Organ Donation and Transplant: What is Your story?

Posted by Rosemary, Volunteer Mentor @rosemarya, Oct 26 10:36am

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.

Welcome. This discussion is for everybody involved in organ transplantation. You do not need to be a gifted writer to tell your story. If you like to write in paragraphs, or if you like to use lists or bulleted items please feel free to do so. Your story might be long or it might be short, and you can share what you are comfortable to share about yourself.
We look forward to reading your story.

@glinda, @billacaregiver, @gphetteplace, @azdan99, @jolinda, @gaylea1, @2011panc, @john1492, @tasher3433, @btwest6, @tjgisewhite, @jsw, @michaelswaim, @loungingsofa70, @mpow00, @estrada53, @cmael, @jodeej, @jerrynord,@ca426, @almula, @amyintucson, @guidant07 and all members.

REPLY

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.

REPLY
@rosemarya

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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@rosemarya thank you for sharing. you re true gift to all of us in our journey.

REPLY

MY STORY

My experience with kidney disease started when I was in my early twenties. I had been having recurring uti’s. My doctor referred me to a urologist. After having an IV pyelogram, which he requested, I went back for a follow up visit. He told me that my kidneys look as though I have a lot of scarring and my kidneys were small due to chronic pyelonephritis. At the time, I was naive and felt like the diagnosis wasn’t right since other than the recurring bladder infections, I felt pretty good.
Years went by and the bladder infections, which at times went into the kidneys, seemed to be under control. Then, when I was in my fifties, my blood work started showing that my kidney function was going down. She referred me to a nephrologist. He talked to me about my kidney function and told me an analogy about how it’s like trying to run a 6 cylinder car on 4 cylinders. The stress on the kidneys will eventually cause them to fail. This scared the living daylights out of me and I thought my life was not going to last long. I continued seeing the nephrologist once a year at first and more frequently as my kidney function deteriorated. I was eventually told that I should meet with a representative about dialysis, but there was the option of having a transplant. They seemed to think that because of my age of 74, there probably wasn’t much of a chance for me to get a transplant. I thought that peritoneal dialysis was what I’d choose. My family, however, thought that I should try for a transplant and I had two daughters and a grandson that would be willing to be tested for a match. My grandson was ruled out right away, when he contacted Mayo, because he’s a type 1 diabetic. Two of my 3 daughters were tested and found to both be a match.
In Nov of 2017, I went to Mayo for 3 days to be tested to see if I could be a candidate for a kidney transplant. I was very nervous. I felt as though this was all surreal. I felt pretty good, I thought, and can’t be at the point of needing a transplant. My GFR was 13. After all of the testing and finding out that I was in pretty good health for having a transplant, the doctor said that she was willing to present my case before the board. The only negative was my frailty score and that was because of arthritis in my hands. Everything else was fine. About a week later, I found out that I was approved for a transplant. Since both daughters were a match, they decided between them which one would be the donor. My donor daughter was very enthusiastic about being a donor and was found to be a good candidate to give me one of her kidneys.
We set a date for April, based on the weather being safe then, without snowstorms being likely. I rented a house from AirBNB for a month. My oldest daughter would be the caretaker for both me and her sister. My husband also stayed with us. His dementia made him unable to be the main caretaker, but he was a help. My daughter’s family stayed at the house for a few days before I went there to stay.
On the day of the transplant, I was pretty scared and shaking. It went well and I felt pretty good when I was back in my room. My daughter was right down the hall from me.
After the anesthesia wore off, I wasn’t feeling as well. I had a problem with painful abdominal cramping for a couple of days, before they had me drink some magnesium citrate. They had given me morphine for the pain before the laxative finally kicked in. It worked so well that I was up all night having accidents in the bed and on the way to the bathroom. I think that was probably the worst part of my recovery. The diarrhea continued until I had been out of the hospital for a few days, although it continued to improve. My other problem was that I started showing signs of rejection. To treat it, I had daily infusions of Medrol, a steroid for about 5 days. This stopped the rejection and I was told that my immune system was in the 17% of people my age that have a stronger one. Because of that, they hadn’t given me enough immunosuppressants. My abdominal pain from the surgery lasted for about 7 weeks, but I felt good otherwise. I also realised that even though I thought I still felt pretty good before surgery, I definitely had much more energy and generally felt much better after. It’s now been 2 ½ years since my surgery and things are going well, except for one thing. The BK virus showed up at my last Mayo checkup in May. They treated it by lowering my Cellcept dose. It is still showing up in my labs, but is slowly coming down. Now, instead of doing labs every two weeks, I can go back to once a month. My donor daughter is doing terrific and we’re very close.
Sometimes, it still seems like a dream that I’ve had a kidney transplant and I’m so grateful.

