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.

Click to access the login or register cheese
Contact Us

Contact Us

(281) 713-2962
800 Rockmead Drive, Suite 155
Kingwood, TX 77339
[email protected]

Social Media


Help Us End Suffering and Sudden Death from Myocarditis!

Donate to the Myocarditis Foundation Today!