Name: Don Mitchell
Age at Diagnosis: 39
Procedures: heart transplant; kidney transplant
My heart disease started at the very young age of 39. I was very active physically, worked out religiously.
I was in peak condition when I ran the Boston Marathon in 1990. So you can imagine how much of a shock it was to find out I was having a heart attack on Easter Sunday in 1995.
After doctors performed an angioplasty, I recovered quite well and was able to start exercising again. A couple of years later, my wife and I had our second child. Life was good. We were working a lot with two small children. However, as time went on, I started to develop significant problems with cholesterol-lowering medications, which eventually led to an experimental procedure called “LDL plasma AL fieriness”. (A procedure very similar to kidney dialysis in that a person is hooked up to a machine that cleans his/her blood for several hours per treatment.) I had this done every two weeks for eight years.
Other than that, my life was pretty routine… until November 2002. After an echocardiogram, I learned I needed bypass surgery. Three months later, in January 2003, I had quadruple bypass surgery. My wife was waiting in the waiting room. The doctor came out said everything went well and he was going to finish up and come out and talk to her in 15 minutes. My poor wife waited and waited. Finally, an hour later, he came out. (Apparently I wasn’t cooperating—my blood pressure had dropped off to nothing. The doctors had to chemically bring me back.)
I recovered fairly well from surgery with a couple of bumps in the road with atrial fibrillation. Then, in November 2004, I was told the mitral valve in my heart needed to be surgically repaired. I was in shock—one open-heart surgery was enough (or so I thought). But not in my case. In January 2005, I had my second open-heart surgery. I elected to have minimally invasive mitral valve repair. After the surgery, heart failure was setting in and I needed a defibrillator implanted.
Life went on.
Living with heart failure, I had several cardiac conversions and then I found out my defibrillator had on recall. Fortunately, mine worked because on September 20, 2009—while sprucing up the house for my wife’s 50th birthday party—I passed out from a lethal heart arrhythmia called ventricular tachycardia. My defibrillator had saved my life. But thus started a very difficult road with heart failure with many visits to the cath lab for atrial fibrillation, a vertical ablation surgery and an atrial ablation surgery.
Living with Severe Heart Failure
In 2010, heart failure was getting very difficult. In January 2011, a third open-heart surgery was recommended. This time, I needed a mitral valve replacement and a tricuspid valve surgery repair. On April 1 (April Fool’s Day), I had my third open-heart surgery—in the middle of a blizzard (doesn’t it figure). I should have known that was a bad omen because nothing went right after the surgery. My heart failure was spiraling out of control; the cardiac ward was a revolving door for me. I was in and out of the hospital for weeks and months at a time. In a last ditch effort, I went to Miami to attempt to get involved in a stem cell research program where they rejuvenate heart muscle. Upon arrival I was immediately told I should return home and I had six months to live.
Needless to say, that was unsettling to hear.
After my return home, in October 2011, I started my journey with Tufts Medical Center in Boston. That is when I met Director of the Heart Failure and Cardiac Transplantation Center Dr. David DeNofrio. My first visit was, again, very unsettling when he asked if anyone had talked to me about hospice yet. It was at that time a work-up for a transplant was started. Initially it didn’t go very well. I was turned down for a transplant because I had a spot on my lung. I was sent home not knowing if I would be transplanted or die from heart and kidney failure. Fortunately, a month later, a chest x-ray was redone, the spot had cleared and I was listed for transplant.
Extended Hospital Stay… and The Gift Of Life
On January 25, 2012, I was admitted to Tufts Medical Center where I stayed until December of that year. My ten and a half month stay was the most difficult thing I have ever endured. By the time I was admitted, I not only had life-threatening heart failure but my kidneys were failing as a result of my heart. Upon admittance, I had a “swan” put in my neck. (This a central line attached directly to my heart to measure pressures in the heart and can also be used as an IV for medications.) The swan was very difficult to live with as it prevented me from moving more than five feet in any direction and it would come out every 10-14 days to switch sides in my neck (that gave me freedom for 18 hours to walk around and take a shower, which was like heaven).
This was my life. Not knowing if I would make it to transplant or not.
Then, in Summer 2012, I was told I was getting my transplants (heart and kidney). I was in the operating room, anesthesia was administered and… at the last minute… the transplant was called off as a result of complications on the donor’s side. When I woke up I was still intubated, looked at the clock, and thought to myself, “Four hours? …That was quick.” I felt great, all things considered. Only to find out the transplants were called off.
It was a huge disappointment. …My journey continued.
In October 2012, I got called again. This time, everything was canceled before things even got started. Hope quickly faded. It had been a full year since I was given six months to live. I wasn’t sure how much more I could take. I was ready to give up.
Then, on November 15, 2012 I was called again. This was going to happen—I could feel it. Three surgical teams were assembled—one to retrieve the organs, one for the heart transplant, and one for the kidney transplant. The surgery took sixteen hours and was successful. Two weeks later, I discharged.
I have been so blessed that a little over four years later I have not spent a full day in the hospital since I left. This miraculous turn of events is truly a blessing. And it is a direct result of all the health care professionals at Tufts Medical Center who gave me, and continue to give me, the best possible care.
Since my transplants, I have been very fortunate and a sense of normalcy has returned.
I truly have been given The Gift Of Life.