Amanda Henchliffe

Amanda Henchliffe is 43 and lives in Belper, Derbyshire. She recently joined the waiting list for a heart and lung transplant and is an ambassador for Live Life Then Give Life.

Soon after birth it was found that I had a narrowing of the major blood vessel which takes blood from my heart to the rest of my body. The operation to remove the narrowed section when I was 4 years old was a success; I led an essentially normal life, and though told I was too delicate for sports I would ignore and join in with cross country runs at school. I think this hospital experience led me to choose nursing as a vocation, even at the age of 4. I never diverted away from this career pathway.

It was during my Nurse training at the age of 18 that I was told that I had a ‘heart murmur’. I was completely well, working, studying and attending the gym, so this came as a huge surprise. I was told that I had Pulmonary Hypertension – abnormally high blood pressure in the arteries of the lungs - most likely caused by a rare heart disorder called Endocardial Fibroelastosis, and was advised that I should not fall pregnant. There was no known treatment or cure in 1988, so as I was well I basically just carried on living my life.

In 1990 I discovered that I was expecting a baby. Half way through the pregnancy I went into heart failure (though I still did not feel unwell!) and spent the remainder of the pregnancy in hospital. My son was born 8 weeks early, in perfect health and a good size for an early baby. I was able to feed him myself and still expressed the milk after my return to full time work as a staff nurse 3 months later.

It was not until 1997 that I began to feel unwell. I went into Atrial Fibrillation and my heart began to beat irregularly. I had several electric shock treatments and medications but my heart would not return to a normal rhythm or slow down. In January 2000 I had a pacemaker fitted and further invasive treatment. It was a success. After 2 1/2 years of gradually worsening shortness of breath, dizziness and side effects from high doses of mediation I felt ‘normal’ again and was able to go back to the gym.

Two years later I started to notice that I was becoming breathless again, with some additional dizziness. I was told that it was heart failure. Different medications were tried, some causing things to worsen. Transplant was suggested then dismissed by my cardiologist who advised me that being small I would have little chance of finding a suitable pair of lungs, so to go home and make the most of my time with my family. Despite all of this I was still working full time and had even had a supplementary job working weekends.

I went home and started planning my list of ‘must do’s before I die’, booked a lifelong ambition to safari in Africa. I researched the Pulmonary Hypertension again and not only discovered lots more information but a charity providing advice. This also detailed specialist units for this condition around the country- the nearest one only 40 minutes away from me.

After much debate with my cardiologist I was referred and in 2004 commenced specific treatment, giving me a normal life again! Back at the gym every morning before work, working full time as a practice nurse, studying and of course, being Mum.

Since then the condition has continued to deteriorate. I am taking maximum doses of treatment, including a 24 hour intravenous infusion (which goes directly into my heart) via a tube in my chest. I am prone to episodes of agonising abdominal pain caused by reduced blood flow to the gut, blood clots and kidney failure and have required dialysis in ITU this year.

Last year I was referred to the Newcastle transplant unit. At that time I was considered too poorly and underweight (caused by my condition) so was not able to be added to the waiting list and they suggested a trial with the intravenous therapy called Iloprost. As I was still working full time I had to give serious consideration to retiring on health grounds as I just could not put weight on and although at that time I was in denial, I was clearly unwell.

This was totally devastating. Apart from my family my whole world revolved around my career. I was totally dedicated to my career, I was at the top, a senior nurse and practitioner in my own right.

I was referred back to Newcastle after my Iloprost trial had not proven much benefit and I had reached the target weight (43 kg) and was accepted for the waiting list for transplant of heart and lungs. I was advised that my prognosis was probably 1-2 years. I was finally placed on the active list in September this year.

Still trying to be active as possible, and having made lots of adaptations to my home and garden to maintain some independence the hardest parts are the mental changes, both for me and my family/friends. Accepting this ‘me’ is hard – I am physically different, dependant, constrained and desperate for the old ‘me’ back. A transplant for me would mean more than the chance to stay alive, but the chance to ‘live’ again.