Organ Donation Week: Rhys' Story

My name is Rhys and my life has been saved twice by organ donation due to two heart transplants, in 2011 aged 25 and 2021 aged 35.

At 3 months old my parents noticed I was not gaining weight like other babies my age, and I also struggled with my breathing. We were sent to the Heath hospital Cardiff (UHW) where I was diagnosed with a Heart condition called dilated cardiomyopathy. Cardiomyopathy affects the pumping ability of the heart muscle. The consultant told my parents it was unlikely I would see my first birthday. After an assessment at Great Ormond Street hospital, I was prescribed twice daily medication to take pressure off my heart, and I had regular hospital check-ups.

Growing up, I did most other things my friends did, but on doctor's orders, I was held back from doing certain activities such as participating in competitive team sports like rugby or football. I found being told I could not do such things around the age of thirteen very difficult. In my mind all I wanted was to be normal or do the same things as my friends, but I did get more out of breath compared to them. However, I learned how to live with my limitations.

In my teens and twenties I passed by GCSEs, started working, passed my driving test, went on holidays with my mates, went out socialising, and (with the blessing on my cardiac team), started playing 5 a side football.

In 2011 my health began to deteriorate. I started feeling weak and tired around my 25th birthday. I started looking pale and suffering from headaches. Initially I thought I was just ‘burning the candle at both ends’. Along with feeling more weak and tired, I was pale and experiences dizziness, headaches, a loss of appetite and regular chest infections.

My mother remarried that summer, and after struggling through the day, we requested an urgent check-up. Following an echocardiogram, I was told there was no more that the medication could do to help me and I was in heart failure. I can still picture the doctor’s face before he broke the news. He told us the only potential option would a heart transplant.

Obviously this was a huge shock. I had grown up knowing and being told a transplant was the only ‘solution’ for my heart condition. but as a family we never really thought it would ever happen, and we had never talked about it.

I underwent tests and a transplant assessment at the Queen Elizabeth hospital Birmingham. Thankfully I was suitable for a transplant, but I had to undergo a three month course of medication to lower the pressures in my heart and lungs and have regular check ups. During this time I attended a friend’s wedding, and the day was a struggle. I came home late at night and putting some music on and listening to Coldplay’s ‘I will fix you’. I remember sobbing in my bed, and thinking that this should not be happening to a 25 year old.

Despite a few stints in hospital the medication worked and I was placed on the routine transplant list. Signing the consent form was very emotional and frightening. The statistics and survival rates were tough to listen to, but I had absolutely no other option. This was my only chance at survival. I went home to wait for the call.

By mid October I deteriorated even further and was so weak and dizzy. My family took me to UHW, and I was then transferred to the Queen Elizabeth hospital in Birmingham. At this point I was added to the ‘urgent’ transplant list and told I would stay in hospital until my call came. The medical team were struggling to keep me stable.

I was told about a potential donor six days later, and after being prepped for the operation, I was finally told it would be going ahead. I had a lot of mixed emotions. Relief, shock, fear, and also sorrow for a family who were out there grieving a loss of a loved one. As I waited for the anaesthetic to kick in, I put my hand on my failing heart one more time to feel it beat.

The next thing I remember is waking up in ICU and asking my brother about the football results as it was a Sunday. I am told the operation was around 8 hours. I recovered very well physically and despite being very weak before the operation I was up on my feet after a day or so.

I was back on a normal ward 6 on day six but on day 7 I had a complication and I collapsed and started fitting on the bed. A bleed was identified from my diaphragm into the cavity where my old heart had been. This bleed had collapsed one of my lungs. The crash team was called and I was rushed back down to ICU. I saw first-hand a team of amazing NHS staff all working on me to save me. The team waited until early morning to repair the tear in my diaphragm. After that I recovered well and was back up on ward 306 eating well within days. It was like my body had been switched back on.

I was home within 5 weeks of the transplant operation in time for Christmas. I wrote a card to the donor family to let them know how grateful we were for their selfless gift. I also wanted to reassure them that I would look after this gift in any way possible, and that it went to a hardworking loving family. I returned to work within 10 weeks of getting back home on 13th Feb which was exactly eight months since I worked my last day. I just wanted normality again.

At 5 months post transplant a routine angiogram was carried out due to risk factors from the donor, and my medical team discovered narrowing in the arteries of my ‘new’ heart. At the time it made absolutely no difference, my ‘new’ heart was working great. I had three stents fitted, and 8 weeks later I climbed Mount Snowdon.

Over the next 10 years I lived a normal life. I built a successful career and I won salesperson of the year twice. I went on nice holidays. I followed the Wales football team at Euro2016 with friends. I bought my own house. I met two new baby nieces and three nephews. I was asked to be best man twice which was an honour despite my nerves. In my spare time I tried to put effort into remaining fit, frequently going to the gym. It was very important to look after this priceless gift I had been given whilst also remaining sensible. Most importantly of all I met my amazing fiancée Sarah in June 2018. Sarah is very understanding and supporting. She has always tried to understand and learn about my health issues and has always treated me normally. I was so relieved to have met someone who I got on so well with and had a wicked, if slightly warped sense of humour like mine.

Routine angiogram tests were done every 2 years as the transplant team were not sure how the arterial narrowing would progress in my body, and in 2019 an angiogram revealed the narrowing in my coronary arteries was now getting to a dangerous level, accelerated by my rejection medications.

