An Active 44-Year-Old Father Survives Giant Cell Myocarditis

In October of 2014 I was an active 44 year old married father of two living in the foothills of Western Maine. A Business Professional for a large corporation, I work from my home and travel in excess of 50% of the time all over the U.S. With extensive travel I often bring colds home with me and this time was no different. I began experiencing flu like symptoms over the weekend following a return business trip. By Thursday my symptoms worsened and I began to experience fatigue, nausea and an elevated temperature. Having never really been sick I continued to monitor the situation over the weekend and although my wife wanted me to go to the ER I opted to wait until Monday to make an appointment with my PCP as I wasnt going to the ER for the flu. On Monday morning I set up an appointment for 5pm with my PCP. I worked all day and sent my last email at 4:45 making appointments for the following day.

I went to my PCP as scheduled and this is where things took a turn for the worse. My PCP listened to my lungs and heart and I could tell from his face things were not good. He told me I needed to get to the ER ASAP as my heart was v-taching excessively. My wife drove me to the ER per my PCPs request. At the ER they too had the look of amazement and treated me as if I was having a heart attack. After several hours my heart was not responding to treatment and continued to worsen. On Monday evening they took me by Ambulance to a larger hospital in Maine which is routine in severe cases. By the time I arrived my situation was dire. I remained there for three days while they continued to run test after test to determine what was happening to me to no avail. On Tuesday evening I went into heart failure and was put on an ECMO machine. My wife, when sharing my medical history with doctors informed them that I have hemochromatosis (high Iron in my blood). I was diagnosed years ago and have never had to do anything other than monitor it. Because she shared with them this information, I am still here. Doctors ran a biopsy of my heart to see if it was storing iron and found by accident that I had Giant Cell Myocarditis. Although they diagnosed it, for which I am eternally grateful, they never have had a patient with this diagnosis before. On Thursday evening I was airlifted to Mass General Hospital.

I arrived at Mass General in cardiogenic shock. I suffered heart failure, respiratory failure and renal complications. I was revived and defibrillated multiple times but somehow managed to make it through. While on the ECMO they began treating me with a cocktail of immunosuppressive drugs and things started to improve. I was approved for a heart transplant and listed at the top. My family was warned that best case I would be on an LVAD until I could get a heart. Worst case a heart would not be available in time. My EF was 10%. Upon removal from the ECMO my heart came back. It took over on its own and has continued to improve. I was sedated for a few weeks after this and every time they tried to wake me up I would v-tach again and had to be defibrillated a few times as well. After two weeks they were able to bring me out of sedation and determine I was still in there as I had lost oxygen for several minutes on more than one occasion. I was dropped on the transplant list to inactive level 7 as my heart continued to improve. My kidneys, although damaged, came back as well. My first memory after my initial appointment with my PCP was three weeks later. I spent a few weeks recovering in the ICU and a few more in the step down unit at MGH where I also had an ICD installed. I had a few setbacks but continued to recover to the amazement of everyone, especially my Cardiac team who are well aware of what the body can withstand. I did have significant muscle atrophy and lost fifty pounds so going home was not an option.

Off to Rehab Hospital

In Mid-December I was sent to a rehab hospital and was projected to be there for three weeks. This seemed like an aggressive schedule but my goal was to exceed it. I spent four hours a day doing PT and OT and in two weeks went from walking with a walker to climbing flights of stairs. I was discharged in two weeks. On New Years Eve I came home still very weak but improving daily. I had in house PT/OT for two weeks followed by a month of outpatient PT. On March 9th I was given the official OK to return to work on a limited basis with restrictions and after 10 weeks was given the go ahead to return to work full time. I have been back two months now and am feeling like myself again. I have made a few business trips but, I am not back to full travel yet.

I continue to see my Cardiac dream team in Boston frequently and have had 3 echocardiograms since arriving home. My EF continues to hold at 54% and there is definitely some wall thickening of my heart largely due to the trauma it endured. I have had my ICD interrogated twice and have had no activity of any sort. My family, my great team of doctors and I continue to be baffled by the outcome. My Family and I are so very blessed and grateful for all the care I received and for every day we have been given. Although I am writing a survivors story, I do not think of myself as a survivor as of yet given the historical information I have read on GCM. I am for now a success story until such a time as a cure is found to ensure it is not coming back. All I can do is appreciate what I have and take an active role in spreading awareness of this incurable and deadly disease so that others can live to tell their stories.

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