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Kidney transplant - The Journey from the Donor's Side

Transplants | Last Active: Apr 29, 2020 | Replies (357)

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@marvinjsturing

@contentandwell I am not on dialysis at this time, however, the reason I am on the inactive list is because when you have had pancreatic cancer, you have to be cancer free for 5 years before you can have a transplant. At one time, someone told me that the "cancer free date" was based on when I had my last chemo. That would have made my anniversary date December of 2019. Last month, when I went to Rochester for my semi-annual checkup, Oncology told me that the "cancer free date" is based on when I had my surgery. My surgery was done in June of 2014 so June of this year will be my 5 year anniversary. A couple of weeks ago, I wrote 2 letters about looking for a kidney donor. It was always hard for me to ask for help when I was healthy. In the last few years, I have learned to ask for help and accept help when it is offered. But it stills feels very strange asking people for a kidney. Maybe it is time to get those letters out again and review them one more time. I wasn't sure if Facebook was an appropriate way to get the message out, but I see in one of your previous posts that others are using it to inform people of their need. (When I went in for my evaluation, I was told that the wait for a deceased donor was 2 to 7 years.)

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Replies to "@contentandwell I am not on dialysis at this time, however, the reason I am on the..."

@marvinjsturing People put requests on Facebook. I've seen stories of people running races with shirts on or putting up billboards saying someone they knew needing a donor. When people at our church found out my husband needed a donor we head people from there asking and I had a cousin and a friend from high school offer.
Get it out there and a living donor may be found.
Blessings,
JoDee

@marvinjsturing You may as well put it out there, it can't hurt and it certainly could help. I understand completely feeling awkward about asking, I would too, but it is your life. People seem to ask in all different ways, and many are successful.

Congratulations on being cancer free after battling pancreatic cancer. What stage were you at when the cancer was diagnosed? I just had a dear friend diagnosed with it last Wednesday and I am so concerned for him. When I spoke to his wife they didn't know the stage yet.
JK

@marvinjsturing Congratuations on being cancer free! Definitely, go ahead and start putting feelers out. Do you know your GFR at this point? Going for a living donor is less stressful on your system. It takes time to get through the testing process as a donor. Here are some thoughts for getting the word out. Do you belong to a faith community, if so let people there know. Make a t-shirt with your needs on front and back, then wear it and have your friends/family do the same. Make a bumper sticker for your vehicle, and put it on! You never know who will see it! Is there a columnist from your local paper you can contact to tell your story? Sometimes you have to be creative. While you may feel reluctant to be so exposed, it sounds like you know there is something even bigger in store for you.
Ginger

@marvinjsturing I found the person I donated to on Twitter. I'm not proficient at it, don't have a lot of followers and wasn't even following the person who posted seeking a kidney for her Mom. We don't live near each other, I thought I may have been too old & fat to donate, I don't have much money in savings and I'm self employed so I don't get paid if I don't work. We aren't the same race so I didn't know if that made a difference in matching for donation. It was a perfect set up for me to just retweet so the "real" donor may see it and be on my way.
Here is what helped make it easier for me- She said in her post what blood type they were looking for. She provided a link to the Mayo breeze site so I could just click on it to find out more information and to do the initial evaluation. She said that insurance would cover all of my medical bills & some of the travel costs and that there are organizations to help cover my missing wages.She said that her whole family would do every thing they could to make sure I was comfortable throughout the whole process.
It gave me just enough information to feel safe in inquiring without feeling over loaded with information. We DM'ed a bit after I filled out the questionnaire & I learned more about her Mom and why she needed a kidney. The nurse/social worker from Mayo called and told me what my part would be and it went from there.
Social media was easy for both sides of donation because it was far reaching and nobody was put on the spot. There was immediate information available and I didn't have to worry about not having the best social skills. Family, friends, coworkers, acquaintances and strangers all passed the information along and somehow it got to me at that exact right time where I thought, I can do that.
Good luck in your journey and remember there that are so many of us that can help. Even if we are only passing information on to one other person, that may end up to be the donor.