Tuesday, 14 May 2013

My Story...

The 2020 Heart Challenge is a personal challenge to do 20 new activities by August 2013 that I could not have done before my heart transplant operation in August 1993 at the Freeman Hospital in Newcastle Upon-Tyne.   

Birth to 21...
I was born with a complex congenital heart disease which included five separate defects; the biggest was transposition of the main arteries. This meant that I effectively had two circulation systems within my body, some really well oxygenated blood going from my lungs to my heart and back to my lungs again and some very poorly oxygenated blood going round the rest of my body. The life saving defect was the hole between the two parts of my heart that allowed the blood between the two circulation systems to mix, enabling a small amount of oxygen to circulate around my body.

Mum says that when I was born the doctors told her that there was nothing they could do and I would die, so she took me home.  I didn't die but was a very poorly blue baby who fed badly, put on little weight, slept intermittently and cried a lot.  After a few months I started to have regular fits and without any medical intervention, would have died.  However at seven months old, I had my first operation; this was a shunt, which allowed a greater amount of oxygenated blood to circulate around my body.

This operation saved my life but did not fix the underlying condition and my heart still had to work hard to to supply my body with the oxygen it needed for every day life. This meant that my heart beat fast and became enlarged; I took beta blockers to slow it down, however severe chest pain and dizziness were a daily part of my life.

As a child I was curtailed in the activities that I could undertake; I couldn't walk very far, certainly not up the hills of the Dales where I lived; couldn't climb stairs without being out of breath; couldn't learn to swim; couldn't ride a bike; was unable to take part in PE at school; couldn't join school field trips. The list goes on....   Compliance not exactly being my middle name, I refused to use the wheelchair that might have made life easier for my family or wear the medic alert bracelet that marked me out as different.

Despite the limitations in my daily activities, my health was otherwise good and I attended the local Primary School, went on to secondary school where I studied my GCSEs and A-levels, and then left to go to University in Newcastle-Upon-Tyne, living independently in student halls of residents. Not bad for someone who would be likely to have learning difficulties and probably never learn to walk.

Consultants at the Freeman first raised the possibility of a heart transplant when I was 11 years old as my health had begun to deteriorate.  This was in the early days of transplantation where there were a lot more unknowns and my mum felt that she couldn't make this decision for me, it was too big. Fortunately a change of medication stabilised my health and the subject wasn't raised again until I was studying for my A-levels. At that time I didn't want to go ahead with a transplant, as I felt that I was managing OK. 

Living independently as a student took its toll on me and at the end of 1992 I talked to my doctors again about the possibility of a transplant, underwent the transplant assessment and was put on the active list in the New Year of 1993. Although I was in my final year at university, I didn't take my finals that summer but went back home to my family, where I waited for my call.

Transplant and beyond..

My call came late one night in August 1993, I'd gone to bed early, as I wasn't feeling very well. My Mum answered the phone, woke me up and within a few minutes I was in the back of an ambulance on my way to the Freeman.  Still remember seeing the blue lights from inside the ambulance but not hearing any sound.   The operation was longer than most transplants due to my dodgy plumbing but was successful and within 14 days, I was allowed home from hospital.

My health has generally been good since my transplant and I took my finals and passed them the following January. Since then I have rarely looked back and my pre-transplant life feels like a distant memory. 

In the time since my transplant I've lived a full and active life, have got married, am mum to two gorgeous children and have developed a career working in the local voluntary sector.  

Its very hard to write this without sounding cheesy or overly serious, both of which I usually try and avoid. A heart transplant isn't a cure and there are always niggles with the side effects of medication, but it has given me a life that I never could have had.  When I had my transplant it was all so new that they talked about heart recipients living 5 or 10 years post-transplant but nobody could promise anything further because that is all they knew.  Now there are people alive who have lived more than 30 years since their transplants and I see hope for a future.

Why 2020 Challenge?
I lived 21 years with a heart that didn't work very well and still remember vividly the joy of doing new activities for the first time post heart-transplant that I could never do before, like learning to ride my bike.

This challenge is not about endurance activities; I'm not trying to impress anyone with how fast, or far, or high I can go.  It is about doing things for the first time, things I couldn't have done as a child or young adult and that people currently living with heart failure on the transplant list can not do. 

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