Organ Donation and Transplant: What is Your story?

My Story-
My transplant story started when my primary care physician noticed abnormal results on a routine blood test. He referred me to a gastroenterologist and I was diagnosed with Primary Sclerosing Cholangitis (PSC). For nearly 8 years, I was asymptomatic and under his care.

During the summer of 2008, I began to notice fatigue, itching, and nausea that I credited to a recent vacation and hiking. As soon as the jaundice appeared, I knew that I was wrong! A week later, I had an appointment at the Liver Transplant Clinic. The surgeon said that my disease was progressing and that I would need a liver transplant in the near future.

I was evaluated and placed on the UNOS liver transplant list in November of 2008. My condition deteriorated and my symptoms got worse. The fatigue was overwhelming, and the ascites made walking difficult. I only left the house if I had a doctor’s appointment.
In January 2009, I got news that I might have cholangiocarcinoma and was inactivated from the transplant list until a biopsy could confirm otherwise. Due to biliary blockage, the attempts at biopsy were not successful. My transplant team made arrangements for me to be seen at the Mayo Clinic in Rochester.

My appointment was to be in 5 weeks, but I missed it. Acute kidney failure put me in ICU and on emergency dialysis. My condition stabilized and after 5 days, I was flown from ICU in Kentucky to Mayo in Minnesota, a distance of nearly 800 miles.

I spent 2 weeks in the hospital with inpatient dialysis and other interventions. Biopsy results were negative for cancer and I was re-evaluated and reactivated on the UNOS list - for a simultaneous liver and kidney transplant. I requested to stay at Mayo for my transplant.

My husband was at my side the entire time and for 13 weeks our home was at the Gift of Life Transplant House where we met other transplant patients. We discovered that we were not going to be alone, even though our family and friends were many miles away.

The days and weeks leading up to my transplant were long and exhausting. Time seemed to slow down, as day after day I struggled to regain some strength and weight so I would be strong enough for surgery. The jaundice, the nausea, the fatigue, the ascites, the inability to sleep, the procedures, and the dialysis were my normal.

I got the Call from my transplant surgeon early one April morning in 2009. We rode the patient shuttle to the hospital. I remember getting cheers and high fives from the nursing staff as my husband pushed my wheelchair down the hallway! The morning was busy, as I had a short dialysis treatment, and was visited by surgeon, anesthesiologist, chaplain, several doctors, and even our 2 sons who were in town to visit us that week.

My surgery was successful. My new organs began to function immediately. My days of recovery went well, and every day, I was stronger than the day before. It was a joyful time for me and my family.

After 3 weeks, I returned home. Gradually my strength and my endurance continued to improve. Since my transplant, I am once again able to go hiking with my husband, I have resumed playing my violin on Sundays at my church, and have also started a prayer shawl ministry there. I have also joined Mayo Clinic Connect where I volunteer as a Mentor.

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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
---
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.
-----
Best always,
s!
Scott Jensen

Jump to this post

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
---
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.
-----
Best always,
s!
Scott Jensen

Jump to this post

I am a living kidney donor. On Sept 28, 2018, I donated a kidney at the Mayo Clinic in Rochester to a woman I read about in the newspaper (the lovely blonde in the attached photo). Fifteen years before a dear family friend donated a kidney to my beloved cousin Ann so I had some experience with the idea. But learning I was a perfect match for a complete stranger still blew my mind.

Because I lived in Kansas City and my recipient lived in Ft. Lauderdale, we both had to travel quite a distance to Rochester, MN for our appointments, evaluations, and the ultimate surgery. While the care at Mayo is extraordinary, I would still recommend finding a Transplant Center near your home if at all possible. In addition to traveling to Minnesota with my caregiver (my husband) four times during the donation process, I had to ship numerous blood and urine samples via FedEx, including some on dry ice (which is harder to do than you might think!). I am retired, so this extra burden was not a problem, but my husband missed 18 days of work for all the out-of-town travel. If I had donated closer to home that would have been less of an issue.

