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Organ Donation and Transplant: What is Your story?
Every transplant patient has a unique story to tell. Let's create this place to share our stories. By sharing, we can meet others like us, we can encourage people who are at the beginning of their journey, and we can support those who are on the waiting list.
Here are some questions for you to consider as you write your story:
– Focus on yourself and how you felt, what you did, who helped you.
– How did you find out that you would need an organ transplant?
– What was the waiting and recovery like for you?
– How has your life changed since your transplant?
Organ donation and transplant is a very personal. To respect the privacy of all be sure to have permission before sharing identifying details about others involved in your story, for example
– your donor/recipient (age, circumstances of death, etc)
– your caregiver or family members (say "my husband", rather than using a full name)
What is your transplant story?
Note: If you want to ask a question for another member who has posted their transplant story here in this discussion, be sure to add their @membername in your post, for example @rosemarya. Your question may already be discussed in other transplant discussions. Be sure to check here first: https://connect.mayoclinic.org/group/transplants/ That way this discussion can be reserved for member transplant stories and hopefully make it easier to read and find similar symptoms to your own.
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@gingerw
Hi, Ginger. I absolutely understand why your husband named his kidney Kermit, based on the meaning of that name. I was never on dialysis but based on what I know about it from people who are on it, the name Kermit perfectly describes your husband after over 5 years on it. I rejoice with him (and with you) that he's now literally a "free man." I can only imagine the depth of his joy. Congrats on his recent 8 year transplantversary! 👍😊
Tif
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2 Reactions@scottij
Oh, Scott, I am so glad that you found out about your donor and have been able to rename your new heart James. I read how you had so very much wanted to find out his name and identify with him. Congrats!
I can see that James has been good to you: 32,000 steps a day...weekly basketball games. Wow! That's fantastic! And I love how you thank James.
I think it's great that you organized the "ancient athletes league." The name makes me think of a slow pitch softball team here called the Huff-N-Puffers for men ages 60 and over. I'll bet James has you in better shape than those guys! 😊
Thanks for pointing out that we now carry two sets of DNA in our bodies. I never thought of that.
Scott, you are a wise man. I could listen to till the cows come home. 😊
I know you were writing your book. I read the excerpt that you shared when you posted your story. Have you completed the book, or are you still working on it? I would love to read it.
Take care.
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2 ReactionsGood morning Scott. Your commentary continues to amaze me. You so clearly articulate what I think so many of us transplant patients understand - but can’t quite put into words. For me, the sudden onset of liver failure changed my life in immeasurable ways. One of the most difficult challenges for me was the loss of control over my life. I think most of us truly believe that we are in control of our destinies - until the universe steps in - and proves to us that we are really not in control. We have to learn to play the cards we are dealt - and adjust our expectations and our lives accordingly. I was close to death several times in my journey, waited nearly 2 years for transplant, received 7 calls for possible transplant - but by the grace of God, finally received a new liver that saved my life in Feb 2022. My donor is known as my Angel around my home. I don’t know anything about them, but thank them and their family every day for the ultimate gift that allowed me to reclaim my life. Quite honestly, I never would have believed that I would ever have been able to resume an active life. I expected to be an invalid - a sickly old man of 62 for the rest of my days. But yet here I am - life resumed to the fullest. The human body is an amazing machine. I exercise every day, play pickleball and even was able to get a new job - after being “retired” from my longtime career - due to my extended disability. Finding a new job was part of me trying to seize back control of my life - and I have succeeded at that. But I now truly understand that control of our lives is ephemeral. Can’t wait to read your book!
Gerry P
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3 ReactionsThank you for the kind words. The book went on hiatus for quite some time as it started to feel self-centered and that is something I try to avoid though I am not always good at accomplishing that goal. However, I am back writing and would say it is about 50% done with another 25% scattered throughout notes and musings. My motivation to start again came from sharing pieces with a dear friend who kept asking for more. She also helped me in adjusting some content away from self-reference. For example, there is a chapter/section on music in my recovery. I had previously ended with my play list. She suggested I end with a challenge for the reader to develop their play list.
Good luck with your angel. Each of us have differing challenges based on our specific transplanted organ. I understand "you liver people" have issues with itching. I hope that does not trouble you too much.
As for control, I have come to learn that the only thing I do control is my mind. I choose what to think no matter what crosses my path. It is a constant struggle but one worth the effort.
Finally I am glad you are using your body and not acting as a sickly old man. It is fun to move and use this wonderful tool, right? I remember during my evaluation to make "the list" the psychiatrist asked me what I want from a transplant. I told her I wanted to live and not simply exist.
Live long and prosper.
Best always,
s!
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3 ReactionsGerry, as you wait for @scottij's book, you might appreciate reading his member spotlight:
- Every day is a good day: Meet @scottij https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/every-day-is-a-good-day-meet-scottij/
If you put "transplant" into the search bar of the "About Connect" blog https://connect.mayoclinic.org/blog/about-connect/, you'll find a number of spotlights on the transplant members interviewed by @rosemarya. 🙂
Are you interested in being interviewed?
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1 ReactionHi Colleen. Yes I’ve read @scottj’s spotlight and all of the other posts on transplant members experiences. I believe I also shared my story on that blog as well. Scott just has a way of putting things into words that seems to resonate with me. I always enjoy reading his posts, and his gratitude is so very apparent. Each of us has our own story - but many of the emotions & concerns are universal. GerryP
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2 Reactions@jerryp - Jerry, Here is link to your article:
- Liver transplant patient becomes volunteer for department that saved his life
https://newsnetwork.mayoclinic.org/discussion/liver-transplant-patient-becomes-volunteer-for-department-that-saved-his-life/
Here it is in the Mayo Connect transplant Blog:
- Patient Turned Volunteer and Advocate: @gerryp Tells his Story
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/patient-turned-volunteer-and-advocate-gerryp-tells-his-story/
Thank you for sharing and spreading hope as you volunteer with the patients during their time in Jacksonville.
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2 ReactionsHello,
I am curious if anyone experienced a bad situation with their donor right after a kidney transplant? I had a very successful pancreas transplant 22 plus years ago. It was the hardest physically and lots of unwonted symptoms for the first year but ultimately was the best thing that ever happened for me.
However, when I needed a kidney 13 yrs later, my big sister donated her kidney. It was the easiest surgery I ever had but mentally and emotionally it was the the hardest surprise I never saw coming , when I saw and heard every day that it was for all the wrong reasons and now I am trying hard not to resent my organ and accept my siblings where not who I thought they were my whole life.
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2 Reactions@22shannon I am so sorry for the unfortunate "drama" you've endured since your kidney transplant. While you have a right to be disappointed with your sister's actions, please do not resent the kidney. Despite the mental and emotional stress your sister has caused you, the kidney was still a blessing for you, improving the quality of your life. Do all you can to keep
it functioning well. People are who they are, and we cannot control how they treat us. So, I agree with you: accept your sister for who she is...move on...and enjoy your life! I pray that God will free you from the emotional and mental stress, and will give you peace of mind. Take good care of yourself.
🙏💕
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3 ReactionsThank you , I am super grateful for this blessing, just shockingly came hand in hand with " drama" / heartbreak. I need to not let the games/ opposite of support get in my way of taking top care of my health.
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