Amelia Scholey - Recipient

I got diagnosed with Restrictive Cardiomyopathy just a week after having lost my brother from Hypertrophic Cardiomyopathy.

It started on the night of Friday 12 October 2001 when I walked home from a Ranger meeting with my mum and her partner at the time. When we got to our front door we couldn’t open it. My brother (Daniel) was laid behind it at 1st we just thought he was messing around as he was always playing jokes on us and then we released he wasn’t playing around. We phoned the emergency services and they came straight away. We went and sat with a neighbour while the paramedics worked on him and after what seemed like a lifetime of waiting we were told that my brother had died. He was 4 days away from his 16th birthday and life was just starting to look up for him.

At 14 I had lost my brother and my father and now faced the possibility of dieing myself

The following Monday we were told that Daniel had died from Hypertrophic Cardiomyopathy. My mum phoned the Dr’s immediately and made an appointment for me to be checked out as my dad had died when I was just a baby from what was said at the time to be a massive heart attack but now we reckon it was cardiomyopathy. We went to the appointment and they did an ECG which had a abnormality, so we were sent up to Scarborough hospital where some more tests were done. As they were not specialists in this area they didn’t diagnose me but they said it looked like I could have the same thing. They transferred us to Leeds General infirmary and we received the appointment for the following week.

We went to Leeds and went through more tests and were diagnosed that week with Restrictive Cardiomyopahty. At 14 I had lost my brother and my father and now faced the possibility of dieing myself. I was put on medication to try and control my heart but I felt myself getting worse. I lived every day to the full and went on a holiday of a lifetime to Australia.

We were later transferred to Great Ormond Street Children’s Hospital to the transplant team there for assessment. Yet again more tests were done. We were put on the transplant waiting list in June 2002. It was the waiting game then. We had 3 false calls before the transplant took place.

Finally in August 2002 the Heart transplant took place. Unfortunately the transplant had not been successful and when they put the heart in me it decided not to work (it wasn’t rejection). I got put on the ECMO machine which did the job of my heart. The doctors thought that after a rest the heart might start beating again but it didn’t. I got put on the emergency transplant list and 4 days after my 1st heart transplant I had another one. All of my family and friends where hoping and praying that this one would work. Thankfully it did work and I am here today to tell the tale.

The recovery process afterwards was very long and frustrating. With me being on the ECMO machine they had paralysed my body so I had to learn how to do everything again. I underwent daily physio some of which was horrible and some of which was fun. For my Mum and Gran who where there throughout all of it they got very good at lip reading at what I wanted or was trying to say, due to me having a tracheotomy in I couldn’t talk. After 3 months in hospital I was sent to Scarborough hospital and after a week in there I was allowed to go home.
Since my transplant I have been able to do several things I’d never thought I’d have the chance to do. Although there is not one day that goes by where I don’t think about my brother or the donors of my hearts. If it wasn’t for them I wouldn’t be here today and for that I will be eternally grateful.