Organ Donation and Transplant: What is Your story?

Posted by Rosemary, Volunteer Mentor @rosemarya, Oct 26, 2020

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.

Hi – I just wanted to let everyone know that my book, KIDNEY TO SHARE, co-written with physician and bioethicist Dr. John Lantos, has been published by Cornell University Press. It's available through all online bookstores. The book details my experience donating a kidney at the Mayo Clinic in Rochester on Sept 28, 2018 to a woman I read about in the newspaper. I'd love comments and feedback from the transplant community!

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@marthagershun

Hi – I just wanted to let everyone know that my book, KIDNEY TO SHARE, co-written with physician and bioethicist Dr. John Lantos, has been published by Cornell University Press. It's available through all online bookstores. The book details my experience donating a kidney at the Mayo Clinic in Rochester on Sept 28, 2018 to a woman I read about in the newspaper. I'd love comments and feedback from the transplant community!

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Here's the book!

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@marthagershun

Hi – I just wanted to let everyone know that my book, KIDNEY TO SHARE, co-written with physician and bioethicist Dr. John Lantos, has been published by Cornell University Press. It's available through all online bookstores. The book details my experience donating a kidney at the Mayo Clinic in Rochester on Sept 28, 2018 to a woman I read about in the newspaper. I'd love comments and feedback from the transplant community!

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@marthagershun, thanks for the update on your book and congrats on its publication. That's quite the accomplishment. Your experience as a kidney donor is very welcome on Mayo Clinic Connect.

(Please note: Mayo Clinic Connect Terms of Use (https://connect.mayoclinic.org/terms-of-use/) and Community Guidelines ((https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/) state that commercial posts are not allowed on Connect.)

My interpretation is that your poured your heart and soul into this book and want to share it widely to help people, not for the primary goal of commercial gain. I hope and trust you'll share your experiences here in the online community to help encourage others to donate the gift of life as well.

Martha, can you share a bit more about working with Dr. Lantos? Why was it important to you to include the perspective of a physician and bioethicist? What ethical decisions did you face as you decided to donate?

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@colleenyoung

@marthagershun, thanks for the update on your book and congrats on its publication. That's quite the accomplishment. Your experience as a kidney donor is very welcome on Mayo Clinic Connect.

(Please note: Mayo Clinic Connect Terms of Use (https://connect.mayoclinic.org/terms-of-use/) and Community Guidelines ((https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/) state that commercial posts are not allowed on Connect.)

My interpretation is that your poured your heart and soul into this book and want to share it widely to help people, not for the primary goal of commercial gain. I hope and trust you'll share your experiences here in the online community to help encourage others to donate the gift of life as well.

Martha, can you share a bit more about working with Dr. Lantos? Why was it important to you to include the perspective of a physician and bioethicist? What ethical decisions did you face as you decided to donate?

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Thanks so much for the very thoughtful questions, Colleen. I wrote the book for two reasons: (1) to share how meaningful donating a kidney was and to encourage others to consider this opportunity – whether for a relative, friend, or stranger, and (2) to recommend policy changes that could make it easier for people to donate.

Dr. Lantos was particularly helpful in putting my personal story in the context of the medical, legal, and ethical history of living organ donation. As both a physician and a bioethicist he was able to use my story to show how current practices could be modified to ease the financial and psychosocial burdens on living donors, while maintaining both safety and efficacy. As a Harvard MBA, I wanted to talk about the unique position of living organ donors – we are BOTH patients AND part of the medical supply chain. Transplant Centers need to consider both roles in order to successfully recruit and retain these extraordinarily altruistic volunteers.

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Hi I am a kidney and pancreas transplant recipient, I just got my new organs January 27,2021 I am 43 years old I had diabetes from the time I was fourteen years old, I have suffered all the complications of the disease including kidney failure. I was on the waiting list for 15 months. I was in and out of the hospital because I was sick all the time that my family and some of my friends did not think I would make it to getting a transplant. I got my call from the Jacksonville Mayo Clinic at 620 am on the 27th to say they think they had a match for me, I live with my parents and my father was up so I put my phone on speaker so he could hear what was being said while waking my mother up. I did tell the lady on the phone that I could only come to the hospital if they really thought they had something for me because I live two hours away from them and that day I had to go to dialysis and they sometimes call me o come in early and the lady said that she was very sure they had organs for me and she was so happy for me. I was told to have a bag packed the day I got put on the list which I did not do because I knew I might be on it for a long time so needless to say I ran around trying to figure out what to pack I did make a list of what to pack the day I got put on the list but of course I could not find it. The hard thing for me was the fact that my father could not be with me and my mom due to the pandemic but he was with my mom in the lobby waiting to hear how everything went. And also I could not see him till I got out of the hospital eight days latter. One of my sister gave me a key chain that says the greatest hero I never knew was the organ donor that saved my life. I am very grateful to my donor and his or her family for giving me a wonderful gift that I will never forget them.

