From a very young age Carl has lived with health complications, starting with diabetes. He was put on the transplant list at age 24 and today is sharing his journey to help raise awareness of organ donation this organ donation week.
My name is Carl Jones. My journey on the road to a transplant began at 5 with a diagnosis of diabetes. I have had health problems and complications most of my life but for a brief period after my diagnosis at 5years old, the diabetes went away. My family was told by my doctors that it would come back, and at age 11 it did!
Whilst growing up I remember having a couple of kidney biopsies and visits to see a professor at Birmingham children’s hospital. The function and health of my kidneys and the related problems came when I was around the age of 22. It happened fast, my kidneys suddenly got worse, and I was admitted to my local hospital, my results were so bad I had to be transferred to a specialist hospital where I would have access to the expert care and treatment I needed. While there I learned I need to begin dialysis. So, I began home dialysis and was soon put on the transplant waiting list at the age of 24.
I eventually transferred onto haemodialysis. Whilst I had been dialysing at home I developed a blockage in the pipe in my stomach, I was retaining so much fluid that it was putting pressure on my heart. During a routine operation the fluid retention complications caused me to have a cardiac arrest. I had pace making wires inserted into my chest, when I had them removed I had another cardiac arrest! The doctors finally arranged to insert a pacemaker into me to help my heart.
A few months after being put on the double transplant list, for a kidney and pancreas, I received a phone call during the night saying that there is a chance of a match. An hour or so later I was contacted again to confirm I would need to make my way to the hospital to have blood tests ready for my double transplant.
I had my double transplant, and everything went well for the first few weeks to a month, I was on 2 tablets a day but feeling positive. It was a difficult period for about 2years, there was a lot of back and forth to the hospital trying to resolve the problems I was having with my new kidney. 6 months later it had rejected, and I had to start back on dialysis again. My pancreas lasted for a further 8 months but failed when I was around 26. I was back on 2 injections a day for diabetes, and regular dialysis for my renal replacement therapy. I went on like this for about 2 years
In 2008 I was given another lifeline. The phone rang and I was told there was another match for me. The double transplant happened the next day, however, complications arose when my lung shut down. I hadn’t been breathing properly due to the pain and was promptly rushed to intensive care to be put into an induced coma. My girlfriend and family were informed that there was a 50/50 chance I would survive the night.
I was lucky enough to pull through but not without a little damage. During the operation a nerve was damaged, and I lost the use of my left arm.
I left hospital 2 weeks later, after about 6 months, I got use back in my arm and I am pleased to say that to this day everything has been brilliant! My girlfriend has been a rock for me and so has both of her family and mine.
It has now been 14 years & my transplant is still working really well. I am so thankful to the person who registered to join the organ donation list, their decision has been life changing for me and my loved ones.
Learn more about how to have the conversation about organ donation here: https://www.organdonation.nhs.uk/talk-to-your-loved-ones/
Find out the UK facts: https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/statistics-about-organ-donation/