Organ Donation and Transplant: What is Your story?

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

Every transplant patient has a unique story to tell. Let's create this place to share our stories. By sharing, we can meet others like us, we can encourage people who are at the beginning of their journey, and we can support those who are on the waiting list.

Here are some questions for you to consider as you write your story:
– Focus on yourself and how you felt, what you did, who helped you.
– How did you find out that you would need an organ transplant?
– What was the waiting and recovery like for you?
– How has your life changed since your transplant?

Organ donation and transplant is a very personal. To respect the privacy of all be sure to have permission before sharing identifying details about others involved in your story, for example
– your donor/recipient (age, circumstances of death, etc)
– your caregiver or family members (say "my husband", rather than using a full name)

What is your transplant story?

Note: If you want to ask a question for another member who has posted their transplant story here in this discussion, be sure to add their @membername in your post, for example @rosemarya. Your question may already be discussed in other transplant discussions. Be sure to check here first: https://connect.mayoclinic.org/group/transplants/ That way this discussion can be reserved for member transplant stories and hopefully make it easier to read and find similar symptoms to your own.

@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.

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.

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.

REPLY

@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.

REPLY
@marthagershun

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

Fantastic story, Martha!!! Can't wait to read your book, "Kidney to Share"!

REPLY
@mauraacro

@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.

Jump to this post

That was a nice advantage – the recovery time in the hotel was especially easy – we had a lot of room service!

REPLY
@marthagershun

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

@marthagershun,
Welcome to Mayo Connect, and thank you for sharing your Transplant story. On Connect, patients share experiences to support and to offer encouragement to others who are on their own journey.
As a living donor, your experience is a powerful source of strength and hope for anyone who who reads it. It is of special benefit to anyone who is interested in learning about Living Organ Donation. Here are 2 discussions where your own experience as a living donor would be of value to anyone interested in learning more about living organ donation and miracles. I invite you to drop in anywhere and say "Hi'" or Ask a question, or Answer a question.
Transplants > From a Living Donor: One year later, what is your life like now? https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/
Kidney transplant – The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

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

Scott: I enjoyed your excerpt and looking forward to reading your book when published. I am saving your post so I can look for it. Do you have a publisher yet? So many healthy people experience the same symptoms every day and ignore them. We all have that "this cannot happen to me" because I follow the health guide rules of eating correctly, exercising and stay away from drugs and smoking. What we don't understand is that heart failure can be passed on from generation to generation even to those who follow the rules. Our son, Scott was a prime example. He was forty (40) years old, had his own landscaping business, very active, ran triathlons, and very active with his friends. He had never been overweight and did not take drugs. He had a beer with the guys on the weekends watching football. Can you imagine getting a phone call at work that your son is in ICU on a ventilator because he had dropped dead of heart failure. The ambulance crew brought him back; but it was too late he lost all brain function due to not getting enough oxygen to his brain and organs. We too, like you, stated "this cannot be happening". As the family rushed to his side we were told the sad news and all had to say goodbye to him. My husband just had a heart transplant on October 7th at Mayo Jacksonville. He struggled with congested heart failure for 4 years. In and out of the hospital. The doctors did everything possible to stop these attacks by implanting pacemakers, defibrillators, watchman and he was on a new FDA study for the WISE system. He was the first WISE system implant in Florida. In May the doctors said "it is time for the Mayo as we have done all we can". He will be 74 this November and we knew the cutoff was 75 to be eligible for a transplant. We were lucky as he qualified and Mayo and their due diligence made it happen. We are blessed. Please keeping giving us excerpt of your upcoming book.

REPLY
@jstoll

Scott: I enjoyed your excerpt and looking forward to reading your book when published. I am saving your post so I can look for it. Do you have a publisher yet? So many healthy people experience the same symptoms every day and ignore them. We all have that "this cannot happen to me" because I follow the health guide rules of eating correctly, exercising and stay away from drugs and smoking. What we don't understand is that heart failure can be passed on from generation to generation even to those who follow the rules. Our son, Scott was a prime example. He was forty (40) years old, had his own landscaping business, very active, ran triathlons, and very active with his friends. He had never been overweight and did not take drugs. He had a beer with the guys on the weekends watching football. Can you imagine getting a phone call at work that your son is in ICU on a ventilator because he had dropped dead of heart failure. The ambulance crew brought him back; but it was too late he lost all brain function due to not getting enough oxygen to his brain and organs. We too, like you, stated "this cannot be happening". As the family rushed to his side we were told the sad news and all had to say goodbye to him. My husband just had a heart transplant on October 7th at Mayo Jacksonville. He struggled with congested heart failure for 4 years. In and out of the hospital. The doctors did everything possible to stop these attacks by implanting pacemakers, defibrillators, watchman and he was on a new FDA study for the WISE system. He was the first WISE system implant in Florida. In May the doctors said "it is time for the Mayo as we have done all we can". He will be 74 this November and we knew the cutoff was 75 to be eligible for a transplant. We were lucky as he qualified and Mayo and their due diligence made it happen. We are blessed. Please keeping giving us excerpt of your upcoming book.

Jump to this post

What a heart-warming story – full of sadness, but also hope and happiness. I'm so glad to hear your husband received the care he needed at Mayo – they do, indeed, work miracles. Our book will be published next May by Cornell University Press. I will absolutely provide updates to this group, including a sneak peak at the cover art, which we hope to see very soon! Thank you for your encouragement for that project.

REPLY
@jerrydrennan

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

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Hello, I wanted to give everyone a up date. I am alive and well after having a liver transplant 2.5 years ago. My transplant doctor warned me that I might gain weight. I gained and lost 20 pounds. I have gained all my muscle mass back. I am still on Tacrolimus 5 per day. I feel good, and Have mental clarity. I am blessed that I was able to live through such a event and I credit the fine people at Cedars-Sinai Transplant center for my out come. I can't express more the fact that your chances of success are better if you find out as much information about your condition as possible and that includes finding a transplant specialist to evaluate your condition. Keep yourself in good shape other than the obvious, and ask questions of the health professionals you deal with.
If you are in need of a parasentesis you may be better off scheduling with interventional radiology instead of the emergency room. All is well and best wishes to all. TIM

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Thank you so much for sharing. I am in the testing process to be a living donor for my mom. I fly to Arizona mid November to complete my testing process and if all goes well then I will be having surgery in January.

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@jillmartinez55

Thank you so much for sharing. I am in the testing process to be a living donor for my mom. I fly to Arizona mid November to complete my testing process and if all goes well then I will be having surgery in January.

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What a blessing that you may be able to donate to your mom. Best of luck with the testing and, hopefully, subsequent surgery!

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