My story started with an abnormal heart beat at a mobile heart testing center at my workplace in 2019, and ended with getting an emergency heart transplant on January 10, 2023, at The Christ Hospital.
Through those years, I was seen at Christ Hospital, The Mayo Clinic, and The Cleveland Clinic. My original diagnosis was pericarditis, which the doctors thought was caused by inflammation from my autoimmune disease, Sjogren’s Syndrome. Pericarditis is swelling and irritation of the thin, saclike Pericardium tissue surrounding the heart. Pericarditis often causes sharp chest pain when the irritated layers of the pericardium rub against each other. For three years, I was on a medication called Colchicine, which initially helped with the pain, but as I went through 2022, the medicine wasn’t working. That is when I went to the Cleveland Clinic’s Pericarditis Clinic to see if I was missing anything. Cleveland Clinic has the premier Pericarditis doctors and treatment in the country. At the end of the testing, the doctor suggested that I might not have pericarditis because none of the treatments were making me feel better. But – the one thing that all the hospitals told me was that I had a very “complicated” case, meaning no one was quite sure what was wrong (possibly due to the autoimmune disease – which is a real thing!) Cleveland Clinic took me off the Colchicine, but the pain and abnormal heartbeat were still happening.
This is when Christ re-examined my Cardiac MRI and discovered Mitral Annulus Disjunction, or (MAD). It is an abnormal atrial displacement of the mitral valve leaflet hinge point and has been associated with mitral valve prolapse (MVP) and sudden cardiac death. I grew up with MVP, but it never caused me any problems when I was younger. However, it was decided that I should have a valve repair for my MVP, and if the MAD was really bad, they would fix that as well.
So, I call myself a miracle because of my “accidental heart transplant” because a funny thing happened during my valve repair – my heart wouldn’t restart off bypass. For two weeks, the doctors of Christ Hospital tried to get my heart to restart:
1. Dr. Steve Rudick saved my life that day with ECMO (with canellas through my groin).
2. Then, 2 days later, Dr. Robert Dowling switched the canellas into my neck. I called it my Matrix moment. If any of you have seen The Matrix – I had what looked like garden hoses of blood coming out of my neck connected to machines keeping me alive. (I attached photos of this.
3. Finally, once we knew that my heart would not restart on its own, it was decided that an emergency transplant was the only way I would live. The Christ Hospital doctors, CVICU nurses, and staff tried hard – but I just had a clunker. When I went in on Dec. 28, 2022, for a valve repair, I didn’t think I would have a new heart by Jan. 10, 2023. I remember Dr. Thomas O’Brien was the first person to suggest we investigate a transplant. I was a bit in shock.
4. So, enter Dr. Robert Dowling. He is brilliant, and I am so grateful he is at The Christ Hospital. He did two heart transplants in 48 hours – he transplanted patient two 24 hours before he transplanted me. He has such a great personality and is so lovely, funny, and intelligent! I have worked with many Ph.Ds in manufacturing. Still, I have to say The Christ Hospital has the smartest staff I’ve ever met – from Dr. Dowling, Dr. Geetha Bhat, Joe Hughes, Ashleigh Schwartz, Amy Daily, Kimberly Goehring, and Shelly Deyhle to the ICU staff and nurses. I think every ICU nurse helped me during the 3 weeks I was in the CVICU.
Every single one of these medical professionals is brilliant! They were terrific at streamlining the process and getting me ready to save my life. I remember the moment that Dr. Bhat came into my ICU room. She was there for a purpose, but she had a calmness about her. After she left, my girlfriend and I looked at each other at the same time and said she would help save my life. Now, I don’t know my donor or even where my heart came from – but I must thank the donor family and the doctors at that hospital that made the donor’s family comfortable, which in the end helped Christ Hospital save my life. I am a miracle because I wasn’t on a list for a long time – this was an emergency. I went on the transplant list on a Thursday and got the transplant on a Tuesday. Thank God Christ had just gotten their certification for transplant that past October – as if I went any earlier for the valve repair – I might not be here.
Now, almost three years later, my heart is going strong. I volunteer, travel, and enjoy my life. I don’t identify myself as a heart transplant patient, unless I have to worry about a specific dietary concern. I had a colostomy this year, which has taken over as my health risk! I had diverticulitis that turned into a softball-sized mass in my lower colon, so I had a few inches of my colon removed. But, as I was thinking about what to write, I wanted to focus on celebrating the donors (and their families) and the medical professionals who have made the unselfish and remarkable choice to help facilitate the Gift of Life.
Your organization is filled with people who I appreciate and thank for their generosity and for facilitating hope to people like me, my husband, Ethan, and my children – Annabel and Ethan Jr.
Doreen Stanley lives in Cincinnati, Ohio.
