At the age of 28, everything completely changed. My entire life turned on its axis. I had lived an incredible life so far and I was happy.
I went to school and university, I backpacked around the world, I moved to London and worked hard, I had great friends and family, I was social, active and healthy until I wasn’t.
Everything changed
At the end of 2018, I started to get a chest infection. I carried on with the Christmas festivities but it wasn’t getting any better so I took myself to the doctor. They gave me antibiotics and sent me on my way. I carried on as normal. As the New Year came, the illness intensified. I was suffering from vomiting, headaches, shortness of breath and I was seriously lacking in energy. The doctors kept sending me away with more antibiotics. It was so frustrating that I even took my mum in with me to try and get them to check for anything else. I had never felt so unwell and I every time I tried to lie down to sleep I would have a coughing fit.
As time went on, I decided to stay with my Mum for a while because I just couldn’t cope by myself anymore. I couldn’t even walk up Mum’s small driveway without stopping to catch my breath. Eventually, my breathing became so laboured, so shallow, that it was clear that I needed more help. So on a Saturday night at the end of January, we went to my local hospital.
Rushed to hospital
After a few tests and some worried-looking faces, I was rushed to the Cardiac Care Unit. Eventually, I was informed that I was in heart failure and would need to start taking medication immediately. It was a shock, but I was alive and they were hopeful that with the drugs and some rest I would be able to lead a relatively ‘normal’ life. Sadly, this wasn’t to be.
I crashed immediately. My heart was failing and things seemed to go downhill very quickly. Luckily the hospital was already in contact with a specialist heart and lung centre who advised them to put me on to an IV isotope drug and transfer me as soon as possible. I had my first journey in an ambulance, blue lighted the whole way and was settled into my new home.
My new hospital became home for four and a half months. It was a big, old fashioned building filled with some of the best doctors, surgeons and nurses that I could have asked for. I was kept alive with the IV medication – it made me feel so much better as it helped my heart pump the blood around my body.
Endless tests
The nausea subsided and I got my appetite back. I made my room feel like home with photos, cards and messages. I got to know some incredible people in the same situation as me and I had visitors most days which kept me going.
In my mind, I still thought that after a few tests I would be able to go home soon and get back to normal, but I was both naïve and in denial. I had test after test; echo, ECG, PET scan, CT scan, MRI scan, heart biopsy, right heart catheterisation, x-ray, blood test, urine test and probably many more. I lost 10kg in weight while the fluid was drained from around my organs. There were things to do every day and my team were working hard to find out what was going on.
Only one option
It came down to Dilated Cardiomyopathy – my heart was enlarged, scarred and barely pumping enough blood around my body. My consultants concluded that it must have happened because of a viral infection; even though there was no way to prove this as the biopsy showed that there was no sign of infection anymore, it was the only option left. It was purely bad luck.Â
After a small (two week) stint at home, I was readmitted again. The team had wanted to see if I could tolerate oral medication for as long as possible to extend my life. They took all the precautions necessary, even fitting me with a subcutaneous defibrillator (ICD) before I went home. I was so excited to be discharged but I was very weak and I was vomiting a lot from a reaction to the pain medication. The first week back in my own bedroom I couldn’t get out of bed. I felt so sick again. They pulled me back in as soon as they realised that this wasn’t the right path.
At that point, we all knew what way this was heading; transplant was the only option. I needed a whole new heart.Â
Heart transplant list
I was officially placed on the urgent heart transplant list. This was it, the only answer to keep me alive; to let me live, someone else had to die. Of course, this was a lot to get our heads around. I had been completely well four months ago. And now I was dying.
I had the best support from friends and family and they are what kept me going throughout this ordeal but I obviously would not still be here, writing this, living my life, without the person who was selfless enough to donate their organs when their time came.
A new heart
Six weeks after being listed, I received the greatest gift I will ever receive in my entire life. My recovery has been slow and steady and 16 months later I am still here; happy, healthy, grateful and full of life.
It is so incredible to me that I am alive because one selfless, beautiful woman donated her organs and her family were able to respect her wishes. The heart-pumping inside of me right now was not mine to begin with but she gave me the best gift I could have ever wished for when she gave me more time to live. I plan to make the most of every single second of it.