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@howanitz39

Hi I am a kidney and pancreas transplant recipient, I just got my new organs January 27,2021 I am 43 years old I had diabetes from the time I was fourteen years old, I have suffered all the complications of the disease including kidney failure. I was on the waiting list for 15 months. I was in and out of the hospital because I was sick all the time that my family and some of my friends did not think I would make it to getting a transplant. I got my call from the Jacksonville Mayo Clinic at 620 am on the 27th to say they think they had a match for me, I live with my parents and my father was up so I put my phone on speaker so he could hear what was being said while waking my mother up. I did tell the lady on the phone that I could only come to the hospital if they really thought they had something for me because I live two hours away from them and that day I had to go to dialysis and they sometimes call me o come in early and the lady said that she was very sure they had organs for me and she was so happy for me. I was told to have a bag packed the day I got put on the list which I did not do because I knew I might be on it for a long time so needless to say I ran around trying to figure out what to pack I did make a list of what to pack the day I got put on the list but of course I could not find it. The hard thing for me was the fact that my father could not be with me and my mom due to the pandemic but he was with my mom in the lobby waiting to hear how everything went. And also I could not see him till I got out of the hospital eight days latter. One of my sister gave me a key chain that says the greatest hero I never knew was the organ donor that saved my life. I am very grateful to my donor and his or her family for giving me a wonderful gift that I will never forget them.

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@howanitz39 Welcome to Mayo Clinic Connect! I am glad you found this forum and discussion thread. You are fairly new on the "I've been transplanted" journey. What changes have you seen in yourself?
Ginger

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My Stories–

In 1983, I was a 20-year-old college student, majoring in Spanish, and my dream was to fly to Spain and spend some time there getting to know the people and the culture of that beautiful country. I was scribbling away in my journal on the red-eye flight when a young woman across the aisle passed me a note, asking if she could borrow some paper from my notebook so that she could write a letter to her boyfriend. I gave her a few sheets of paper, but instead of writing her letter, she and I ended up writing notes to each other all night long while the other passengers slept. By the time we landed the next morning, we had become fast friends and she introduced me to her parents and her aunt, who were all traveling together to visit their foreign exchange student who had lived with them in Minnesota the previous year. After a weird series of events (too long of a story to tell here), we found the student and the next day, the little family from MN and the student went on their merry way. The young woman and I had exchanged names and addresses and vowed to keep in touch, but because this was 1983, there was no internet or social media yet, and very few folks had cell phones, so keeping in touch meant expensive long distance calls (I lived in Illinois, she in MN) or letters via the USPS. We wrote a few times, but ultimately lost touch with each other. My trip to Spain was amazing, and every year since 1983 I have commemorated the anniversary of that trip by writing about it on Facebook. I still have my journals from that trip, so the memories of those two months in Spain have remained very fresh for me. Fast forward to 2018. It was the 35th (!!) anniversary of that long-ago trip, and I was getting ready to post my annual memories essay on Facebook, when it occurred to me: I still remember that young woman's name; I wonder if she is on Facebook, too?? I'll tag her in this post, if she is! Well, I searched, I found her, I sent her a friend request, and we re-established contact with each other and began chatting on the phone regularly. It was during one of our chats that she mentioned that she was dying of a liver disease and had just been placed on the transplant list. I was shocked and blurted out, "Oh, no! So you have to wait for someone to die in order for you to receive a liver??" to which she replied that she was actually a good candidate for a living donor's liver. I did not know, prior to that moment, that a person even *COULD* donate a portion of their liver while they were still using it! I told Kari that I wanted to help, and she put me in touch with the Mayo Clinic Transplant folks. Every single test and evaluation (blood work, psychological interview over the phone, etc etc) was green light, green light, green light, until it finally came time for me to actually physically travel to Mayo and get evaluated in person. I arrived there in January of 2019 for a full week of head-to-toe evaluations, and saw Kari again for the first time in 35 years (our reunion was at the Gift of Life House; much hugging and crying ensued). I passed every test and was deemed a good match, and on February 25, 2019, I underwent surgery to donate 65% of my liver to Kari. She is doing AMAZINGLY well, and I recovered so quickly that I often told people that the whole experience was like Serv-Pro: like it never even happened. I had such a good experience, in fact, that I wanted to donate something else. I knew I could not donate another portion of my liver, but my Mayo team assured me that I could donate a kidney, if I wanted to. I thought, well, that's great, but how do I find someone who needs a kidney?? Well, God orchestrated that! A lady in my hometown did a local news story about how she was in desperate need of a kidney, and I saw her story. I cold-called her the next day, told her about my liver donation experience, and we began this kidney donation journey together last May. Again, I was green-lit the whole way through, and we ultimately had surgery scheduled for January 18, 2021… and then, five days before surgery, we were told that we were NOT good physical matches for each other, after all, and surgery was canceled. We were devastated. Ultimately, we registered together in the Paired Kidney Exchange Program, and after several hiccups, we finally had surgery on April 15, 2021: she received a kidney from someone in CA, and my kidney went to someone in NY. Renee and I are bother recovering well, for which I am extremely grateful; my only sadness is that I have no other spare parts to give away, LOL! (I tried to register to be a bone marrow donor, but since I am older than 55, I was rejected.). Sorry for the long stories, Folks, and thanks for reading! #shareyourspare

