My name is Claire. I'm 22 years old and I was diagnosed with Giant Cell Myocarditis a week before Christmas. This disease is pretty rare, and pretty fatal, so the chances of finding others with this disease is a long shot, but I thought I would try. I just am looking for others with GCM to maybe connect and discuss symptoms, treatment, meds, hopes/fears, transplants, etc. Feel free to ask me any questions - I am not shy.
Here's my story.
In November of 2013, I noticed that walking up the stairs in my home left me pretty winded. Being an athletic and fit young woman, I was a little disturbed, but shook it off temporarily as being too tired. The next day, the shortness of breath continued, and as I sat doing homework, I noticed my heart racing and I was beginning to sweat, as if I had been working out instead of sitting. I had just started a new birth control so I immediately called my doctor, concerned about blood clots. The doctor, also sharing my suspicion, told me to go to urgent care to get checked out. Once at the urgent care clinic, I had a chest x-ray, which showed fluid in the lungs and a swollen heart, and an EKG which was abnormal. But I was not having any chestpain, was only mildly sweaty and short of breath, the doctor wasn't quite sure what was wrong with me. Wanting to be on the safe side, he sent me to the Emergency Room. Once at the hospital, the doctors there were amazed that I was conscious and talking - according to the EKG they ran on me, I was having a heart attack. Or at least my heart was having a heart attack and the rest of my body was functioning normally. I didn't really feel anything except for a few pounding heart beats every once and a while. After an echocardiogram, my EF was calculated at about 35%. After a three day stay in the hospital, I was released on a cocktail of anti-inflammatories, beta-blockers, and ace-inhibitors. However, I did not tolerate the beta-blockers, for they dropped my blood pressure so low I couldn't even get out of bed. I returned to work and school, becoming much more fatigued by simple tasks, but still able to maintain a pretty normal level of functioning. About two weeks after my hospital release, a repeat echo was done and my EF had fallen to about 30%. A few days later, almost exactly a month after being released from the hospital, I again had to go to the emergency room, after feeling too dizzy to get up to use the bathroom, and maintaining a pulse of 120 bpm while reclined for almost 4 hours. I was admitted into the hospital for several days where I experienced some V-Tach. The doctors knew I was in heart failure but couldn't figure out why. Eventually, my cardiologist made the decision to send me to Keck Medical of USC's cardiovascular ICU, where they would be better able to run test on my unusual situation. After being transferred to Keck, I stayed there for 17 days, 15 of which were in the ICU. Whilst there, I had a heart biopsy, which finally led to the diagnosis of Giant Cell Myocarditis, and autoimmune disease that attacks the heart, as if it were a transplanted heart. i was presented with a plan of action: autoimmune suppressants and anti-rejection drugs would be tried first, and if they failed to improve my heart function, a transplant would be necessary. So I was started on Anti-Thymocite Globulin, among several other drugs. After a week of the ATG treatment, I appeared to be responding well. However, an echo revealed that I had a clot in each of my venticles so I was started on a course of blood thinners to clear them. Eventually, my pulse and blood pressure returned to a level at which I was able o walk around without dizziness, and I was moved out of the ICU in time for Christmas. The day after Christmas I was allowed to go home, but I have to wear a Life Vest Defibrillator at all times as protection against irregular heartbeats or a sudden stopping of the heart. I also have to wear a mask that covers the mouth and nose when I am around a lot of people, to protect myself from germs. This is because the anti-rejection and immunosuppressant medications lower my immune system significantly, and getting something like the flu could be much more dangerous for me. I had an MRI repeated a week ago, which revealed that the clots in my heart are gone and that my EF has improved back to 35%. However, there is still major scarring in my heart tissue from the attacking agents in my body. Now I must wait to see if the function returns to those scarred areas - if it does, then I probably won't need a heart transplant. If it doesn't, then that possibility becomes very real.
That is the basics of the story and I am open to answering any questions to those looking for answers. Of course there is so much more detail and drama that ensued in the hospital - side effects to drugs and what not, but overall, I feel like my condition is improving. Or at least it seems that way, because I am able to function almost autonomously - except I am not allowed to drive myself for a month after discharge from the hospital, and I am not allowed to go back to work for at least six months.
I hope to hear another person's GCM story - it would comfort me greatly to hear from others who are living with or dealing with the possibility of heart transplant.