The Queen Elizabeth team in Birmingham introduced the idea of a second transplant. Until this point I didn’t know a second transplant was possible. I attended a 2 day assessment again at the QE in November 2019, and after assessment I was given two choices: I could change to a rejection medication that would slow down narrowing, but mean I couldn’t have a transplant while I was taking the medication. Or option two, be listed for a second transplant. It was a more difficult decision this time, but I decided to go on the transplant ‘routine’ list in December 2019. Routine transplant list means you are well enough to go home and wait for a call but then you have to travel to the hospital immediately should you get a call. The strange thing was I felt really good, apart from the slight breathlessness on exertion. Totally different from the first time when my heart was failing and normal everyday tasks were affected.

The pandemic hit in March 2020. I stayed on the routine transplant list. As a family we tried to live a normal life. Sarah and I found out we were to be parents for the first time and our son Albi Rhys was born in November 2020. Unfortunately, he was also diagnosed with dilated cardiomyopathy due to an unknown gene mutation from myself. In May 2020 I asked Sarah to marry me, in front of our family and some friends. Thankfully she said Yes. These huge moments in my life obviously would not be possible without the amazing donor family whose gift gave me another chance at life and to achieve and experience these things.

I tried not to do anything too strenuous and kept a close eye on myself and any symptoms developing and kept an eye on my blood pressure.

In November 2021 we received a call from the team in Birmingham about a potential heart, asking me to travel up straight away. We kept in touch with the transport coordinator at the QE a few times throughout the journey. She was reassuring and calm. With Sarah driving I wrote notes and letters by hand for some family members, including information about passwords for paying bills and more serious things like funeral wishes if I did not make it.

My family travelled up and took it in turns to come in and spend time with me while we waited for further updates. It was an anxious wait, emotional of course and there were lots of tears from me. Until the moment they wheel you down to theatre, the transplant can be cancelled at any time. It also felt like there was more to lose this time with Sarah and Albi being with me this time.

The transplant team told us around 4pm that the donor family wanted more time with their loved one. This really hit home. We were very understanding: There was a very brave and selfless family grieving their loved one.

I got wheeled down to the theatre at around 23:30 pm on the Saturday night. I remember hugging Sarah and Albi right before I went through the double doors on the bed.

My operation went to plan but my new heart did not work effectively right away so I was put on an ECMO machine to do the work of my heart and lungs and placed on kidney dialysis. Over the next few days I deteriorated. My medical team found and operated on blood clots on my heart and I developed serious infections and other serious health issues. During that time I was sedated for 14 days straight. I had a catheter, had to be fed via a tube and could not move at all. It took me a long time to recover, and I was in hospital for 58 days in total.

This was right in the middle of Covid restrictions and I could only have the same two visitors once a week. During this time Sarah, my son and my family came up and stayed at the onsite chargeable accommodation. My fiancée Sarah and son Albi could not stay here as the place was apparently not insured for children. Sarah had to pay for a separate hotel. I later found out that while I was sedated, friends had set up a go fund me page to raise money for my family, and to help towards the cost of accommodation, travel and other expenses. I will never forget the generosity shown and will forever be grateful to everyone who donated and supported us.

I slowly improved, thanks to physio sessions and an exercise bike in the room. I reunited with my son Albi for the first time in forty seven days on 6th January. This was really emotional and another step closer to normality.

I eventually returned home in January 2022, and continued my rehabilitation by helping out with household tasks and walking the dog. I started a local cardiac rehabilitation course mid March which was a huge help to my cardiovascular health and physical strength and improving my posture and balance. I also went fly fishing a few times between March and April which further helped me physically and mentally recover as being outdoors did me good. I started back at work in April 2022. In hindsight this was a bit soon but it did help my recovery in terms of giving me a routine again and catching up with staff and colleagues. After the second transplant, for about a year I struggled to think straight, and my moods were up and down. I was perhaps still trying to accept all that had happened. Sarah deserves immense credit for putting up with this.

Back to the present day in September 2024. I am so thankful to be able to live a relatively normal life. I will be forever grateful to both my donors and their families. Also the NHS teams who have kept me alive through all the years and continue to monitor me.

My ‘new’ heart is working well and I get check ups every six months at the QE. The team are also on the end of the phone if I ever have any questions or concerns. I take medication four times per day. I have kidney impairment which I am told is caused by one of the rejection tablets. This is monitored by regular bloods and check ups every 3 months. I also have steroid induced diabetes which is caused by one of the other rejection medications. This is under control and is something I am getting used to and learning to live with.

Since my second transplant I have been able to do many things. The best is to be a father and watch my son grow up and nurture him. I saw his first day in school and have seen him take part in school concerts and sports days. We have had holidays abroad and I enjoy working full time. I go to the gym on average once per week to try and maintain my fitness. I try to be the best father, partner, son, brother, friend and uncle possible. I am lucky that I can have goals and dreams like everyone else thanks to the gift given to me. I try to balance enjoying myself with looking after the precious gift I have been given.

Having two heart transplants has changed me. First of all, I am still here. Going through this taught me to try not to ‘sweat the small stuff, to stay out of drama, and to make an effort with those who make an effort with you. It has taught me that there is so much good in the world and some very generous people in it. We had so much support during both transplants I will never forget that. I will keep talking about organ donation as it saves lives.

Please register your wishes relating to organ donation and discuss this with your close family. I have met lots of organ transplant recipients. All hard working, good people with families. Some of these may require transplants due to having heart attacks, or side effects from cancer treatments, or genetic disorders like mine, things beyond their control.

I hope you or your family are never in that situation but none of us know what is around the corner.

Thank you,

Rhys

You can find more information about organ donation by clicking here.