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@lwilkey

My Stories–

In 1983, I was a 20-year-old college student, majoring in Spanish, and my dream was to fly to Spain and spend some time there getting to know the people and the culture of that beautiful country. I was scribbling away in my journal on the red-eye flight when a young woman across the aisle passed me a note, asking if she could borrow some paper from my notebook so that she could write a letter to her boyfriend. I gave her a few sheets of paper, but instead of writing her letter, she and I ended up writing notes to each other all night long while the other passengers slept. By the time we landed the next morning, we had become fast friends and she introduced me to her parents and her aunt, who were all traveling together to visit their foreign exchange student who had lived with them in Minnesota the previous year. After a weird series of events (too long of a story to tell here), we found the student and the next day, the little family from MN and the student went on their merry way. The young woman and I had exchanged names and addresses and vowed to keep in touch, but because this was 1983, there was no internet or social media yet, and very few folks had cell phones, so keeping in touch meant expensive long distance calls (I lived in Illinois, she in MN) or letters via the USPS. We wrote a few times, but ultimately lost touch with each other. My trip to Spain was amazing, and every year since 1983 I have commemorated the anniversary of that trip by writing about it on Facebook. I still have my journals from that trip, so the memories of those two months in Spain have remained very fresh for me. Fast forward to 2018. It was the 35th (!!) anniversary of that long-ago trip, and I was getting ready to post my annual memories essay on Facebook, when it occurred to me: I still remember that young woman's name; I wonder if she is on Facebook, too?? I'll tag her in this post, if she is! Well, I searched, I found her, I sent her a friend request, and we re-established contact with each other and began chatting on the phone regularly. It was during one of our chats that she mentioned that she was dying of a liver disease and had just been placed on the transplant list. I was shocked and blurted out, "Oh, no! So you have to wait for someone to die in order for you to receive a liver??" to which she replied that she was actually a good candidate for a living donor's liver. I did not know, prior to that moment, that a person even *COULD* donate a portion of their liver while they were still using it! I told Kari that I wanted to help, and she put me in touch with the Mayo Clinic Transplant folks. Every single test and evaluation (blood work, psychological interview over the phone, etc etc) was green light, green light, green light, until it finally came time for me to actually physically travel to Mayo and get evaluated in person. I arrived there in January of 2019 for a full week of head-to-toe evaluations, and saw Kari again for the first time in 35 years (our reunion was at the Gift of Life House; much hugging and crying ensued). I passed every test and was deemed a good match, and on February 25, 2019, I underwent surgery to donate 65% of my liver to Kari. She is doing AMAZINGLY well, and I recovered so quickly that I often told people that the whole experience was like Serv-Pro: like it never even happened. I had such a good experience, in fact, that I wanted to donate something else. I knew I could not donate another portion of my liver, but my Mayo team assured me that I could donate a kidney, if I wanted to. I thought, well, that's great, but how do I find someone who needs a kidney?? Well, God orchestrated that! A lady in my hometown did a local news story about how she was in desperate need of a kidney, and I saw her story. I cold-called her the next day, told her about my liver donation experience, and we began this kidney donation journey together last May. Again, I was green-lit the whole way through, and we ultimately had surgery scheduled for January 18, 2021… and then, five days before surgery, we were told that we were NOT good physical matches for each other, after all, and surgery was canceled. We were devastated. Ultimately, we registered together in the Paired Kidney Exchange Program, and after several hiccups, we finally had surgery on April 15, 2021: she received a kidney from someone in CA, and my kidney went to someone in NY. Renee and I are bother recovering well, for which I am extremely grateful; my only sadness is that I have no other spare parts to give away, LOL! (I tried to register to be a bone marrow donor, but since I am older than 55, I was rejected.). Sorry for the long stories, Folks, and thanks for reading! #shareyourspare

