Living Donor, maybe?

Posted by tinap @tinap, Oct 24, 2019

I'm seriously considering being a living donor. I currently do not know of anyone who needs my kidney; therefore I would be considered a non-directed donor. I've had discussions with friends and family and they can't understand why I would do this. "What if I needed the other? – I was born with a spare." To me, that is not a reason to not donate. I don't expect to need the spare. I will likely pass away with two beautifully functioning kidneys. In my mind, why wouldn't I help someone today instead of waiting until I'm dead (and then they may not be of use). The other reason I've heard, 'Is what if my adult son may need it". Another friend has stated, "What if you develop complications and die". I'm in a perfect place in my life where I no longer financially support anyone but myself.
Am I crazy? Who else out there has been a non-directed donor? Did you family understand and support your decision?

I'm so glad that you are considering donation!
I wasn't technically non directed because I had a named recipient but I didn't know her or her family (her daughter had a Twitter post about her mom needing a kidney).
My husband & grown children were initially worried but encouraged me every step of the way. My husband said it was similar to what I do in my daily life but on a bigger scale.
My extended family brought up a lot of the points you mentioned. I donated at Rochester Mayo and don't know if its the same everywhere or for every person but here's what I learned.
You will have 1000000 tests to make sure that you will not only do very well living with one kidney but are able to successfully go through surgery. If you donate and need a kidney at some point, you will go to the top of the list. If for some horrible reason your son needs a kidney, you will know exactly what the procedure is and will be better able to explain the process to a potential donor. Also in regards to your son, you've probably been teaching him his whole life to help and encourage others. Isn't this another way of showing him what humans are capable of doing?
If people continue to call you crazy you can let them know that there is a psychological evaluation done during testing and all is well!
I found the whole process gave me more back than I gave up and would do it again if possible.
The best of luck to you!

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That is such a remarkable thing to do. My husband is going through the process now to get on the list to get a transplant. It's a tough process and dialysis gets a bit tougher each day as his health fails. His sons are his only living relatives and don't qualify to donate, so now we wait. Our prayers that everyone who needs a transplant will get one.
Thank for wanting to help others.

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Hi @tinap welcome to Connect. I admire people tremendously who want to help out a person they don’t even know by donating an organ. I do think my family would be alarmed and try to convince me not to, simply because they would be worried about me.

When I learned that I would need a liver transplant my daughter was very insistent that she wanted to be my donor. I said no for a long time but she kept insisting so I finally decided to say yes. Then it turned out that she could not. Even though it was for me, I was worried that there could be a problem for her. My transplant journey started in 2015 (I was transplanted in September 2016). Since the beginning of my journey I believe there is much less concern about the potential problems for donors so I would not be so reluctant now.
If this is something you really want to do then do some research so your family can be reassured that it is not that risky, but does take some recuperation time. I think that’s less for kidney than for liver.

@beachpatti my niece’s husband had dialysis for about 5 years and finally had his transplant in August. He has 10 or 11 brothers but none qualified, mostly because of age I think.
I hope your husband does not have to wait that long but no matter the wait, it will happen.
JK

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@tinap, Yesterday, as I was driving thru Wisconsin, I saw a billboard with this message, "Organ Donors are the real MVP's".

I received my life, my organ donation, in 2009 from an anonymous deceased donor. I would like to support you by some information that I have gathered to share with you –
Mayo Clinic Transplant Department has put together a Recipient Toolkit and a Living Donor Toolkit where you read and view some expert videos relating to the recipient and living donor. https://connect.mayoclinic.org/page/transplant/

Here are some articles by Mayo transplant staff from the newsfeed blog –
https://connect.mayoclinic.org/page/transplant/newsfeed-post/kidney-paired-donation-and-the-mayo-clinic-experience-an-update/
https://connect.mayoclinic.org/page/transplant/newsfeed-post/nondirect-donor-qa-with-kay-kosberg-r-n-c-c-t-c/
https://connect.mayoclinic.org/page/transplant/newsfeed-post/what-to-expect-during-a-living-donor-evaluation/
Here are a couple of discussion about living donation.
-Kidney transplant – The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
-Waiting for an altruistic donor
https://connect.mayoclinic.org/discussion/waiting-for-an-altruistic-donor/

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@beachpatti

That is such a remarkable thing to do. My husband is going through the process now to get on the list to get a transplant. It's a tough process and dialysis gets a bit tougher each day as his health fails. His sons are his only living relatives and don't qualify to donate, so now we wait. Our prayers that everyone who needs a transplant will get one.
Thank for wanting to help others.

