As we make our way through the holiday season, we’re reminded to reflect on our life in the last year and express gratitude for what we have. Many families are thankful for being together and healthy. Each year, more than 39,000 people were thankful for their organ donors. Each Thanksgiving, a day dedicated to giving thanks, Myocarditis Foundation President, Joe Rumore, celebrates the anniversary of his life-saving heart transplant after being diagnosed with myocarditis.
What was your experience before hospitalization?
In my case, I never had a heart attack or sudden event needing immediate hospitalization. Over a period of time (in my case 8 years) as the heart was weakening, I would go in and out of the hospital to have the excess fluid drained from my body. Because of heart failure, the body builds up fluid since the organ is not functioning properly. In my case, I continued to work, and fortunately for me I had my wife, Gen, who was a cardiac nurse. We had a good relationship with our doctors and instead of going into the hospital, I would stay home for a day or two and Gen would administer the needed treatments to drain the excess fluid. Once stable, I would work again.
I lost weight, energy, and felt the life drain from my body. I was angry, and found myself looking at others that were obviously in poor physical condition, and saying “why me?” To be clear, I was in and out of the hospital a lot. Most people noticed as I worked that the strength of my voice was weakening. It became very faint and cracked often. Once I stopped working, I tried to maintain a level of activity but most times I had to stop because of shortness of breath or exhaustion. Leading up to the transplant, I had to be revived and rushed to the hospital. At that point, I was being supported with intravenous medication to help keep my heart pumping stronger, but that only lasted about three weeks before it also started to fail.
What was it like after getting the call that they had found a donor?
For a transplant, you often get a call late at night and have to be in the hospital within two hours. They do the transplants at night when the Operating Rooms and staff are free since they are emergency procedures and not scheduled. Once you arrive at the hospital, you are immediately prepped for surgery. They have 4 hours to transplant the heart once the donor passes. I remember lying on the operating room table with several thoughts;
– I had several times reflected on my life to take account of my contributions to my family and again found I was satisfied with how I lead it. I had done everything I could to leave them in the best position I could without me.
– I thought of my new hero who gave me hope. Keith Richards of the Rolling Stones. I used him as a model. If he was able to survive with all of the abuse his body took, I could do it!
– I also thought of the song, “Only the Good Die Young” (Billy Joel reference) and I wasn’t that good!
– I knew if I opened my eyes after surgery, I would be back in the game.
– I met the doctor doing the surgery and off to sleep I went.
I was in the hospital for 10 days, starting to walk on the second day after coming out of the anesthetic. I went home for one day and returned for a biopsy. I had developed fluid around my heart and had to have it drained and was hospitalized for another 10 days. There is so much that went on in the hospital during those 20 days it’s almost impossible to do it justice in a few lines. The person who I shared a room with, who also had a heart transplant and was being prepared to go home, coded and died the night before he was scheduled for discharge. His body had rejected his heart. I had good days and bad days but for the most part, I stayed focused on the fact that I had another chance at life and the hospital team was doing all of the things needed to pull me through those acute care days.
The first year after a transplant is very sensitive as your body is adjusting to the anti-rejection drugs. You are very susceptible to infection. I did have a bout with the Cytomegalovirus (CMV) and required 6 weeks of intravenous medication to fight it and fortunately made it through. You are monitored closely and frequently especially during that first year, as an outpatient for biopsies and other tests.
How do you feel now?
I have been able to lead a fairly normal lifestyle while always being vigilant since my body was never fully “fixed”. I traded one medical issue that a person could not live with, for a whole new set of medical issues. Those issues, which still need to be closely monitored, have afforded me a continued life here with my family. I never returned to the work and career I had. I did choose to use my second life to give back. I have used my story and business acumen to lead a start-up nonprofit for the disease that took my heart — Myocarditis.
What would you say to the donor who gave you this second chance at life?
This is a very emotional question. I carry her (my new heart was from a female donor) everywhere I go. I’m so very thankful that her family gave me such an opportunity. It would be just as hard if I spoke with her family. You must understand in this situation, they have just suffered a huge loss and yet, on my side, there is huge joy. Those two momentous events are due to the tragedy of someone losing their life to give life to another.
This holiday season, we’re grateful to every organ donor and their family for giving others a second chance at life. If you would like to become an organ donor, consider registering today.