Organ Donation and Transplant: What is Your story?

I have always generally tried to take care of myself. In early 2021 after being holed up during the COVID quarantine period, I became more serious about fitness, reaching 100+ mile/week on my bike and working with my trainer 3 days/week. In February 2022, I noticed that I was laboring more and wasn’t able to put in as many miles on my bike or work out as much. After feeling some discomfort across my shoulders near the end of a 20+ mile bike ride in early March, I visited a cardiologist who noticed an irregularity in my electrocardiogram and scheduled further tests for early May. Meanwhile, I started having a lot of fluid in my lungs and was diagnosed as having an upper respiratory infection. After 3 rounds of antibiotics, nothing was improving; I had a hard time sleeping and breathing was getting more and more labored. After several other tests ordered by my primary care doctor, a CT scan revealed that my heart was enlarged; I received a call to proceed immediately to the Arizona Heart Hospital here in Phoenix.

It was determined that I was in heart failure; my heart was very weak, with an ejection fraction of 10, a leaking valve causing the fluid in my lungs, and a major artery completely clogged. I had in fact experienced a heart attack during that bike ride in early March. I was advised that my heart was too weak to endure open heart surgery and attempts to stent the blocked artery were unsuccessful.

In early May, then being diagnosed in end-stage heart failure, I was transferred to Mayo Clinic here in Phoenix for further tests and to determine whether I was a candidate for a heart transplant or if any other courses of action would be appropriate. After a long series of tests and periods both at Mayo Clinic Hospital and at home, I was placed on the heart transplant list on June 27. On June 29, I received a call that a heart was available and transplantation was early morning on June 30. I am so fortunate to have been matched with a donor so quickly.

I am now almost 3 months out from transplant and my recovery is going remarkably well, with no signs of rejection to date, and no other complications beyond a small blood clot attributed to the surgery. Doctors have attributed my fairly quick recovery to my being in good physical condition prior to surgery. Cardiac rehab has been going well and I will go back to work October 1.

I cannot describe the gratitude I have for my donor and their family; not a day goes by that I don’t think about them. I sense a connection with my donor that I cannot describe. I don’t know if I will ever connect with the family, but I hope knowing their loved one’s heart has given someone a new lease on life relieves some of the pain of their loss.

This has of course been the most life-affecting experience I have ever had and feel so fortunate to be where I am after only 5 months since my diagnosis. I would enjoy connecting with others in the heart transplant community, regardless of where you are in the process, pre-transplant and waiting or post-transplant. Regardless of whether I connect with my donor’s family, I would also enjoy connecting with donor family members to learn what the experience is like for them, realizing the amazing gift that their loved one has given.

I have always generally tried to take care of myself. In early 2021 after being holed up during the COVID quarantine period, I became more serious about fitness, reaching 100+ mile/week on my bike and working with my trainer 3 days/week. In February 2022, I noticed that I was laboring more and wasn’t able to put in as many miles on my bike or work out as much. After feeling some discomfort across my shoulders near the end of a 20+ mile bike ride in early March, I visited a cardiologist who noticed an irregularity in my electrocardiogram and scheduled further tests for early May. Meanwhile, I started having a lot of fluid in my lungs and was diagnosed as having an upper respiratory infection. After 3 rounds of antibiotics, nothing was improving; I had a hard time sleeping and breathing was getting more and more labored. After several other tests ordered by my primary care doctor, a CT scan revealed that my heart was enlarged; I received a call to proceed immediately to the Arizona Heart Hospital here in Phoenix.

It was determined that I was in heart failure; my heart was very weak, with an ejection fraction of 10, a leaking valve causing the fluid in my lungs, and a major artery completely clogged. I had in fact experienced a heart attack during that bike ride in early March. I was advised that my heart was too weak to endure open heart surgery and attempts to stent the blocked artery were unsuccessful.

In early May, then being diagnosed in end-stage heart failure, I was transferred to Mayo Clinic here in Phoenix for further tests and to determine whether I was a candidate for a heart transplant or if any other courses of action would be appropriate. After a long series of tests and periods both at Mayo Clinic Hospital and at home, I was placed on the heart transplant list on June 27. On June 29, I received a call that a heart was available and transplantation was early morning on June 30. I am so fortunate to have been matched with a donor so quickly.

I am now almost 3 months out from transplant and my recovery is going remarkably well, with no signs of rejection to date, and no other complications beyond a small blood clot attributed to the surgery. Doctors have attributed my fairly quick recovery to my being in good physical condition prior to surgery. Cardiac rehab has been going well and I will go back to work October 1.

I cannot describe the gratitude I have for my donor and their family; not a day goes by that I don’t think about them. I sense a connection with my donor that I cannot describe. I don’t know if I will ever connect with the family, but I hope knowing their loved one’s heart has given someone a new lease on life relieves some of the pain of their loss.