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Beautiful friendship and beautiful story! Congratulations to both of you!

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@lwilkey

My Stories–

In 1983, I was a 20-year-old college student, majoring in Spanish, and my dream was to fly to Spain and spend some time there getting to know the people and the culture of that beautiful country. I was scribbling away in my journal on the red-eye flight when a young woman across the aisle passed me a note, asking if she could borrow some paper from my notebook so that she could write a letter to her boyfriend. I gave her a few sheets of paper, but instead of writing her letter, she and I ended up writing notes to each other all night long while the other passengers slept. By the time we landed the next morning, we had become fast friends and she introduced me to her parents and her aunt, who were all traveling together to visit their foreign exchange student who had lived with them in Minnesota the previous year. After a weird series of events (too long of a story to tell here), we found the student and the next day, the little family from MN and the student went on their merry way. The young woman and I had exchanged names and addresses and vowed to keep in touch, but because this was 1983, there was no internet or social media yet, and very few folks had cell phones, so keeping in touch meant expensive long distance calls (I lived in Illinois, she in MN) or letters via the USPS. We wrote a few times, but ultimately lost touch with each other. My trip to Spain was amazing, and every year since 1983 I have commemorated the anniversary of that trip by writing about it on Facebook. I still have my journals from that trip, so the memories of those two months in Spain have remained very fresh for me. Fast forward to 2018. It was the 35th (!!) anniversary of that long-ago trip, and I was getting ready to post my annual memories essay on Facebook, when it occurred to me: I still remember that young woman's name; I wonder if she is on Facebook, too?? I'll tag her in this post, if she is! Well, I searched, I found her, I sent her a friend request, and we re-established contact with each other and began chatting on the phone regularly. It was during one of our chats that she mentioned that she was dying of a liver disease and had just been placed on the transplant list. I was shocked and blurted out, "Oh, no! So you have to wait for someone to die in order for you to receive a liver??" to which she replied that she was actually a good candidate for a living donor's liver. I did not know, prior to that moment, that a person even *COULD* donate a portion of their liver while they were still using it! I told Kari that I wanted to help, and she put me in touch with the Mayo Clinic Transplant folks. Every single test and evaluation (blood work, psychological interview over the phone, etc etc) was green light, green light, green light, until it finally came time for me to actually physically travel to Mayo and get evaluated in person. I arrived there in January of 2019 for a full week of head-to-toe evaluations, and saw Kari again for the first time in 35 years (our reunion was at the Gift of Life House; much hugging and crying ensued). I passed every test and was deemed a good match, and on February 25, 2019, I underwent surgery to donate 65% of my liver to Kari. She is doing AMAZINGLY well, and I recovered so quickly that I often told people that the whole experience was like Serv-Pro: like it never even happened. I had such a good experience, in fact, that I wanted to donate something else. I knew I could not donate another portion of my liver, but my Mayo team assured me that I could donate a kidney, if I wanted to. I thought, well, that's great, but how do I find someone who needs a kidney?? Well, God orchestrated that! A lady in my hometown did a local news story about how she was in desperate need of a kidney, and I saw her story. I cold-called her the next day, told her about my liver donation experience, and we began this kidney donation journey together last May. Again, I was green-lit the whole way through, and we ultimately had surgery scheduled for January 18, 2021… and then, five days before surgery, we were told that we were NOT good physical matches for each other, after all, and surgery was canceled. We were devastated. Ultimately, we registered together in the Paired Kidney Exchange Program, and after several hiccups, we finally had surgery on April 15, 2021: she received a kidney from someone in CA, and my kidney went to someone in NY. Renee and I are bother recovering well, for which I am extremely grateful; my only sadness is that I have no other spare parts to give away, LOL! (I tried to register to be a bone marrow donor, but since I am older than 55, I was rejected.). Sorry for the long stories, Folks, and thanks for reading! #shareyourspare

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Very touching and remarkable! Thank you for sharing.

