My name is Maria. I live in the U.K.
I was diagnosed with Myocarditis when I was 11 years old. Here is my story…
One day I started feeling really ill. I wasn’t able to keep any food in and I was very weak, I was having difficulty breathing, my heart was racing, and my whole body was aching.
I was lying in bed for couple of days thinking it’s just a virus and it would pass, but it wasn’t going away. My mom decided to take me to the hospital. I struggled badly while getting there – I was so weak I could barely even walk.
I had a lot of tests done. My internal organs were double in size and painful to touch. The doctors thought that I had been infected by a virus. My skin started to turn yellow, and all my blood results were very abnormal. None of the doctors knew what was wrong with me. They finally did a chest Xray which showed the problem.
My heart was double the size it should have been. I was diagnosed with Dilated Cardiomyopathy, which is a large floppy heart that doesn’t pump well.
I was sent via ambulance immediately to the cardiac hospital. Doctors told my mom that they are not sure if I would survive the journey, as it was a 1-hour drive. My blood pressure was 40/20, and they couldn’t measure my pulse – it was so low.
In the hospital I was on high doses of many different medications, and as a result I had multiple side effects. I was in the hospital on the heart monitors for months. The only visitor I was allowed was my mom.
Once I was stable, I was transferred to the largest cardiac hospital in the country – 10 hours away from my home. I was hospitalised for a few more months and treated for years. I had multiple cardiac biopsies done, all showing myocarditis.
They did not know how I got it, but it damaged about 15% of my heart. They managed to control it with medications, but the damage to my heart was already done.
I survived and have been on strong cardiac medications for years.
I am now 31 years old, with a severely damaged heart, dilated cardiomyopathy, heart failure and have a implanted cardiac defibrillator (ICD) in my chest. The ICD helps to protect me from Ventricular Tachycardia, Ventricular Fibrillation, and ultimately Cardiac Arrest. I can say that it was the best decision the doctors could have made. I suffered from a lot of symptomatic, potentially lethal cardiac arrhythmias, and now I feel much safer with it being there as backup. It also allows me to keep my medication dosage high and my heart stable.
Even though it is very difficult to diagnose myocarditis and pericarditis due to the nonspecific symptoms, they can be treated, and people can survive them.
Please if you are not getting better after a day or so of feeling ill, or you know that this is not how you normally feel when fighting a virus, go get it checked out by a doctor. There is more known now about myocarditis than they knew 20 years ago. Ask them, “Could this be myocarditis?”
I always say, do not give up and keep fighting as it’s worth it. I am a stronger person because of this.