This has of course been the most life-affecting experience I have ever had and feel so fortunate to be where I am after only 5 months since my diagnosis. I would enjoy connecting with others in the heart transplant community, regardless of where you are in the process, pre-transplant and waiting or post-transplant. Regardless of whether I connect with my donor’s family, I would also enjoy connecting with donor family members to learn what the experience is like for them, realizing the amazing gift that their loved one has given.

@jcwilliams Congratulations! What a wonderful story! I am a heart/double lung transplant done in 2021 at Mayo in Rochester. I too am very active and can relate to your journey. And attest to the fact that the fitter you are going into to surgery, the better your recovery. I now walk, lift weights and ride my horses every day. It’s a blessing to have this gift and be able to enjoy life again.
Good luck in your continued recovery. I’m sure you have some goals that are helping you make great progress-would you care to share those goals?

@jcwilliams,
Congratulations on your heart transplant and recovery for your heart transplant on June 30 of this year! That date will always be a special one for you.

I would like to extend my hand in a virtual handshake to Welcome you to Mayo Connect. I have located 2 discussions where heart transplant members have shared some experiences and concerns:
-Preparing for a heart transplant: Would love to chat with others
https://connect.mayoclinic.org/discussion/preparing-for-a-heart-transplant/
-Gut problems after heart transplant
https://connect.mayoclinic.org/discussion/gut-problems-after-heart-transplant/
I know that there are heart transplant members who have been active in many of the 'non-heart' transplant discussions because many of the post transplant living issues are similar for all organs. You can scroll thru the discussion list, and join in anywhere, or you might want to begin a new heart transplant related discussion.

I will be looking for you in other discussions. As a liver/kidney recipient, I am interested to learn more about your experience.
Thank you for sharing your story. Thank you fro giving hope and encouragement to others.

My Story That I Call "Maisha"

Is this really happening? No way! Yes, way…because here I am in the O.R. about to be put to sleep. Anesthetic medication is already making its way through the IV, and a mask is covering my nose and mouth. I don’t see it, but I know there’s a kidney somewhere in this room…or nearby… about to be transplanted into my abdomen. But how did I get here?

I was diagnosed with sarcoidosis (an auto immune disease) in 1989 which was treated with prednisone for 13 months. The disease is not curable, but it went into remission. And since then, I had absolutely no further problem with it…or so I thought. Over the years that followed, I was diagnosed with high calcium levels which my then (now former) PCP was “watching” and with what she casually referred to as “renal insufficiency.” At the time, I didn’t know how serious “renal insufficiency” was or could become; and, so, I wasn’t concerned about it because my PCP didn’t appear to be concerned about it. But I began to do some research, becoming familiar with creatinine and eGFR. And when I saw these numbers take a serious hit, and my PCP failed to mention these significant changes to me, I self-referred to a nephrologist at the Cleveland Clinic (which is not the hospital where my PCP practiced). But I decided to go to the Cleveland Clinic because of their expertise.

The nephrologist informed me that the sarcoidosis and high calcium levels caused kidney damage and progressively deteriorating kidney function. I had not connected the sarcoid and hypercalcemia with the deteriorating kidney function. It was my nephrologist that made the connection.
Like I said, I thought that when my sarcoid went into remission, I was done with it…that I was “home free.” Well, I never had any flare ups since then, but the damage to my kidneys had already started and continued to progress. When I began seeing the nephrologist, my CKD was already at level 3b. The downward progression was a long, slow process and I was able to maintain level 4 CKD for several years. But as the situation got worse, the “d” word started popping up…finding its way into conversations with my nephrologist during my appointments. I had a dialysis nurse assigned to me, and I was sent to a dialysis center for education purposes and to decide what type of dialysis I wanted.

What kind of dialysis I wanted???? I didn’t want any kind of dialysis!

Then, in April of last year, my nephrologist said she wanted to recommend me for a kidney transplant. What??? I had NEVER considered transplant…at least not for me. Don’t get me wrong…I thought transplants were great. I had been a caregiver and support for a heart transplant patient years earlier and had also been one of the chaplains for in-patients on the Transplant Floor at Cleveland Clinic. So, I was familiar with transplants. Who would have thought back then, though, that I would end up in one of those beds on the Transplant Floor!

But fast forward to 2023…who was going to give ME a kidney transplant? I thought: I’m too old and I have a ton of comorbidities. I just knew that when they saw my age and health record that that would be the end of that! But it wasn’t…

The Transplant Center contacted me and arranged for me to have a battery of diagnostic tests, labs, and interviews two months later, in June. And lo and behold, at the conclusion of all their evaluations, they informed me that they were submitting my information to the Selection Committee. Of course, my presumption was that the committee would stamp my file: DENIED! But they didn’t…

On July 31st my pre-transplant coordinator called me and told me that I was accepted. What???... Me???... Wow…I was “Listed!”
OK, I figured it didn’t matter anyway because it could take up to 5 years (or more) to get a kidney. Well, it didn’t…

On August 26th I got a call from Transplant: they had a kidney for me…less than 1 month after being listed. Unfortunately, as they continued to check the kidney they decided it wasn’t the best match for me. So, no kidney that day. I told you I wouldn’t get one!