The evaluation process had a lot of ups and downs. I was a borderline donor: 61 years old, BMI of 30, borderline hypertension, blood glucose of 107. But my health was otherwise excellent, my A1C was good (4.9) and my kidney function was top-notch – creatinine of .8 and eGFR non-African-American over 60. Mayo had me run an additional test – a two-hour glucose tolerance test that provided more optimistic results. I also agreed to begin taking a low dose of Lisinopril to treat my mild hypertension. The medication gave me a terrible, dry cough (a known side effect for about 30% of people who take it), so I was switched to Losartan, which solved that problem and also brought my blood pressure under control in less than two weeks. Based on those results, Mayo approved me to donate four months after I first called their Transplant Center to inquire about volunteering.

Subsequent blood tests showed a new, unexplained incompatibility with my recipient, so we enrolled in the paired kidney exchange program. We quickly matched for a 6-person chain, which was very exciting. That chain fell apart due to an issue with another donor-recipient pair, so Mayo re-evaluated our blood tests and decided it would be safe for me to donate directly to my intended recipient.

Our first surgery date was Sept 18, 2018. After a full day of final tests I was settled into the hotel room with my husband preparing for surgery in the morning when the on-call nephrologist called from the Mayo hospital: my recipient was too sick for surgery; our procedure was cancelled. I was stunned. It did not seem possible that we had done so much to get to this point, and now it was over.

My husband and I drove home to Kansas City very unsure about what might happen next. As it turned out, Mayo’s excellent, aggressive treatment worked, and within a week my recipient was healthy enough for the transplant to continue. We drove back to Rochester where my recipient was waiting, and on Sept 28, 2018 our transplant surgeries were successful!

I recovered very quickly, with little post-op pain and no complications. I was released after two nights in the hospital, and I went back to the hotel to recover before driving home five days later. My recipient was able to fly home to Ft. Lauderdale three weeks after surgery.

I rested and recovered at home, regaining strength very quickly. Within a month I was able to accompany my husband on a business trip to NYC, where I attended several Broadway shows and walked the city streets for miles. At my 6-month follow-up at Mayo my kidney function was so strong “we’d let you donate again except you only have one kidney.” My recent two-year labs show creatinine of 1.13, which is excellent for a solo kidney. I continue to take Losartan and my blood pressure remains under control. I’ve lost 5 pounds and work (actually, struggle) to lose more. Thanks to the kidney donation process I am healthier than I have ever been, focusing on exercising, eating well, and drinking lots of water.

My recipient is doing well, too. Before COVID she traveled to Kansas City frequently to see family, and we often got together when she visited. Now we stay connected by text, phone, and Facebook. She has traveled a great deal since the transplant and had many grand adventures. She’s even gone zip lining! I often tease her that the kidney she received is having a lot more fun than the kidney I kept!

I joined with medical ethicist John D. Lantos, M.D. to write about my experiences as a living organ donor and the broader historical, scientific, and ethical issues involved in organ donation. Our book, Kidney to Share, is being published by Cornell University Press and will be released in May 2021.

Donating a kidney was complicated, difficult, and frustrating. It was also the most meaningful experience of my life. I wish everyone could have that feeling of participating in a real-life miracle.

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@marthagershun it's amazing that with so many set backs, you persisted and surgery was successful, congratulations!
I donated at Rochester Mayo January 2018, traveling from Portland,OR (recipient lived in WI) and agree with many of the reasons you stated about finding a center near home- I forgot about how difficult it was to find a lab AND the dry ice, that seemed harder to arrange than the actual surgery.
One of the benefits for me being so far from home was that I was forced to relax, no working, cleaning etc, just sleeping, reading and walking around. Had I been near home, I'm sure I would have pushed the limit on what my Drs and body wanted me to do so I was grateful that I was able to stay in MN for a bit. I did wish more than once that my recipient lived in FLA or AZ because January in MN is no joke.
I'm so glad that things worked out for both of you.

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I am a living kidney donor. On Sept 28, 2018, I donated a kidney at the Mayo Clinic in Rochester to a woman I read about in the newspaper (the lovely blonde in the attached photo). Fifteen years before a dear family friend donated a kidney to my beloved cousin Ann so I had some experience with the idea. But learning I was a perfect match for a complete stranger still blew my mind.

