Life Stories

Ellie's Gift of Life

At the age of 13 I went to the doctor with a chesty cough that I couldn't shift.  I was told that my heart was dropping every third beat but it was normal for somebody my age due to hormonal changes.  Mum had to fight to get a referral as family members had died of heart-related issues.  When we had been referred we discovered that I had dilated cardiomyopathy but my left ventricle wasn't enlarged enough to have been diagnosed.

Three years passed and I was absolutely fine; my heart condition didn't encroach on my life at all.  However, at a six-month check-up at Leeds General Infirmary my heart had got worse.  I was referred for a heart transplant assessment at Newcastle’s Freeman Hospital but was too well for transplant; similarly six months later.  I was 16 years old at that point.

Over three years my heart started to improve and things seemed to be going really well.  In July 2016, after my A Levels, I went on a girlie holiday and got pneumonia.  An appointment in August showed my heart function had decreased but the consultant suggested we waited and monitored things.  An appointment was made for review in November.

In the meantime, my health started deteriorating.  I couldn't walk up the stairs without stopping and was extremely tired when I reached the top.  Every day routine tasks such as brushing my hair, teeth or taking a shower became a task.  I was working as a care assistant at the time.  I couldn't manage the workload but I still carried on. I had a heart scan at Leeds General Infirmary on 12th October which confirmed that my heart function had worsened.  My consultant in Newcastle called two days later to suggest I came for another heart transplant assessment.  I was told not to go back to work until we knew what was happening.

The weekend before my assessment I ended up at my local A&E department with heart failure symptoms.  They didn't know what to do so suggested I waited until Monday.  I spent that weekend thinking I was going to die; I have never felt so poorly.

Monday came and I was happy to get to Newcastle; I thought this period of me feeling unwell would blow over. However, I got a kidney infection during my assessment so I had to stay in hospital for two weeks instead of four nights.  The one thing that would determine if I was actually going on the transplant list was a heart cath procedure to check the pressures in my heart and lungs.  I had the procedure and found out my pressures were 11; if they had reached 12 I'd have been unsuitable for transplant and I would have needed the LVAD to bring my pressures down. The consultant told me I was going to be listed for an urgent transplant and would have to wait in hospital.  I was so shocked.

That evening I went home; it all felt surreal.  I spent that week seeing friends and family and was urgently listed on 30th November.  As my pressures had been 11 I would struggle getting my transplant as I needed a larger donor heart, so the plan was to be listed, take milrinone for one week and a half and to have the heart cath procedure again. Luckily my pressures came down to eight which meant I could have a smaller donor heart; those are easier to come across.  It was a bitter sweet moment!

Waiting in hospital was so hard; Mum and I were 100 miles from home.  I spent Christmas and New Year in hospital.  I was put on build-up drinks as I wasn’t eating.  My muscles started wasting away, making me lose weight.

One afternoon in early January a friend had just left; Mum was at home.  I was about to tuck into my skips when a nurse and two healthcare assistants came and told me there was a possible match.  I was so scared but so happy.  I remember thinking that I really wanted the op to go ahead, but I couldn’t help thinking about the person – my donor. I called Mum who came right away.

I was prepped for surgery and told the op was going ahead; I went down to theatre at 23.45.  I was awake by 8:30 the next morning and off the ventilator by 9.00.  I was moved from intensive care after four days and was home 17 days post-transplant.

Since my transplant I am doing great, I've had no rejection and my life is slowly going back to how it was.  I think about my donor and their family every single day; if it wasn't for my donor being on the register and their family for saying yes to organ donation at the hardest time of their lives, I wouldn't be here today.  I wish I could just find the words to show how grateful I am for receiving the gift of life from a stranger; there is no gift greater than this one.

Ellie Holman