REPLY
@lwilkey

My Stories–

In 1983, I was a 20-year-old college student, majoring in Spanish, and my dream was to fly to Spain and spend some time there getting to know the people and the culture of that beautiful country. I was scribbling away in my journal on the red-eye flight when a young woman across the aisle passed me a note, asking if she could borrow some paper from my notebook so that she could write a letter to her boyfriend. I gave her a few sheets of paper, but instead of writing her letter, she and I ended up writing notes to each other all night long while the other passengers slept. By the time we landed the next morning, we had become fast friends and she introduced me to her parents and her aunt, who were all traveling together to visit their foreign exchange student who had lived with them in Minnesota the previous year. After a weird series of events (too long of a story to tell here), we found the student and the next day, the little family from MN and the student went on their merry way. The young woman and I had exchanged names and addresses and vowed to keep in touch, but because this was 1983, there was no internet or social media yet, and very few folks had cell phones, so keeping in touch meant expensive long distance calls (I lived in Illinois, she in MN) or letters via the USPS. We wrote a few times, but ultimately lost touch with each other. My trip to Spain was amazing, and every year since 1983 I have commemorated the anniversary of that trip by writing about it on Facebook. I still have my journals from that trip, so the memories of those two months in Spain have remained very fresh for me. Fast forward to 2018. It was the 35th (!!) anniversary of that long-ago trip, and I was getting ready to post my annual memories essay on Facebook, when it occurred to me: I still remember that young woman's name; I wonder if she is on Facebook, too?? I'll tag her in this post, if she is! Well, I searched, I found her, I sent her a friend request, and we re-established contact with each other and began chatting on the phone regularly. It was during one of our chats that she mentioned that she was dying of a liver disease and had just been placed on the transplant list. I was shocked and blurted out, "Oh, no! So you have to wait for someone to die in order for you to receive a liver??" to which she replied that she was actually a good candidate for a living donor's liver. I did not know, prior to that moment, that a person even *COULD* donate a portion of their liver while they were still using it! I told Kari that I wanted to help, and she put me in touch with the Mayo Clinic Transplant folks. Every single test and evaluation (blood work, psychological interview over the phone, etc etc) was green light, green light, green light, until it finally came time for me to actually physically travel to Mayo and get evaluated in person. I arrived there in January of 2019 for a full week of head-to-toe evaluations, and saw Kari again for the first time in 35 years (our reunion was at the Gift of Life House; much hugging and crying ensued). I passed every test and was deemed a good match, and on February 25, 2019, I underwent surgery to donate 65% of my liver to Kari. She is doing AMAZINGLY well, and I recovered so quickly that I often told people that the whole experience was like Serv-Pro: like it never even happened. I had such a good experience, in fact, that I wanted to donate something else. I knew I could not donate another portion of my liver, but my Mayo team assured me that I could donate a kidney, if I wanted to. I thought, well, that's great, but how do I find someone who needs a kidney?? Well, God orchestrated that! A lady in my hometown did a local news story about how she was in desperate need of a kidney, and I saw her story. I cold-called her the next day, told her about my liver donation experience, and we began this kidney donation journey together last May. Again, I was green-lit the whole way through, and we ultimately had surgery scheduled for January 18, 2021… and then, five days before surgery, we were told that we were NOT good physical matches for each other, after all, and surgery was canceled. We were devastated. Ultimately, we registered together in the Paired Kidney Exchange Program, and after several hiccups, we finally had surgery on April 15, 2021: she received a kidney from someone in CA, and my kidney went to someone in NY. Renee and I are bother recovering well, for which I am extremely grateful; my only sadness is that I have no other spare parts to give away, LOL! (I tried to register to be a bone marrow donor, but since I am older than 55, I was rejected.). Sorry for the long stories, Folks, and thanks for reading! #shareyourspare

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@lwilkey What an awesome story thank you for sharing. I believe that there is no such thing as coincidence. I believe a much higher authority had His Hand in that whole story. God Bless you for being there for those 2 individuals.
Have a Blessed Day
Dana

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