Kidney
Living kidney donor
May 3, 2023
in Kidney
We just found out my husband is going to require a kidney transplant soon. We of course have been told that a living kidney donor is best. Now my question is have any of you received a living kidney and how did or does one ask for a donor. We don’t know where to begin. My liver transplant happened so quickly because I was so sick but boy that waiting list for a kidney is very long. We were told 8 years at least. Can anyone advise us ?? We had one dear friend offer hers but her doctor said she’s not a candidate.
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Transplant Patient
this is a tough one! I’m sorry to hear about your husband - that’s rough! Both of you needing transplants is such a unique situation.
when we thought I would need a living liver donor, I had no shame in asking everyone. I usually made a joke as a conversation starter about what’s your blood type because I need a liver. It was light hearted enough that I could slide it into normal conversation but it did lead to some real discussions on transplantation and donation. I posted it on social media, and a bunch of family and close friends got tested just because they knew I needed a transplant.
maybe his hospital has some ideas of where you can start?
Transplant Patient
@Deb - so sorry tonhearvabout your husband's situation. Btw, congratulations on receiving your Gift of Life.
Indeed, kidney transplants through a Living Donor is usually the better option, in terms of matching, condition and therefore a better outcome (longevity).
The first thing is to stay positive and keep hope alive, and begin the search for a living donor ASAP. You could begin by sharing your husband's story among friends and relatives (even though, the 'ask' is not easy). You may be surprised at the response. Most people are kind and are open to 'helping' others in need. Share the story (and the plea for a kidney) freely and everywhere! It could be at Churches, family gatherings, public places, neighborhood stores/cafes. Once you have a story that can be shared publicly, put on paper (perhaps create a 'flyer' with a catchy photo).
Simultaneously, it's important to educate yourselves about the entire process (Living Donation + Transplantation). Once you know the transplant center you will be using, their website should have a whole lot of educational resources (for you & to share to others who may be interested in becoming a donor). Your husband will be assigned a transplant coordinator & the hospital will likely have a living donor coordinator who will help screen & guide potential donors.
It's definately a journey & it's not simple to find a suitable donor - but it's 💯 possible and certainly better than having to wait years and years (that too on dialysis etc).
Please do reach out if you have other questions, I could provide you with some good resources too.
Best of luck!
Thank you both so very much. Your encouraging words mean the world to us. We are preparing to share our story soon. He’s been accepted at a transplant hospital so our adventure begins. Sdney0522 I will definitely be doing more research thanks you!!
I have seen people with their info on car magnets about needing a kidney.
@Deb I was lucky 🍀 to have my name go to the top of the list, but not lucky for the reason why. I am 99% sensitized, so I’m a really difficult match. Before I realized this, though, I began posting on social media about how I needed a transplant and I was starting to look for donors. I had some people get tested that way, but they were not a match to move forward. I think the biggest thing is advocating and letting people know that you are looking for a kidney.
We are having a webinar on May 24th where we’ll be talking to a donor/recipient pair who were strangers and met through social media for Jill to get her new kidney. Maybe watching their story will help inspire you to know how to move forward looking for a living donor.
You can sign up here: https://transplantlyfe.com/webinars
I posted all to social media in the beginning to find my living donor! I know it's such a weird thing to ask, but I found that being just real and open about what you are going through and instead of "asking" you are really just sharing the story! Getting your story and link out there on social media is so important and you never know who just might see that post that might feel inclined to help! My friend from twitter's cousin ended up being my Living Donor. If it wasn't for me sharing my story on my Twitter, I would've never been connected to her. I feel so lucky and blessed to have met her and I encourage everyone to not feel scared or ashamed to post on social media websites.