But wait…on November 1st at 4:41am my phone rang. It was Transplant. They had another kidney. They told me that when they get a kidney, they call a few candidates in case they can’t get in touch with one, or in case another turns down the kidney, or they won’t be able to get to the hospital in time. I was number two in line for that kidney, but the number one in line got it. So, no kidney that day either.

Somebody once said: “The third time is the charm.” Well, that turned out to be true for me because on November 28th I got a third call from Transplant…and I was number one in line for this one.

So, on the morning of November 29th, 2023…after 34 years of deteriorating kidney function…despite my age…and despite my health history… after just under 4 months on “the List”…without even asking about or seeking to have a transplant…here I am in the O.R. about to get a kidney.

I had a successful transplant. The kidney worked “right out the box.” My fear was that it would take time – days, weeks, months, maybe never …for the kidney to wake up, and I’d end up on dialysis anyway…even if only temporarily. My surgery was a robot-assisted kidney transplant which involves a few tiny incisions in the abdomen. Because of that, healing was quick. And from the time that I was transferred to my room after surgery...to this day...I have not had any pain associated with the transplant and, so, have not needed nor taken any pain medication. I was up and walking around my hospital floor the day after the transplant, and I was discharged to go home on December 2nd, just two days after the transplant…and two days before my birthday. What a great birthday present I received!

I am now 11 months post transplant and I'm feeling great and doing well. My Transplant Team is very pleased with my progress and my labs. My transplant was what they call preemptive…meaning that I was transplanted before ever going on dialysis. And, so, you know how very grateful and elated I am over that answer to my prayer. My adopted kidney, which I named Maisha (which means “life”) is working well and taking good care of me…and I’m doing my best to take care of it.

This has been an incredible journey. What I thought would never happen… happened. The transplant has been a blessing to me, and I consider myself blessed. And I’m oh so grateful to God, to my donor, to my donor’s family, to the Cleveland Clinic Transplant Team, and to my family and friends who supported me…and are still supporting me through this ongoing journey. And, of course, I’m grateful to Maisha. 😊❤️

Congratulations

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

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

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

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

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

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

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

@scottij
I just began posting on Connect this past July and I recently came across one of your posts from November of 2020 on the thread titled "Transplant anti-rejection medications. What's your advice?" I wanted to contact you so I thought I'd check this site that was new to me to see if you had posted your story here. And lo and behold...here you are!
First of all, congratulations on your life-saving heart transplant, and I pray that you are continuing to do well. I enjoyed reading your post and I love the poem you shared at the beginning as well as your new rule to live by at the end: Face reality as it is and not as you want it to be. The poem and your rule will now become words for me to remember and live by, as well,
I plan to go through this thread to read all of the interesting stories shared by transplant recipients. We all have different stories and have come to the same destination of transplant via different roads.
The reason I wanted to contact you is that in your post from the thread "Transplant anti-rejection medications. What's your advice?" you mentioned that you had named your new heart "Dave." I thought I was the only person who named their new transplanted organ. I had a kidney transplant 11 months ago and named my adopted kidney "Maisha" which means life. Maisha is treating me well, and I pray that Dave is treating you well. I call Maisha my adopted kidney because, unfortunately, her original host passed away and Maisha no longer had a viable home. So, I was offered, and I gladly adopted her. And I'm trying my best to be a good Mom to her. 😊
Scott, best wishes to you.

@scottij
I just began posting on Connect this past July and I recently came across one of your posts from November of 2020 on the thread titled "Transplant anti-rejection medications. What's your advice?" I wanted to contact you so I thought I'd check this site that was new to me to see if you had posted your story here. And lo and behold...here you are!
First of all, congratulations on your life-saving heart transplant, and I pray that you are continuing to do well. I enjoyed reading your post and I love the poem you shared at the beginning as well as your new rule to live by at the end: Face reality as it is and not as you want it to be. The poem and your rule will now become words for me to remember and live by, as well,
I plan to go through this thread to read all of the interesting stories shared by transplant recipients. We all have different stories and have come to the same destination of transplant via different roads.
The reason I wanted to contact you is that in your post from the thread "Transplant anti-rejection medications. What's your advice?" you mentioned that you had named your new heart "Dave." I thought I was the only person who named their new transplanted organ. I had a kidney transplant 11 months ago and named my adopted kidney "Maisha" which means life. Maisha is treating me well, and I pray that Dave is treating you well. I call Maisha my adopted kidney because, unfortunately, her original host passed away and Maisha no longer had a viable home. So, I was offered, and I gladly adopted her. And I'm trying my best to be a good Mom to her. 😊
Scott, best wishes to you.