Caroline Young works as one of our team of Advocacy Officers working on the ground throughout the UK to offer support and advice to fellow kidney patients. Caroline had a transplant in December last year. Here, she shares her story:-
" I have been aware of my Polycystic Kidney Disease (PKD) since I was a youngster, it was not until I was 30 and wanting to have a child that the realities of the risks and what that really meant for the future hit me. I had a difficult pregnancy suffering with pre-eclampsia and spent most of the last trimester in hospital, but it was worth it when I gave brith to a bouncy 9lb baby boy.
A few years later I began to experience visual difficulties which affected my balance; my GP kept putting this down to the stress I was experiencing as a single mum, but I knew it was more. I didn't know if it was related to my PKD but knew it was a possibility. As soon as I mentioned the problem to the Nephrologist I was referred to optical specialists at the Royal Free London and underwent a raft of tests. The results came back and I was diagnosed with two bilateral (one each side) cerebral aneurysms. I underwent corrective surgery (double vision, black and white vision and some speech difficulty) corrected themselves.
It was August 2014 when I entered Stage 3 ESRF. I knew it was coming, but I didn't expect it would be so soon. The decline in my kidney function to eGFR 12 took until October 2015. I opted for in-centre haemodialysis because I hate needles, and was quite frankly, terrified. I had an operation to form a fistula in my left upper arm and off I went.
Thankfully the nursing staff were wonderful and coped with me and my needle phobia very well, even fellow patients offered support and tips. By this time my son had flown the nest and I was living alone, trying to maintain a job and the home along with three weekly three and half hour dialysis sessions. In reality the sessions took much longer than that, waiting for transport, waiting to be called in and often with difficulty cannulating my fistula. Life on dialysis can be hard; it doesn't make you better, it keeps you alive.
On the 9th December 2016 I got the call. I was driving home from work, saw the number for Guys hospital and pulled over. I don't honestly recall the conversation in detail but I remember the surgeon was very calm, patient and kind. By 6.30pm I was at Guys hospital and whisked up to the renal transplant ward, conversations with many of the team and by 10.30 I was being prepared for theatre.
I was in theatre until 2am. As soon as the effects of the anaesthetic had worn off, even with the pain of the wound, I felt so much better, (well, apart from the catheter!) I had a minor hiccup with an infection, that was sorted quickly but did entail a few hospital stays.
On 23rd December I was finally discharged home and my new life began; I felt like a new person. There have been some upds and downs - I was made redundant - but I saw this as an opportunity to do something different and better with my life. I successfully applied to join Kidney Care UK as a patient advocate and now work helping others who are going through kidney failure at whatever stage they may be. I have energy to maintain my home, I walk every day and on the weekends try to walk at least two to three miles, my diet is considerably less restricted and I can drink when I am thirsty.
The negative feelings I had toward life in general have completely gone, I feel like I have a positive future ahead of me and this is all thanks to the kind person who agreed to become an organ donor by signing the organ donor register. Not only have they helped me, but because I am now well enough to work I get to help others as well - I hope that they would be proud of how far I have come thanks to them donating their kidney to me"