Cmael

REPLY

My Heart Transplant Story

2008 Flu Virus causes Pericarditis, Heart Failure & Hospitalization resulting in an Ejection Factor (EF) of 5%. I went home with a combination pacemaker/ defibrillator plus antiarrhythmic drugs.

2008-2011 Recovered well EF returned to the 45% range and life was normal. I enjoyed hiking and camping working around the house, Worked Full time as a Communication Technician.

2011-2015
Received my first of a few Defibrillator shock’s, my Cardiologist recommended me to an Electrophysiologist (EP) Cardiologist.
Two Successful Mapping and Ablation’s with Medication Adjustment, Quit Smoking after 30+ years

November 2015 Third Ablation (different Doctor), very Un-Successful and not needed, my advice always questions a major surgery if there is no urgent need.
Post procedure I went thru the worst week in my life. Multiple arrhythmias, 8 shocks all within a few hours. One positive I decided alcohol was not my friend and gave it up also. Glad I did since Heart Transplants are out if you indulge.

January 2016 New EP Doctor recommended by my other doctors. Used Medication and Pacemaker adjustments to control Arrhythmias.

November 2017 my heart finally started having too many arrhythmias and after a couple more ablations my EP doctor recommended that he wanted to have an evaluation at Mayo clinic just to be ready if it became likely that a Heart Transplant was needed.

December 2017 I was Transferred to Mayo for Evaluation (6th), underwent a Thyroidectomy due to Amiodarone Toxicity (13th), Discharge to Home (14th), But back for good on the 18th due to Arrhythmias.

Mayo Transplant Committee Approved Replacement(22nd) pending Insurance, Final Ablation Tried but Heart to far gone (26th), Listed on UNOS Status Code 2 (29th). It got to the point that only IV drugs could control my arrhythmias, so I was probably not leaving the Hospital.

Then on the 31st I became unresponsive and had what appeared to be a stroke. What was interesting is during that time I was in the strangest dream I’ve ever had, turned out I had become allergic to the very drug keeping me alive IV Amiodarone. Well this made things worse, so I was brought up to a UNOS Status 1b on the transplant list.

January 2nd, 2018 tried an MRI in hopes of finding the bad paths but having a pacemaker made that difficult.

January 4th, 2018 What an interesting night, they scheduled me for a PET scan, and they said that it works better if you have some fatty food. Being Late & the Cafeteria closed my wife was going to go out and get me something, I wanted a steak, but it was probably just be a burger. Just before she was about to leave the Nurse came in and said forget the food your now NPO. Well shucks I was looking forward to the steak. I asked why and She said the Dr will be in shortly to explain.

Well that is when I met my Transplant Surgeon, so would you like a new Heart? Looking at my Wife we both thought that was the news but now confirmed. Well of course we answered yes, but there was an issue with this heart and he was not able to tell us what, I said can you give me some odds and his answer was “If it was my wife, I would recommend it” I said that’s good enough for us let’s do it. He did say he had a policy that he goes and looks at it himself before his finial decision so you will not know until you wake up if I decided it was a good one.

January 5, 2018 Heading to the pre-op Excited and in wonder at the same time. But I knew this was all in God’s plan for my life.
First the paperwork and the best part of that was signing the pacemaker removal. After the past couple of years, it couldn’t be gone fast enough. We’ll all prep completed and off to La La land for me. Next thing I remember was back in ICU with enough stuff hooked up to me to wonder what I had gotten myself into. No turning back now had a different Heart and Praying it was a good one

October 2020 I am almost 3 years post-transplant with a great Heart and doing very well. I’m walking 4-5 miles at least 5 days a week, Hiking and I’m back on the golf course. Life is looking pretty good. I won’t say I haven’t had issues it seems I catch virus easy I have had CMV and Parvo B19 which I get treatments for. But they really don’t cause any symptoms and except for the monthly IVIG treatments and extra antibiotics I really do enjoy my life. I had to retire due to my age and that my last position would not be contusive to my new requirements and to close to retirement age to retrain into something else. I now enjoy volunteering at my church Live-Streaming and Website Administration which brings me satisfaction and keeps me busy.
There are many other detains I left out to try and keep it readable but Please feel free to ask any Questions and I can elaborate.

