I’m Emma, I’m 17 years old and I was diagnosed with Dilated Cardio Myopathy (DCM) when I was only 3 months old after having been admitted to hospital with a meningitis type rash. During the examination the Doctor said the heart murmur he could hear was so loud there was definitely a problem. From there I was transferred to Heulwen Ward which is the children’s cardiac ward. I had a number of different tests and eventually I was diagnosed with DCM. My parents were told that the doctors were unsure how things would progress – I could either stay pretty much the same, or get better or worse.
For quite a long time I stayed the same. On discharge I started my first course of medication which was Furosemide and Captopril suspension and I was seen in outpatients every three months. At varying times my parents were told that I wouldn’t see the year out; I wouldn’t make nursery, primary or comprehensive school and so on. When still a very small baby I had a PDA closed. I was in theatre for three hours because the duct they were trying to close was bigger than they first thought and the coil had shot up an artery. I ended up with three coils, and when I came back I had to have a blood transfusion! At five years old I was put on the active transplant list and the search for a heart went Europe Wide. I didn’t receive one, however my heart recovered enough for me to come off the transplant list. Gradually over the years I began taking more and more medication: Digoxin, Carvedilol, some other medicines as well as other cardiac medication I can’t remember. As a child I looked extremely white, and very ill.
At seven years of age the transplant team at Great Ormond Street Hospital reviewed me again. At that time I did not need a heart transplant but by the age of eleven years old I was re-listed, this time successfully. I got my call for a new heart and I was only in hospital for eighteen days post transplant. For the first year I was very well indeed, but after that I developed different problems and my energy levels gradually decreased.
Since my transplant I have completed comprehensive school and currently do an at home NCFE course. I have had a reveal device implanted to see if the blackouts I suffer from are caused by an irregular heartbeat. So far it has only showed sinus tachycardia (fast heart rate. Currently I have blackouts on a regular basis and am waiting to see a neurologist. They are going to be looking to see if I am having some form of fit. Although I’m no where near perfectly healthy I’m still here and wouldn’t be if it wasn’t for my donor.