Organ Donation and Transplant: What is Your story?

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!

@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?

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.

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

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

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

As I am in the process of writing a book on my experience I am finding it impossible to put a few short paragraphs down to share with others. The book is based on a poem that I have always liked:

Behind you are all your memories
In front of you are all your dreams
Around you are all who love you
Inside of you is all you need

I intend to cover how I got to emergency valve surgery despite a life of apparent health and the subsequent life-saving heart transplant nine months later. Followed by a second section on what I intend to do with the additional years granted to me. The third part will focus on all of those whom I have to thank for being here and lastly, what is inside of me and creates my drive.

I have titled the book "All Days Are Good Days; Some Days Are Just Better Than Others" Here is a excerpt
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As usual we went to dinner that night and Vicki asked if I was okay as I seemed listless. I said I was having a hard time catching my breath. We thought it might be a cold or even valley fever, a fungus infection prevalent in the Southwest where we were new residents. We skipped dessert and came home. I went to bed early as I was rising at 3:30 AM to catch a 5:30 AM flight to New York where I was having dinner with a client and then conducting a transition lab for said client over the next two days.

Within a half an hour of shutting the bedroom door Vicki came in and said she could hear me trying to breathe and wanted me to go to the emergency room. I reluctantly called the closest ER and they said I probably should come in but that if I had to be admitted they could not admit me due to limited bed space in the hospital. In typical male fashion I thanked them, hung up, and ranted for a few minutes. I told Vicki that I was fine and would likely sleep on the plane (God, I miss first class travel). She begged me to reconsider as she heard about a new ER that had recently opened. “Let’s just go and be sure you are okay.” We made the 15-minute drive and walked in.

It certainly was a new ER and thoroughly unknown to anyone else as the only people in the facility were staff who were all standing around drinking coffee. Apparently, I said the magic words, “shortness of breath,” and they immediately set me up in a room. I was poked, prodded, x-rayed, and scanned. Nurses were in and out and I was the center of attention in the way you do not want to be the center of attention. After a few minutes I asked the doctor when I would be released as I needed to catch that flight to New York in a few hours. He looked at me quizzically and said, “You are not going anywhere. You are on the verge of a major cardiac event. We are trying to admit you to an available hospital. My guess is you have congestive heart failure.” And then he walked out.

“What the hell?” And then both Vicki and I were googling Congestive Heart Failure. He had to be wrong. I had none of the markers. My blood pressure was low. Sodium was good. Cholesterol was good, no, great. I exercised like a demon. I had no water retention (that I could see). I was not obese. I was not diabetic. I did not smoke. I did not do drugs. I had no family history. It had to be something else. It had to be. But it was not. It was time to live one of my rules: Face reality as it is and not as you want it to be.
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Best always,
s!
Scott Jensen