"We asked the cardiologist how our son's heart got this way, and he said that it was called myocarditis, most likely viral in nature. That was the day that our lives would change forever."

Christian's story

This is the story about our son, Christian. He is our first child, and my husband and I were so excited to have been blessed with a beautiful son. Christian was born with bradycardia, a low resting heart rate. He was transferred to the NICU in the hospital where he could be closely monitored. After many tests and genetic counseling, they could not determine a reason for his low heart rate. After 3 days, his heart rate increased, and he was released from the hospital. We followed up with a local cardiologist who confirmed that Christian had a healthy heart. His heart rate continued to improve, and he was growing beautifully, meeting all of his developmental milestones. At 8 months, the cardiologist again gave him a clean bill of health and told us that we did not have to come back for 3 years. The bradycardia remained unexplained, but was not unusual, and he was doing well. All of the echocardiograms and EKG tests showed a baby with a healthy heart. We were so happy, we could finally relax. The never-ending worry was finally gone. We loved taking him places. He loved the park and the beach. We were really enjoying being parents.

At 18 months, Christian had an illness in which he had a high fever, cough and difficulty breathing. We took him to the emergency room at our local hospital, because we thought his breathing seemed labored. They told us that it was just an upper respiratory infection and his lungs were clear, and to follow up with his pediatrician the next day. The hospital did not perform a chest x-ray at this visit, because a chest x-ray is not considered a part of the standard testing procedure. We followed up with the pediatrician the next day, and the pediatrician agreed that it was just an upper airway illness and gave him antibiotics. The fever and coughing went away, but Christian was never the same. He was irritable, he couldn't sleep, and cried a lot more than before.

Unknowingly, we believe that was the turning point in Christian's life. For the next six months, things seemed to be going okay. We thought that maybe there was still a breathing "difference" with Christian, but as first time parents, we couldn't be sure and every time we brought him to the pediatrician, he was given a clean bill of health.

Christian had is 2 year old "well" visit at the pediatrician, he was thoroughly examined and, again, given a clean bill of health. The next week, Christian caught a cold. He was miserable. He was crying uncontrollably, and began to have difficulty breathing again. We took him back to the pediatrician. The pediatrician told us that there was a slight wheeze in his lungs and prescribed albuterol treatments by using a nebulizer. After two days of treatments, Christian was still not breathing right. We took him back to the pediatrician. At this time, the pediatrican ordered a chest x-ray. We took him that afternoon for the x-ray. After the x-ray was preformed, the radiologist asked us to wait while they phoned the pediatrician. They told us that we were not to go home, but directly back to the pediatrician's office. We were so nervous and scared!

The pediatrician immediately sent us to a local cardiologist and told us that Christian's heart was extremely enlarged. We went to the cardiologist's office, and they did a thorough examination, including an echocardiogram and EKG. The cardiologist told us that we had to take Christian immediately to the local Children's Hospital, where more tests could be done, and that his heart was extremely enlarged, barely functioning, and that he was in congestive heart failure (CHF). We asked the cardiologist how his heart got this way, and he said that it was called myocarditis, most likely viral in nature, since Christian's heart looked fine when he was 8 months old.

That was the day that our lives would change forever. Christian was treated with medications for CHF in an attempt to delay the inevitable need for a heart transplant. Our hope was that it could be delayed as long as possible. For the first six months, Christian's heart function stabilized and we were very hopeful that the medication was working. After those first few months however, Christian's heart function started to steadily deteriorate and his quality of life became very poor. We could only watch as our playful and happy son became increasingly weak and tired. Unable to sleep, he was awake most of the night, tossing and turning and crying. We had to keep him isolated from other children, as with every illness, his health seemed to deteriorate even more. A simple cold would take him about three weeks to get over. With each passing day it became evident that the medication was not working, and that he would need a heart transplant. We learned that the myocarditis was just not caught early enough and his heart had an excessive amount of scar tissue, making it impossible for it to pump properly.

Christian received his new heart when he was 3 ½ years old, and is doing very well. He has just turned 7 and is doing everything a typical 7 year old boy can do. He still enjoys the park and the beach, only now he can run all over and play for long periods of time without becoming exhausted and completely out of breath! It was and continues to be a very long journey. A transplant is not a cure, as with it comes other issues. Christian is enjoying school and playing with other kids his own age. We are grateful that he currently has a high quality of life, and pray that it continues that way for many, many years to come.

Myocarditis is a disease that needs to be diagnosed and treated more accurately and more quickly.

David's story

In April of 2005, I was a fit and healthy 49 year old father of five and grandfather of one and taught Mathematics at a boys College in New Zealand. As with a lot of Kiwi’s I enjoyed tinkering in the garage with my vintage Ford and ‘inventing’ gadgets, usually toys, and including a range of human powered vehicles. I was training for the local half-marathon in June and would regularly complete my usual 1 hour 40 run.

The sudden death by heart attack of my sister-in-law at Easter of 2005 gave me motivation to loose a bit of extra weight, so in addition to a solid fitness program, a serious dieting regime was followed. Pretty much all the good eating habits needed had been put in place already – drinking hot water, limiting fats and sugars and salt. It was a matter of winding up the efforts.