REPLY
@jerrydrennan

@rosemarya thank you for sharing. you re true gift to all of us in our journey.

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@jerrydrennan, it is wonderful to hear from you. I hope you will add your own your story highlights here, too!
Rosemary

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@danab

My Heart Transplant Story

2008 Flu Virus causes Pericarditis, Heart Failure & Hospitalization resulting in an Ejection Factor (EF) of 5%. I went home with a combination pacemaker/ defibrillator plus antiarrhythmic drugs.

2008-2011 Recovered well EF returned to the 45% range and life was normal. I enjoyed hiking and camping working around the house, Worked Full time as a Communication Technician.

2011-2015
Received my first of a few Defibrillator shock’s, my Cardiologist recommended me to an Electrophysiologist (EP) Cardiologist.
Two Successful Mapping and Ablation’s with Medication Adjustment, Quit Smoking after 30+ years

November 2015 Third Ablation (different Doctor), very Un-Successful and not needed, my advice always questions a major surgery if there is no urgent need.
Post procedure I went thru the worst week in my life. Multiple arrhythmias, 8 shocks all within a few hours. One positive I decided alcohol was not my friend and gave it up also. Glad I did since Heart Transplants are out if you indulge.

January 2016 New EP Doctor recommended by my other doctors. Used Medication and Pacemaker adjustments to control Arrhythmias.

November 2017 my heart finally started having too many arrhythmias and after a couple more ablations my EP doctor recommended that he wanted to have an evaluation at Mayo clinic just to be ready if it became likely that a Heart Transplant was needed.

December 2017 I was Transferred to Mayo for Evaluation (6th), underwent a Thyroidectomy due to Amiodarone Toxicity (13th), Discharge to Home (14th), But back for good on the 18th due to Arrhythmias.

Mayo Transplant Committee Approved Replacement(22nd) pending Insurance, Final Ablation Tried but Heart to far gone (26th), Listed on UNOS Status Code 2 (29th). It got to the point that only IV drugs could control my arrhythmias, so I was probably not leaving the Hospital.

Then on the 31st I became unresponsive and had what appeared to be a stroke. What was interesting is during that time I was in the strangest dream I’ve ever had, turned out I had become allergic to the very drug keeping me alive IV Amiodarone. Well this made things worse, so I was brought up to a UNOS Status 1b on the transplant list.

January 2nd, 2018 tried an MRI in hopes of finding the bad paths but having a pacemaker made that difficult.

January 4th, 2018 What an interesting night, they scheduled me for a PET scan, and they said that it works better if you have some fatty food. Being Late & the Cafeteria closed my wife was going to go out and get me something, I wanted a steak, but it was probably just be a burger. Just before she was about to leave the Nurse came in and said forget the food your now NPO. Well shucks I was looking forward to the steak. I asked why and She said the Dr will be in shortly to explain.

Well that is when I met my Transplant Surgeon, so would you like a new Heart? Looking at my Wife we both thought that was the news but now confirmed. Well of course we answered yes, but there was an issue with this heart and he was not able to tell us what, I said can you give me some odds and his answer was “If it was my wife, I would recommend it” I said that’s good enough for us let’s do it. He did say he had a policy that he goes and looks at it himself before his finial decision so you will not know until you wake up if I decided it was a good one.

January 5, 2018 Heading to the pre-op Excited and in wonder at the same time. But I knew this was all in God’s plan for my life.
First the paperwork and the best part of that was signing the pacemaker removal. After the past couple of years, it couldn’t be gone fast enough. We’ll all prep completed and off to La La land for me. Next thing I remember was back in ICU with enough stuff hooked up to me to wonder what I had gotten myself into. No turning back now had a different Heart and Praying it was a good one

October 2020 I am almost 3 years post-transplant with a great Heart and doing very well. I’m walking 4-5 miles at least 5 days a week, Hiking and I’m back on the golf course. Life is looking pretty good. I won’t say I haven’t had issues it seems I catch virus easy I have had CMV and Parvo B19 which I get treatments for. But they really don’t cause any symptoms and except for the monthly IVIG treatments and extra antibiotics I really do enjoy my life. I had to retire due to my age and that my last position would not be contusive to my new requirements and to close to retirement age to retrain into something else. I now enjoy volunteering at my church Live-Streaming and Website Administration which brings me satisfaction and keeps me busy.
There are many other detains I left out to try and keep it readable but Please feel free to ask any Questions and I can elaborate.

