aneurism. Nobody else in the family stepped up, even his own children. I offered with no hesitation. I am not scared of surgery and as far as I have ever known, we can get by just fine with one kidney. That was his attitude as well. And then I started doing some research and am starting to have some doubts. It is apparently very common to suffer chronic fatigue due to slight damage to the adrenal gland. The vein to the adrenal gland has to be cut in order to remove the kidney. They also cut 2 abdominal muscles and abdominal hernias are common. Higher b/p is another somewhat common occurence. Also having donated a kidney is considered a pre existing condition to insurance companies. I know one ladie who had to go without insurance for a couple of years until she got hired with a really great company who offered her insurance. Argh! I feel like the translant team advocate and even in some ways my uncle werent fully forthcoming about the risks involved. Add that to the fact that I am only 42 and he is 75. And I have two children under 11 and I would like to see my grandchildren grow up. So you would think my mind would be made up, but no. Even with all of these issues, I still feel incredibly obligated morally to do this. My morals say that if you can save the life of someone you love, you do it! He is very active and healthy at 75. Now he is on dialysis and cant travel. He told me that his Dr told him that dialysis was killing him and I wonder if that is true. I knwo he is terrified to die, I would be scared to die too. Also, he hasn't quit smoking and he just stopped taking his blood pressure medication against medical advice. I hope someone would give me a kidney if I needed it. However, I really dont think I would allow my children to donate to me. I know you all can't tell me what to decide, but I would appreciate any insight on how to consider all of this information. Also should add that I am 8 months sober, and want to continue my sobriety the rest of my life. Not sure if this would be a risk.

Offline elephant

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Re: Going crazy trying to decide if I should donate my kidney
« Reply #1 on: March 28, 2018, 07:27:54 AM »
Dear Loved,

I donated to my Dad when I was 47 and he 75.  We had a lovely 6 years together before he died from bladder cancer.  His kidney function was perfect to the end. 

It can be difficult to reconcile the sense of obligation to donate.  But love often conflicts with our natural desire to protect our self.  In my case the decision was easier - I've never known a person who loved life more than Daddy.  But this choice is not always clear.

During the approval process you would meet with a psychologist and a social worker either of whom can put the brakes on the donation due to unsuitability in the recipient or donor.  You would need to have very earnest discussions with these people. 

If your uncle is not compliant with his blood pressure medication or smoking cessation, the transplant team may consider him an unsuitable candidate.  Absolute compliance with medication is essential after transplant.  The patient must take medication on a complex unvarying schedule for the rest of his life.  Some people can not handle this, especially as they age.  My Dad was fortunate that Mommy controlled his daily meds schedule.

Your addiction will be a lifetime struggle well worth fighting.  You would need to discuss the possibility of relapse due to opiate use for surgical pain with your transplant team.  This is a very real risk that may well make you an unsuitable candidate. 

I'd be even more concerned about these two issues than the possibility of adrenal or blood pressure changes. 

In addition, do you have a support group or individual who can help you work through this?  If you choose not to volunteer for testing you still need to make peace with your sense of familial duty.  Your love is not diminished by realizing that you are not a good donor candidate. 

Love, elephant

Offline willow123

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Re: Going crazy trying to decide if I should donate my kidney
« Reply #2 on: June 07, 2018, 03:31:05 PM »
Dear Lovedbythesun,

I am not a kidney donor myself but I am married to someone who has hereditary kidney disease in his family, although he does not, and no shortage of siblings to donate a kidney to.  We have been grappling with the question of kidney donation for at least 16 years now.  I said "we" but I really mean "I" because he was pretty much going forward with it no matter what.  The only reason they never happened was because of issues with his siblings that made them incompatible in the end.  Several times he went through the whole process--quite time consuming--only to be told at almost the last minute that the cross-match made it a no-go.  I was wild with worry.  We had three very small children.  We both worked but he made more than I did.  He also worked long hours and he would have had to find a new job if he came down with chronic fatigue.  There were also some botched kidney donations in the news a few years ago, which just added to the mix.

Just recently, another sibling needs a kidney and although he isn't compatible with her, he has taken all the steps to do a paired donation chain with her.  But this time it is very different.  Our children are older, our financial situation is more solid.  In fact, I am trying to research how the national registries work to help the process along.  It is the same proposition, except our circumstances have changed and that has made all the difference.

You can still love your uncle and decide that your primary obligation is to your own family and not do the surgery.  (My friend's 75 year old mother got a kidney from an altruistic donor after her four kids wouldn't donate.)  And you can also love your children, decide the risks are minor, and donate to your uncle. And it is also possible to decide one way at one time in your life, and a different way at another.  I wish you the best with whatever you decide to do.


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