At the end of April within the space of one week of feeling less energetic, stomach pains and feverish sweats at night, I was admitted to hospital, a walking dead man with an ejection fraction of 19%

On the first day in hospital after it was confirmed that it was not a coronary attack but myocarditis probably caused by a virus attack on the heart muscles, things were going down fast. I was put on a Heart Balloon Pump for five days straight and over the next while, some improvements seemed to happen but the hot feverish bouts continued.

The family basically had ‘camped’ at the Coronary Care Unit, sleeping variously on chairs and on the floor. Lots of fast food was brought in to keep things going and turns were taken around the bed and there were times when my breathing was so intermittent as to cause serious alarm. Also at some stage there was a clot in the heart but in comparison with other things going on it didn’t get much attention and eventually dissolved itself. I was not always aware of all that was going on but my wife and family were totally devoted and dedicated to being there and doing whatever they could. There was an ever increasing circle of friends and community supporting the family with food and prayers.

By mid-May, after a second round of the Balloon Pump, it and various other lines were removed. Medical opinion indicated that there were ‘hours to live’.

So many people had been praying and one such prayer read to me was Psalm of David 118, vs 17: I shall not die, but live and declare the works of the Lord.

My kidneys had not been functioning for 4 days when, inexplicably, some kidney function returned. There was still a great deal of concern however, as the blood samples showed severe blood poisoning and that night my heart started beating at over 200 beats per minute. Even after surviving such a night, there was huge concern that I would not survive the rounds of shock treatment needed to get my heart back into the correct rhythm. Finally, massive doses of Amiodarone settled my heart and the long slow process of recovery started.

A Pace-maker/Defibrillator was fitted before I left hospital in early July and I was on steroids, immunosuppressants and other assorted medications There were a couple of visits back to hospital, but I had the absolute love of a wife who would not let go, and the total commitment of family, friends, community and hospital staff. By the start of 2006, I had an ejection fraction of 28% and was able to resume teaching part-time. Diagnosis by surgeons indicate that it was a case of Giant Cell Myocarditis which means that my non heart-transplant survival is, as many have suggested – miraculous.

Lisa's story

I was a 37 year old, healthy mother with a husband and 2 young children, or so I thought. My husband and I were in the middle of moving out of our home and into a condo because we couldn't find another home as fast as we needed to. It was a stressful time, and to save money, we decided to do much of the moving ourselves. A few weeks after moving, I got sick with a cold, about a week later I got another cold, worse this time. I didn't think too much of it but when it became so difficult to breath that I couldn't lay down, I became concerned. Twice I took myself to the emergency room, alone late at night, not wanting to wake anyone. I was sent home with Tylenol, unfortunately I was in last stage heart failure. Looking back, I realize that I have had many times in my life when I have been very sick. Starting in very early childhood, even my birth was traumatic. I had severe allergies, pneumonia, mumps, chicken pox, severe ear infections, and my tonsils out at 2 years old. My mother used to joke about the pediatrician calling on his days off. At age 23 I had a partial molar pregnancy, which is a very rare condition with a viable fetus, however the placenta is cancerous the cells keep multiplying and multiplying. At this time I was fighting for my life for 22 long weeks. The pregnancy ended in the hospital operating room table where my heart stopped. This was my first near death experience. After this time I was no longer afraid of death, because I knew without a doubt that the soul leaves the body upon death and is very much alive. This was very important for what was to come later with GCM. But is was also a precursor for realizing that my immune system was extremely aggressive to anything it perceived as foreign.

My experience with GCM was beyond description other than to say it was terrifying, and I never thought I would get out of the hospital alive. I firmly believe if it weren't for the support of my family and the non-stop prayer from many people I have never even met, I wouldn't have left that hospital. When I look back and realize that it all happened within an 8-week period, it seems impossible. How can a healthy person get that sick so suddenly? How could I have gone into the hospital with what I thought was the flu and leave with a new heart? Giant Cell for me wasn't only about the heart. I nearly had a heart/lung transplant. This disease not only attacked my heart and lungs but all of the muscles in my body. After the new heart was in place I had to learn how to do everything again including breathing, walking, swallowing and even talking took me months because my vocal cords were very swollen from life support. When I left the hospital Christmas Eve, in a wheelchair. I was a totally different person and I wasn't feeling lucky to be alive at all. I was feeling terrified, traumatized and wondering WHY?

Five years later, I have many ideas as to why. I have been to all sorts of healers, from holistic doctors, to energy healers, to meditation groups. I have learned more about myself, as a person and my body than I ever dreamed I could know. I have learned that there are reasons for sicknesses like this one based on biology, as well as mental and emotional issues and beliefs. I take my medicine faithfully every day, and I view my body as my partner. I listen to its needs and take care of myself in every way I know how. And I am very thankful for my doctors and modern medicine for the chance to live and help other people who are facing adversity. I don't identify myself with my illness, I see myself as the picture of vibrant health. I wouldn't ever want to go through something like GCM again, but I do live my life differently now, in gratitude.