Sarah’s Transplant Story22 February 2020
In 1990 they discovered that I also had a leaking valve in my heart. I was sent to Queen Elizabeth Hospital in Birmingham to be assessed for transplant. I was on the urgent list for 7 weeks. On 30th April 2018 they found me a heart. This is my story.
It all began in 1989, when I was 14 years old. I had a rare type of kidney cancer called Wilm’s tumor. After having my right kidney removed I had to have chemotherapy for one year. It made me feel really ill and the side effects were intolerable. I was sick frequently and had terrible stomach cramps. I also had nose bleeds and awful mouth ulcers. Then in 1990 I was diagnosed with dilated cardiomyopathy and referred to Dr. Yousef at University Hospital of Wales, Cardiff.
After a lot of tests they discovered that I had a leaking valve in my heart. I had a mitral valve repair done in 2006. But my breathing got worse and I had atrial fibrillation. My cardiologist gave me an implantable cardioverter defibrillator because he thought I was at risk of sudden death. At first my ICD worked brilliantly and I could breath and I had a lot more energy, but then I got a pacemaker infection. I had to have the whole thing taken out, including the lead. I was then given antibiotics intravenously for 5 weeks before having an operation to put another ICD in.
I was genuinely feeling okay for a bit then gradually things got worse and I was sent to Queen Elizabeth Hospital in Birmingham to be assessed for transplant. By this time I was very scared and very worried about it all. I can remember thinking that I wasn’t sick enough for a transplant. I had all the tests and it turned out I was eligible for transplant. At first I wasn’t ready but my breathing got worse and I was hospitalised more frequently with fluid overload. Dr Yousef told me I had to stay in Cardiff until there was a bed in Birmingham.
I was allowed home during the day but had to go back every evening to sleep. My breathing was getting worse and I was so breathless that I struggled to shower and get dressed. I couldn’t walk more than a few yards without gasping for breath. Also I found it hard to sleep because I couldn’t lie flat in bed due to fluid in my lungs. After 2 weeks of this they found me a bed and I went to Birmingham by ambulance. Dr Lim, my cardiologist, took me to theatre and put a central line in my neck in which I was to have inotrobes and that did help, I could breath better.
I was on the urgent list for 7 weeks. It was hard being so far away from home. I didn’t get many visitors and I missed my family and fiance, and especially my dog Jack. He was allowed to come and visit which really cheered me up. On 30th April 2018 they found me a heart and I was prepared for surgery. The operation took 24 hours and I was in an induced coma for 2 weeks after. My chest was left open too. I had a lot of complications during my transplant and I had a stroke which has left me with severely impaired vision. I also had kidney failure and was on dialysis for a while until my kidney recovered. I couldn’t move my arms or legs and I had to learn to walk again. It was a living nightmare! I was in hospital for 6 months altogether.
However, today nearly two years later, I am a completely different woman compared to before the transplant. I can walk for miles and I don’t get breathless or tired. Now I run up hills and I have a lot more energy. Even my dog, Jack, struggles to keep up with me 🙂 I feel amazing and I thank God and my wonderful donor every day for for giving me this incredible gift and a second chance at life.
– Sarah Davies