I’m Helen Presdee-Jones and I’ve been a renal patient since I was 16. After almost a year on peritoneal dialysis I received my first kidney transplant, which fortunately lasted almost 20 years. I waited 5 years for my second kidney transplant, and for 4 of those years I was on a mix of peritoneal and haemodialysis. Thankfully, my second kidney transplant is still going strong after 2.5 years.
Unfortunately, I’ve experienced a few significant (and rare) side effects of taking immunosuppressants, including PTLD (post-transplant lymphoproliferative disorder) presenting as a benign brain tumour, and last year was successfully treated for cervical cancer.
However, I count myself very lucky that so far all of my medical issues have been curable or treatable by the amazing NHS.
Below are 3 important personal experiences that for me highlight how important emotional support is for those living with physical illness:
Supporting young adults
For many, renal failure is seen as an “old people’s” disease as many of the patients are in their 70s or older. However, I was diagnosed with renal failure at 16 years old. It’s hard enough to be a teenage, let alone being one accepting a life changing physical illness! At that age I didn’t fit into paediatric renal care or adult renal care. Morriston hospital went the extra mile to accommodate my unusual situation by providing me with a side room whenever I needed hospital treatment and being flexible with visiting hours so that my parents could be with me as much as possible. This was all a tremendous help and as I reflect back on this time, I know that I was lucky to have medical staff who could empathise with the difficulty of the situation, with many of them having children of similar age to me.
Living with physical changes from treatment and medication
Due to a significant reaction to a type of immunosuppressant I am now on steroids for ever. I am learning to accept that I won’t ever look like I did previously. I find this tremendously hard to live with. I look in the mirror and I don’t see me. I hear my voice, but I don’t see myself in my reflection. It affects my self-confidence, stops me leaving the house at times and my personality has changed as a result. I miss the person that I was.
Friends and family try to support me. However, without them “living in my shoes” they don’t truly understand how it feels. A friend of mine was treated for a physical illness a couple of years ago and as a result has to take long term medication which means that she no longer looks or feels like herself. From this awful situation, we have developed an empathy for each other. Sympathy is one thing, but empathy from someone who is living a similar life to you is something completely different and very comforting.
Living with the side effects of medication
With medication come side effects. The significance of these side effects is often overlooked as the success of managing the source of the problem is celebrated and people think you’re cured. Often this isn’t the case and you’re starting a new challenge to manage a whole host of side effects. Taking immunosuppressants increases the risk of you getting other health issues. Unfortunately, I was one of the rare cases where I reacted to a type of immunosuppressant which resulted in me having a non-cancerous brain tumour. Thankfully I recovered, and last year I was successfully treated for cervical cancer. This ongoing battle with the side effects of taking immunosuppressants is challenging. However, I know that having a kidney transplant is the best thing I’ve done and taking the immunosuppressants is required for me to be alive. I definitely wouldn’t be here without my transplant.
Helen lives in Cardiff but is intending to move back to West Wales and nearer her family. Helen is a volunteer ambassador for Kidney Wales.