My Transplant Story

I wrote about my transplant experience for a UK site - this is it.

Hi, My name is Eve, I am 39 years old and I am 26 years post Heart and Lungs Transplant.  I always feel l that introduction reads like something you’d find on an AA site, but I guess with the amount of drugs I have to take, I may be eligible for membership.

I was born with Pulmonary Hypertension.  I was a quiet baby, not crying out much and I had a nice, healthy rosy glow; I was a good weight and I ate well.  My mum knew I was ill.  The doctors thought she had bats in the belfry - all except one; my GP.  He managed to persuade the local hospital, St Mary’s, to take a look at me, so I was admitted for tests at the age of 7 months.

I am not sure exactly what happened, but I know the doctor told my mum that I either had a very small problem, that was easily fixed, or I had a major problem that would probably be terminal.  Unfortunately, I chose the latter.  Mum took me to Brompton Chest Hospital at the start of 1976; about the time of her birthday.   An Angiogram was performed and fears were confirmed.  I was found to have a hole in the heart, between the top two chambers.  Alas, this was not the only problem; the bottom two chambers had died/solidified, so I was operating with ½ a heart and the oxygenated and de-oxygenated blood were mixing.  

I didn’t make it out of the operating room, mum had to sign an emergency form, so they could perform a shunt - removal of veins from legs to re-route the blood around my body.  This involved putting further holes into my heart.  That’s not a sentence you want to hear about yourself!  I flat lined and arrested so many times over the next two weeks, that mum was hardly able to speak and I know, at one stage, another mum on the ward had to fetch the doctors, as all she could do was point at the monitor and squeak.  Another shunt was performed and eventually I made it home, with a follow up check up for the following year.  I wasn’t expected to attend.  I wasn’t expected to make it to my first birthday a few weeks later.

At two, the Brompton told my parents that there was nothing else that could be done for me.  I was taken home and it was assumed that I would die.  I had the odd stint in the children’s ward of the District General Hospital up until I was about 5, or 6 years old, with heart failure.  I didn’t mind that too much; they had painted Dumbo and other Disney characters all around the ward and they had a rocking horse - I could have spent hours on that, if I had been allowed.  It was then fairly uneventful until I was 11 years old.  I took my medication, I went to school like everyone else and I took part in drama competitions and the school plays.  I didn’t take part in sports lessons and I remember finding a P.E. kit and a ballet costume, when I was about 10 years old, in the bottom of a cupboard at my mum’s place.  I guess she always hoped her little girl would have been able to take part.

By the time I was 10, it was clear that the end was coming.  My fantastic GP contacted mum and said he’d heard of an operation, for which I may be suitable.  I got onto the program at Harefield because that GP knew someone, who knew someone.  I was called in for a five day assessment,  just after I turned 11,  we stayed two days and went home on the transplant list for Heart and Lungs.  Sir Professor Magdi Yacoub recognised my lungs had taken the full hit of my damaged heart.  I wasn’t told this at the time, but indications were that I had about 20% chance of surviving the operation and about 50% chance of making it to the first 5 years.  As far as 11 year old Eve was concerned, I was going to get better, or I wouldn’t wake up - but anything was better than being so puffed, that I had to stop on the 8th stair, everything I wanted to go to the bathroom.

By the time the call came, I was having a pint of blood removed weekly, because my haemoglobin was around 24 and there was concern that I would have a stroke.   We raced up the M25.  Dad had to leave us there, but when he rang in the next day, he was told I was ready to be collected.  He was a bit confused at first, but the helicopter carrying my new donor organs had crash landed and at midnight the operation had had to be aborted.  The pilot escaped, life and limbs in tact.  I was relieved, I had tickets to go to the Panto (it was January) and I’d just bought my first album; I wanted to go home and listen to it!!

The next time the call came, it was in the middle of exam season in June.  I’d often joked with friends about it being the perfect ‘get out of test excuse’.  I have a thing about midnight.  I was born at  10 minutes to midnight.  The first transplant was aborted around this time and when the second one came in, I was escorted into the operating theatre at 11.50pm - exactly 3 hours after the call.  The nurse apologised for the arm tags that she had to attach, I said ‘It’s better than a toe-tag.’ I think my mum must have and a kitten!

