Heart Transplant Hero selected for Team GB

My inspirational friend Tia, who has recently had a Heart Transplant, thought she would never play sport again… against all belief, Tia has been selected to represent Great Britain and play volleyball for Team GB in the World Transplant Games 2025, Dresden, Germany.

The money we are hoping to raise for Tia will contribute towards her registration fee and flights to the games.

Even if you give a tiny donation or just share Tia’s story, this is going to help not only Tia playing for Great Britain, but will also show WHY Organ Donation is so so important and how much life can be changed.

#organdonation #tellyourfamily #letthemknow #givelife #liveon

#QEBHC

Here is Tia’s story:

I am so lucky to be part of the games for my first time ever. I really hope I can make a difference to the team and make my family proud. 

‘Let the Games Begin’ 

——-

Hi, my name is Victoria Thomas, known as Tia. 

Here is my journey 

I have always lived a fit, strong and healthy life, I have been a keen sports player since young and focused on playing premier league netball within my local teams. 

I had my first child, my daughter in 2011 and I continued to be a keen sports player and all round exercise enthusiast.

I was in my morning boot camp session in April 2019 when I suddenly suffered an unexplained cardiac arrest. I was very lucky to survive. After having an ICD fitted, I recovered to the fullest and continued playing netball, the best netball I have ever played. 

I then fell pregnant in 2021, I fell ill straight away and I had numerous cardiac arrests, but continued my pregnancy and had my little boy prematurely at 30 weeks in Oct 21. I thought everything was going to be fine again. 

However 6 months later I got extremely unwell and was diagnosed with Danons Disease and end of life heart failure. 

My life spiralled out of control in and out of hospital and appointments until, I eventually had to leave my little baby and family and wait in Birmingham Queen Elizabeth hospital as I was placed on the urgent heart transplant list. 

When I was omitted into the ward, it was the scariest thing I had to go through. Being in this kind of ward/CCU you are thrown into being around very very ill people. 

The main thing that I had to get my head around was that, I was only going to survive a few more months if I didn’t receive this gift of life. I was told this many times but it never did once sink in, not until the last month of my stay did it really become real to me. 

The waiting every day, trying to push yourself to be optimistic, trying to keep strong and not deteriorate mentally aside to physically was a fight in itself self.

I was so grateful for every nurse and doctor and HCA that looked after me, I loved speaking to everyone including the cleaners right up to the transplant consultants. I found a strong connection with everyone. When spending so much time with these wonderful people, they become more of family to you. 

Everyone wishes you to have a heart, everyone gives you courage and hope and assurance. 

For me, as my family lived a while away, and aside from the lovely patients I met, I had to focus my energy of things that would get me through and liked to spend a lot of time alone. 

I made sure I got up at the crack of dawn everyday, cleaned my room, made my bed and got my walks in, it’s so hard but you must stay active otherwise you deteriorate in many ways. 

My favourite walk (while carrying all of my pump machines full of furosimide and dopamine) would be to walk to the top floor to watch the sunrise each morning, or the sunset each evening. I would listen to music the whole way and dream of being out of this place. 

When having so many routine tests and bloods and tablets, you begin to know the process and what is needed, sometimes I felt like I could even work on the ward my self. 

There have been many scary times in these 5 months of waiting, times my heart got so poorly I had to be taken back to CCU, times the doctors would rush into my room as I would constantly go into VT, the worst time was contracting covid and had to be taken off the list altogether for 2 weeks. There were times I was on CCU and had to watch young and old people die around me. Intensive Care was the worst, I will never forget the families shrieks, cry’s and painful sounds when loosing their loved ones.

The first heart I was offered after being on the urgent list for just 2 hours came as a shock, was it that easy? unfortunately that heart was not meant for me and it was given to someone else. I was very happy for the person that did get it, as they had waited for so long, although it was devastating, what was worse is they didn’t make it I the end, another complete blow and realisation of the situation I was in. The second heart was vetted and was not healthy enough for me. 

After this, I waited another month before anything, I tried tarot cards, meditation, hypnosis etc.. but I gave up. One day my heart started going into VT constantly and I just knew it wasn’t going to be much longer, I was scared. One evening, I took my first trip to the Chapel, I watched a film called 2 hearts, watched the London Marathon and thought, that’s it, it’s never coming. I turned off my mobile phone (which wasn’t allowed) and I turned over, it’s not coming. 

Within one hour the nurse was waking me up as they had found my heart… I knew instantly it was the right one. 

I had to call my family again (as they are the first to know) and you have to get them travelling to you, even if it doesn’t turn out to be good, but I knew this time I wasn’t going to have to say ‘no, turn around it’s not for me’, this time, I knew it was mine. 

It was as quick as lightning, the next thing I remember I was being wheeled down in the bed, I was so happy! The smile on my face said it all. All i wanted to do was to get back to my children.

The next thing I remember, as I was being wheeled out of theatre, I woke up! Which was unusual as everyone stays asleep for at least a day or two up to three weeks even, after the op. 

I recovered so well, that afternoon I was walking around and was ready to go back to CCU, again, extraordinary. 

The pain was unbelievable but I didn’t mind it at all.. I just wanted to recover and get home. 

After, I was taken to CCU where they monitor your heart with a pacemaker attached to it and eventually they turn the pacemaker off however, my heart, my new heart, over read the pacemaker before they even had a chance to do anything so there was no point having it on. it taken its own beat and was working by itself absolutely perfectly. 

I made sure I walked with the physios and did stairs straight away, which was crazy feeling because I haven’t been able to walk a flight of stairs in over a year!!! That was great. 

I then got back into the ward and recovered even quicker. The worst thing at this point was the drugs we have to take. Of course we have to take them to keep us alive so I’m not grumbling too much but the way they change your body and face and the way you feel is definitely one of the biggest hurdles I have to get through. 

I was ready to go home within two weeks after my operation, however, even though I had not heard of this, as I was ready to leave my room, they came to me and said I’m afraid you have rejection. I was devastated, how could everything be going so well and then rejection?? that meant I had to be pumped with serious steroids and stay another week yet all I wanted to do is get home to see my babies.. the following week I had another biopsy and I was clear of rejection and I was able to go home.

I rushed home as soon as I could it was so amazing to see my children and have my baby back in my arms. It couldn’t have been any better. Unfortunately, my body started to hold a lot of water and I’d put on over 8 kg in water weight, I was home for 24 hours before I had to be rushed back into the hospital. 

I was put on large doses of IV furosemide and eventually over the next two days drained my whole body and I was back to my normal size. 

I was able to go home again, and I have never looked back since. 

I did have rejection one further time when I contracted Noro virus as my tablets would not stay down, but apart from that I’ve been very healthy and strong and I hope to continue for as long as possible.

I was seeing the hospital once a month for biopsies and being taken great care of, then two months ago I was told they wouldn’t need to see me for six months which was a great shock. Although this is a good thing I have felt very scared and I am definitely looking forward to my next biopsy to ensure in my mind, that everything is okay.

The bottom line is, life is a tablet these days, but definitely a tablet I’m willing to swallow, hospital visits are less and I am so grateful to be alive, I have so much to look forward to and do. 

Since this day I have never looked back, I am grateful and blessed. I have my family back, I work full time in my favourite job, I keep myself healthy and focused and I am more determined than ever to get back to playing sports. 

I am so lucky to be part of the games and really hope I can make a difference to the team and make my family proud

A special recognition must go to my donor and their family, the selfless act of giving me life, from my family to theirs, and from me. I will always be entirely truly and wholly grateful for this gift.