Organ Donation and Transplant: What is Your story?

I did get a nice card and letter from the lady who received my kidney. I just wrote her back inquiring to get a little more information as I donated through the shared donor program.

Scott, I'm also with you on who my donor was. I have only written 2 letters but no response yet. I too just want to know a bit about them at least maybe how old and was it a Man or Women. The women part may explain my increase in emotions. But most people I tell that too say I'm just more grateful to get a new lease on Life. Anyway maybe it's tme to write another one. Do you actually pick a certian day to write? Like transplant day or some other milestone?

Dana,
I have promised myself to write twice a year with the target dates of Dec 30 (anniversary) and June 30 (mid-year). I start drafting about 30 days ahead and the nature of my letters has changed. All involve gratitude, but the first two were more focused on me and the last three have been focused on how hard it must have been for the donor family to let their son go. Letter #3 was cued by watching a scene from a comedy show involving a transplant. Letter #4 was motivated by a song as was Letter #5. I do know a bit more about my donor than most. The original planned recipient backed out from fear. I was called, after only three days on the list, and told that if I did not take the heart it would go to waste. My answer was going to be a firm yes, but the caller said she was authorized to share some additional information to help motivate my decision. So, I was told the donor was a young man in his early 20s and he was already at Mayo. My only request from the donor family is to know my donor's first name and desires because from December 30, 2019, he and I go together as one. And I never want to forget his sacrifice so I will remember his name and together will complete some of his desires.

Scottij, I would enjoy the opportunity to discuss your transplant. Please private message me.
(Promise this isn’t spam!)
@scottij

@marylou3333, I have removed your personal email address from your post. We recommend that member not share their personal identifying information but rather use the secure private messaging function.

@scottij can send you a private message if he chooses.

I would like to underline the benefits of sharing with the community and gaining from the experience and knowledge of many in the Transplants group.

@marylou3333, I want to reach out to welcome you to Connect. I am glad that you have entered this discussion group where members have shared their own transplant stories. Each one is unique and a beautiful insight into the miracle of organ donation.
Marylou, Are you a transplant recipient, donor, or a loved one? What brings you to Connect?

So, in 1993,at the ripe age of 42 I had what turned out to be my second heart attack after walking 18 holes of golf. Got home, went to the video rental store and quit smoking after 20 years about 10 minutes before the ambulance arrived.

Had a triple bypass and was told not to count on a long life span with an 18 ejection fraction. 3 laps around the pool walking tired me out. Somehow after 3 months I was confounding my cardiologist. So he told me to slowly increase my duration and speed on a treadmill. 6 months later I walked 5 miles in one hour nonstop with a 3% grade. Physically fit I returned to skiing.

3 years later I was starting to have minor problems so I started on Coreg which returned me to full strength at a low dose. In the year 2000 after completing a stress test on a treadmill I flatlined. Resulting in the installation of an AICD. In 2003 while skiing I was shocked walking down the street after skiing, and followed with another shock 2 months later. The pacemaker was activated and I returned to normal.

In 2006 I traveled to Bangkok from Spokane to try a stem cell treatment which failed. For the next 5 years I had issues with 2 bouts of congestive heart failure, a blood infection and finally on July 4th, 2011 after two bouts in one day of CHF and a heart attack it was decided one month later I would need an LVAD and wait for a heart transplant. In the 5 months of waiting I went through two internal bleeds and 16 defibrillator shocks.

Through that whole period I faithfully exercised, and controlled my weight.

Now almost 11 years after the transplant I remain reasonably healthy. I have had numerous issues with skin cancer, one heart stent to complement the abdominal stent from 2005, and an endorectomy as smoking almost ruined my vascular system.

Medical technology, exercise, and controlling weight are my keys to success.

Truly feel blessed.

@zorbanite, Thank you for sharing your story about your journey to a heart transplant. Your determination and your inner strength to survive are an inspiration for anyone who is currently awaiting their own heart transplant.
The gift of life thru organ donation is a blessing!

This discussion was started almost 2 years ago and many members have shared remarkable stories of their transplant journeys.
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 you.
I know that it can be difficult for some to post a public story/account. (I was that shy kid in school who never felt comfortable sharing, and dreaded being called on to do so). I know that there are stories waiting to be told. I am available to help anyone to with their written story. I invite you to send me a PM and we can work through it together before you post it here.

I look forward to helping you to post 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.