Because I lived in Kansas City and my recipient lived in Ft. Lauderdale, we both had to travel quite a distance to Rochester, MN for our appointments, evaluations, and the ultimate surgery. While the care at Mayo is extraordinary, I would still recommend finding a Transplant Center near your home if at all possible. In addition to traveling to Minnesota with my caregiver (my husband) four times during the donation process, I had to ship numerous blood and urine samples via FedEx, including some on dry ice (which is harder to do than you might think!). I am retired, so this extra burden was not a problem, but my husband missed 18 days of work for all the out-of-town travel. If I had donated closer to home that would have been less of an issue.

The evaluation process had a lot of ups and downs. I was a borderline donor: 61 years old, BMI of 30, borderline hypertension, blood glucose of 107. But my health was otherwise excellent, my A1C was good (4.9) and my kidney function was top-notch – creatinine of .8 and eGFR non-African-American over 60. Mayo had me run an additional test – a two-hour glucose tolerance test that provided more optimistic results. I also agreed to begin taking a low dose of Lisinopril to treat my mild hypertension. The medication gave me a terrible, dry cough (a known side effect for about 30% of people who take it), so I was switched to Losartan, which solved that problem and also brought my blood pressure under control in less than two weeks. Based on those results, Mayo approved me to donate four months after I first called their Transplant Center to inquire about volunteering.

Subsequent blood tests showed a new, unexplained incompatibility with my recipient, so we enrolled in the paired kidney exchange program. We quickly matched for a 6-person chain, which was very exciting. That chain fell apart due to an issue with another donor-recipient pair, so Mayo re-evaluated our blood tests and decided it would be safe for me to donate directly to my intended recipient.

Our first surgery date was Sept 18, 2018. After a full day of final tests I was settled into the hotel room with my husband preparing for surgery in the morning when the on-call nephrologist called from the Mayo hospital: my recipient was too sick for surgery; our procedure was cancelled. I was stunned. It did not seem possible that we had done so much to get to this point, and now it was over.

My husband and I drove home to Kansas City very unsure about what might happen next. As it turned out, Mayo’s excellent, aggressive treatment worked, and within a week my recipient was healthy enough for the transplant to continue. We drove back to Rochester where my recipient was waiting, and on Sept 28, 2018 our transplant surgeries were successful!

I recovered very quickly, with little post-op pain and no complications. I was released after two nights in the hospital, and I went back to the hotel to recover before driving home five days later. My recipient was able to fly home to Ft. Lauderdale three weeks after surgery.

I rested and recovered at home, regaining strength very quickly. Within a month I was able to accompany my husband on a business trip to NYC, where I attended several Broadway shows and walked the city streets for miles. At my 6-month follow-up at Mayo my kidney function was so strong “we’d let you donate again except you only have one kidney.” My recent two-year labs show creatinine of 1.13, which is excellent for a solo kidney. I continue to take Losartan and my blood pressure remains under control. I’ve lost 5 pounds and work (actually, struggle) to lose more. Thanks to the kidney donation process I am healthier than I have ever been, focusing on exercising, eating well, and drinking lots of water.

My recipient is doing well, too. Before COVID she traveled to Kansas City frequently to see family, and we often got together when she visited. Now we stay connected by text, phone, and Facebook. She has traveled a great deal since the transplant and had many grand adventures. She’s even gone zip lining! I often tease her that the kidney she received is having a lot more fun than the kidney I kept!

I joined with medical ethicist John D. Lantos, M.D. to write about my experiences as a living organ donor and the broader historical, scientific, and ethical issues involved in organ donation. Our book, Kidney to Share, is being published by Cornell University Press and will be released in May 2021.

Donating a kidney was complicated, difficult, and frustrating. It was also the most meaningful experience of my life. I wish everyone could have that feeling of participating in a real-life miracle.

Jump to this post

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
---
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.
-----
Best always,
s!
Scott Jensen

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