Four days later I was in bed, on life support watching TV.  It was the National Donor Week.  A woman appeared on the TV crying her eyes out.  Her son had been killed in an accident, coming out of school four days before.  He was 10 years old and from Reading  His organs were used, including his heart and lungs.  I remember I got very agitated, was banging on my trolley and waving my other arm frantically - when I got mum’s attention (she had to stay outside the room) I was pointing at the TV - frantically.  I don’t think I will ever forget that lady’s face.  Some months later, the transplant co-ordinator told mum my donor was a ten year old lad from Reading.   This still freaks me out.  But there was a lady out there, that had lost her son and didn’t want my mum to lose her daughter and although there has been no contact between us, I’d know her if I saw her.

The first 22 days went like a charm.  I was textbook recovery kid.  Then, mum went back home to pick up the car, she was going to be gone for 24hours.  By the time she got back the doctors had almost given up on me.  I rang the bell and nurse J appeared; I told her I couldn’t reach the biscuits.  She told me not to be so lazy.  She wrote that I was a hypochondriac on my charts.  What I’d meant was that my chest and arm hurt so much, that I could hardly move.

I don’t know in what order this happened, but… I rejected, had a Pneumothorax (hole on the lung), I contracted Septicaemia, Meningitis, Encephalitis and CMV - all at the same time.  One of these is often enough to kill a healthy person, let alone a transplant!  By the time mum got back, I was on life support and she had a stand up row with Madgi Yacoub.  There was a young house doctor on duty - Brendon Madden.  He saved my life, got the tests sorted and against a team of very experienced doctors, he began the treatment for rejection.  He saved my life.  The nurse lost her job for not alerting the doctor, that I was so ill.

When I came out of the coma, 6 weeks later, I weighed 5 ½ stone, and I had no idea who I was, where I was, or what I was.  The doctors had tried to turn off the life support.  Mum had stopped them, saying she’d take me home, even if I was in PVS.  They then tried to take me off the life support and put me on an adult one, because they needed a child’s machine - one of the nurses stepped in on mum’s behalf and stopped this!  So what did wake me up?  A tape from three school friends - singing..and Brenden Madden got me off the machine.

Mum and I were still in the hospital in December 1988, having arrived there in June.   On the 23rd of December we walked out, drove to Eastbourne, bought a christmas tree and a turkey.  It seemed miraculous that we were home.  I lasted there until the beginning of January when the Diarrhoea (dire rear?) started!  Ten weeks.  I could only eat bananas and yogurt and I was going to the bathroom every twenty minutes.  My weight went back down to 5 ½ stone.  The doctors wanted to give me a colostomy bag; my mum refused and then ‘fortunately’ I rejected.  It was a mild rejection, but it was enough to trigger the drip fed Solu-Medrone, which sorted out my stomach.  I made it home at the end of March and a week later I was back in school, with my friends.  

So what’s happened since?  I did my GCSEs, A’Levels, went to uni - repeatedly :D, I’ve fallen in and out of love, I have a cat, I’ve learned to drive, I’ve done the Race for Life, I’ve lived in Germany, I was Head of Year and Department at a primary school:  in other words, I’ve been ‘normal’ - those that know me, may argue that last point.  I have aspirations towards completing a PhD.

The downside - I have a lot of issues to deal with now and they tend to gang up on me and attack me at once.   I have good days and bad days, I have excellent days and abysmal days.  Some days I can walk really well, get in and out of the bath, cook dinner and bake.  Some days I am good for lying on the sofa - not reading, or even watching TV.  It's pot-luck.

I’ve rejected a few times since and I am now deemed to have Chronic Rejection - the damage to my organs is irreversible; I’ve also had TLI - radiotherapy to stop this happening.   

Would I change this? No.  I’m fully aware that my lungs aren’t as good as they used to be and I get ‘a bit puffed’ from time to time.  I retain fluid and I get very VERY tired.  I’m also sad that I had to give up work;  I collapsed at my post - but I am here typing this, I have a huge Bucket List and I am ever hopeful that one day, I *may kick the EBV and I will feel  a bit perkier again.  But, I am still 100x better than before the operation and I think that after nearly 26 years, its ok to have a few issues.  I always joke that I died years ago and that I am stuck on the afterlife equivalent of lost luggage, at Heathrow.  I guess, one day I will be claimed, but I have no intention of it being any time soon.

So, thank you to Harefield - especially Magdi Yacoub and Brendon Madden and definitely thank you to my mum and my donor mum; I am out to find the latter this year.