My story started eight years ago. One day while my wife, Louise, and two of my daughters were out on our boat swimming. My wife and one of my daughters started to drift away in the current, so I jumped in the water with a rope and swam out to them to pull them back to the boat. Once it was over I could not catch my breath and struggled to breathe. Louise is a nurse and she was concerned, but my struggles passed for the time being.
John with a catch
The next week she pushed me to go to a pulmonologist. He did some testing and said I had asthma. Being 61-years-old I felt that this was odd. We went to a cardiologist just to make sure my heart was good, and he did an echo and said all was well.
Three months later, I was coughing up blood—which brought me to the hospital for a CT scan with contrast. I was admitted with pneumonia. The hospital noted my heart was enlarged on the CT scan and called in the on-call cardiologist. He ordered an echo and said, “I’m looking at a 61 year old man with the heart of an 85-year-old.” He ordered a nuclear MRI, which was done the following week after I was discharged. Once he reviewed the MRI, he explained that I had a Cardiac Amyloidosis and referred me to an amyloid specialist in NYC.
After a blood test the new doctor confirmed that I have Cardiac Amyloidosis. She shared that there are three types of Amyloidosis – but she is not sure which type I have. I asked her what treatment was available and that’s when she said there is no treatment – maybe a heart transplant at some time. Louise and I just stood there and cried. Our world just fell apart.
She referred me to another doctor who specialized in Amyloidosis and after having a biopsy, he confirmed I had Wild Type Cardiac Amyloidosis, which affects 1 in 300,000 people. We spoke of a transplant sometime down the road and started me on Dilflunisal, and water pills. The only medication around that could possibly help, Tafamidis, was still in the clinical trial stages and cost over $250,000 a year. We talked of having a heart transplant sometime down the line, but we never knew when it would happen.
Over time I realized that the meds I was taking were no longer working, and in August 0f 2017 I was listed on the transplant list. In November of 2017 I was having trouble breathing so I called my doctor. He increased my medication and told me that if it didn’t help I would need to come down to the hospital in the morning to be checked out.
The next morning brought no change. At the hospital they did a biopsy on my heart and it was determined I was in heart failure. I came out of the biopsy with the familiar swam tubes in my neck, and they told me I was going to be here for a while. I spent the next seven weeks waiting for a donor.
Like many others who wait, we celebrated Thanksgiving, Christmas and New Year’s in the hospital. On January 2, 2018 I finally heard the words, “We have a heart for you.” I just broke down and cried. I called my wife and daughters and the process began.
Although I still have Cardiac Amyloidosis, I’m now on a medication called Vyndamax which slows down the progression by 30 percent. I’m happy to say we just celebrated my 5th year heartiversary on January 2, 2023, and I’m doing well. I visit my donor’s final resting place each year on his birthday and will continue to do so as long as I can.
Organ donation is a special gift anyone can do, and it’s a way of leaving a legacy of your name. It is the Most Precious Gift Anyone Can Give.
John’s daughters and grandchildren
April is National Donate Life Month
This month is a time to celebrate the generosity of those who have saved lives by becoming organ, eye and tissue donors, and to encourage more people to register! Learn more about UNOS’ lifesaving work and ways you can get involved.