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What a journey! Thank you for sharing. It sounds as though your positive attitude helped as much as anything else☺️

REPLY

What a miracle. My husband went through the same steps as you for 3 and half years. October 7th he received his new heart and we felt so blessed. He was home in 10 days after surgery and we were on our way to recovery. As his caregiver I had no idea what I was in for. We have always been close and really loved being with each other, and I imagined it would be the same after the new heart. I suddenly realized that his life was now in my hands and I had to follow medication instructions and food instructions by the book. The first couple of days of was a nervous wreck, but finally got into the rhythm of the meds and watching what I cooked and served him. He is diabetic and of course he craves sugar or anything sweet and crunchy. On Prednisone his craving became worse and all of a sudden I became Nurse Kratcit on withholding sweets. We had a few talks on the issue but when the craving came there was no stopping him. Finally in the last couple of days I have been showing him the pattern of his blood gluose since he started wanting sugar-free cookies (no such thing but if they say sugar free he believes it). He has finally realized the difference in his blood gluose before and after the 2 cookie binges and he came around. He is doing well and very happy with the Mayo Transplant Team. Hoping for a speedy recovery and keeping his vitals where they need to be. Thanks for your story.

REPLY
@jstoll

What a miracle. My husband went through the same steps as you for 3 and half years. October 7th he received his new heart and we felt so blessed. He was home in 10 days after surgery and we were on our way to recovery. As his caregiver I had no idea what I was in for. We have always been close and really loved being with each other, and I imagined it would be the same after the new heart. I suddenly realized that his life was now in my hands and I had to follow medication instructions and food instructions by the book. The first couple of days of was a nervous wreck, but finally got into the rhythm of the meds and watching what I cooked and served him. He is diabetic and of course he craves sugar or anything sweet and crunchy. On Prednisone his craving became worse and all of a sudden I became Nurse Kratcit on withholding sweets. We had a few talks on the issue but when the craving came there was no stopping him. Finally in the last couple of days I have been showing him the pattern of his blood gluose since he started wanting sugar-free cookies (no such thing but if they say sugar free he believes it). He has finally realized the difference in his blood gluose before and after the 2 cookie binges and he came around. He is doing well and very happy with the Mayo Transplant Team. Hoping for a speedy recovery and keeping his vitals where they need to be. Thanks for your story.

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@jstoll, I would love to hear more of your story as a caregiver, caring for your husband while waiting for a heart to be available, getting the call, waiting during surgery and the care at home now. What's it like being bedside and involved?

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@jstoll

What a miracle. My husband went through the same steps as you for 3 and half years. October 7th he received his new heart and we felt so blessed. He was home in 10 days after surgery and we were on our way to recovery. As his caregiver I had no idea what I was in for. We have always been close and really loved being with each other, and I imagined it would be the same after the new heart. I suddenly realized that his life was now in my hands and I had to follow medication instructions and food instructions by the book. The first couple of days of was a nervous wreck, but finally got into the rhythm of the meds and watching what I cooked and served him. He is diabetic and of course he craves sugar or anything sweet and crunchy. On Prednisone his craving became worse and all of a sudden I became Nurse Kratcit on withholding sweets. We had a few talks on the issue but when the craving came there was no stopping him. Finally in the last couple of days I have been showing him the pattern of his blood gluose since he started wanting sugar-free cookies (no such thing but if they say sugar free he believes it). He has finally realized the difference in his blood gluose before and after the 2 cookie binges and he came around. He is doing well and very happy with the Mayo Transplant Team. Hoping for a speedy recovery and keeping his vitals where they need to be. Thanks for your story.

Jump to this post

@jstoll Congratulations on the new Heart That's awesome. Hang in there tho the first 6 months will be a challenge with all the appointments and biopsies. But life will settle down pretty quickly. My wife also went thru what life would be like going forward. But it will become so routine after a while you won't even notice it. Any questions come up please ask.
Dana

REPLY
@rosemarya

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.

Jump to this post

Don't know what to say after reading your story. Just that you are an asset to all of us that have or are having a transplant. You are contributing back to other more than you realize.

REPLY

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

REPLY
@scottij

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

Hi Scott, please share the release date. This book will be so helpful to others. Those in denial, those in need, those going through transition,, and caregivers of all! Thanks fir sharing.

Liked by cehunt57

REPLY
@scottij

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

Exactly what happened to my wife. But found out later it ran in the family.

Liked by cehunt57

REPLY

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.

Deb and Martha - hug, Sushi House, Town Center, 11-26-19

Martha and Deb, Mayo, 9-29-18 (4)

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