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@beachpatti, I wish I could drop by in to accompany you during this difficult time. I am a liver/kidney recipient due to liver failure and acute kidney failure. I was on dialysis for a short period of time until I received my own transplant from a deceased anonymous donor. And I understand how you, your husband and your entire family are feeling right now. I am available and willing to hold your hand virtually, talk to you, locate information etc. Please don't hesitate to ask me anything, and I will either answer from my experience,or try to connect you with another member who might have experienced a similar issue.

I would like to share some discussion groups that you might want to review. Remember this:- I invite you to join in any discussion.. If you click on the link, you will be taken directly to the discussion. I am happy to meet you there.
-Finding a Living Donor
https://connect.mayoclinic.org/page/transplant/newsfeed-post/finding-a-living-donor/
-Waiting for a kidney transplant
https://connect.mayoclinic.org/discussion/waiting-for-a-kidney-transplant/?pg=2
-Pre -Transplant Diet and Exercise Ideas
https://connect.mayoclinic.org/discussion/pre-transplant-diet-and-exercise-ideas/
I also want to introduce you to the Mayo Clinic Transplant Pages where the transplant staff regularly posts updates in the Newsfeed Section about many transplant related issues. You might have already seen that I have provided some links in a previous post.

-Staying Positive While Waiting for a Transplant is one that I wrote.
https://connect.mayoclinic.org/page/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/
-Pages > Transplant > Newsfeed contains many topics about transplantation.
https://connect.mayoclinic.org/page/transplant/
@beachpatti, Do you have any questions as your husband undergoes his evaluation? I know that as his caregiver, this is equally difficult for you. How are you holding up?

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Hi Tinap,
I am actively speaking a living donor for a kidney. It is difficult to f
Discuss this here so if you would like to, please private message me. We could discuss further. I am in Tucson, retired from the Air Force, on dialysis and on the Mayo kidney list. Bob

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@tinap Your generosity is a wonderful example to your family and friends, as you start a journey to see if you are able to donate a kidney. Not all who have this desire end up being qualified to do so. After you donate, if something was to happen to you where you need a kidney, you are placed at the top of the list. My friend had this happen 15 years after he donated a kidney to his sister. He got a call, thinking it was the dialysis unit to schedule him for consultation, but it was the transplant team with a kidney for him! This was 7 years ago now. Like you, I want to donate all the organs I can to anyone who needs them, as a deceased donor. Did you know that one human deceased donor can help up to 85 people? That's amazing! @rosemarya gave some valuable links to look at and consider, and I hope you do that. We are here for you, and applaud your generosity!
Ginger

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Thank you all. I talked to my son yesterday. His the only opinion that really matters to me. I have his support 100%. He knows that I donate blood routinely (every 56 days), because it's an easy way to save a life. He knows me and stated, "There isn't I can say to change your mind if you want to do it. But I love you and support this gift". Best thing he could have said. And course, as mauraacro @mauraacro, stated I will have 1000000 test done to assure I am healthy enough to continue. If I pass the Psych test – then I'm not crazy. I've been tested. (side note – Sheldon on Big Bang Theory States that).
I'm going forward. Lets pray I will be able to give something to another person who needs it. I'll check out the link regarding diet. I want to ensure that I give a nice healthy kidney – one of which has filter plenty of water and less diet coke. Wish me Luck.
Thank you Mayo Connect – this is a wonderful forum to discuss my feelings with others… Love you XXXXX

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@tucsonguy

Hi Tinap,
I am actively speaking a living donor for a kidney. It is difficult to f
Discuss this here so if you would like to, please private message me. We could discuss further. I am in Tucson, retired from the Air Force, on dialysis and on the Mayo kidney list. Bob

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Hi @tusconguy, You'll notice that I removed your personal email from your message above. We adivse that you use the private message function to share personal contact information to avoid getting unwanted spam from potential bots and trolls.

Here is more information about paired, directed, non-directed and altruistic donation.
– Kidney Paired Donation https://connect.mayoclinic.org/page/transplant/newsfeed-post/kidney-paired-donation-and-the-mayo-clinic-experience-an-update/

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