Heart transplant after cardiomyopathy: Gilbert's story

Gilbert Wheeler, 59, received a heart transplant in 2016, 25 years after first being diagnosed with hypertrophic cardiomyopathy. He shares his story. 

Gilbert Wheeler

Gilbert Wheeler, 59, was diagnosed with hypertrophic cardiomyopathy in his early 30s. He started to feel unwell in 1990, and 25 years of hospital visits followed.

He married Lynn, a nurse he met during his first hospital stay, became a father of two, and managed to work as a driver and ground crewman until 2007, when his heart function deteriorated further.

Eventually he was put on the waiting list for a transplant, which he received in December 2016. 

A life-changing transplant

“After the transplant it felt like a heavy weight I had been carrying since 1990 had suddenly been lifted off of my chest. It takes time to recover, but it soon became apparent how much the transplant had changed my life. Two days after transplant, I did the stairs in hospital, and I got on the exercise bike and I cycled for 10 minutes. I did feel exhausted afterwards, but I wanted to do it because, at last, I could.

After the transplant it felt like a heavy weight had suddenly been lifted off of my chest

“I started on about 16 tablets a day and it’s reduced down to 10. There are side effects – I have developed , which is steroid-induced, one of the immune suppressants gives me blinding headaches from time to time, and I have shaking hands, though that is gradually getting better. 

“Because my immune system is suppressed, I have to avoid certain foods, like blue cheese and runny eggs, to reduce the risk of infection from things like listeria and salmonella. You get a bit bloated with the steroids and other drugs – I am working to bring my weight down. 

Strength and gratitude

“I have been through a lot, but the good thing is that my children and my brothers remain free from any signs of cardiomyopathy. My wife and my children have been my rock when times have been hard and have given me the strength to carry on. 

“I am so thankful to all the staff and surgeons at Papworth Hospital who gave me the chance to have another life, and to the family who donated the heart of their own loved one to help me. This can never be an easy decision, but it is a very special gift and one that I will always be reminded of when I look at my surgery scar.”

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