Stuart SmithTransplant Patient
My story began way back in 1977, flared trousers, Saturday Night Fever and of course Disco music as well as cherryade at school discos if memory serves me correctly. I was diagnosed with HSP at 10 years old and was living in Leicester at the time. Often seen wearing jumpers my Nan has knitted for me.
My consultant was the late Professor John Walls who also referred me to another Dr in Birmingham. It was called the East Birmingham Hospital back then and saw Dr Winterbourne on a regular basis. Constantly going to hospital and remember my Dad carrying me down the stairs on some occasions. This may have been the IGA nephropathy part I don’t recall all of it. Although I do remember being in hospital a lot at that time. After missing a lot of school I eventually stopped taking medication at around 16 years old.
Eventually I was just seen at the Leicester General Hospital not far from where we lived, under Professor Walls and Dr Feehally as he was back then. Now Professor Feehally a leading Nephrologist. Whilst under Dr Feehally I had my tonsils removed and donated them for research. I remember wanting to help where I could as I was told kidney problems would return in late 20’s. This prediction turned out to be correct, if a little earlier as I was diagnosed with Chronic Kidney Failure 14th December 1994 at age of 26. The photo on the right is in the summer of 1994 and the last photo I have before becoming ill.
Where I was working at the time I kept feeling unwell and having headaches. This went on for some time and my Nan mentioned I may need glasses as my Dad had them also. I like many people just carried on working and popping aspirin for the headaches, until matters took a turn for the worse. I ended up in A&E in Kingston near to where I was working, I could barely see and my vision was very blurred. The Dr’s had no idea what was wrong with me and were going to send me home. I remember my girlfriend at the time asking for a second opinion. I am so thankful she did because my blood pressure was at a dangerous level I was told and my body was full of toxins. I have no memory of the kidney stages we now have, but the eventually told me I had chronic kidney failure on 14th December 1994.
Dialysis – Happy Birthday
So, 5 days after my diagnosis and CKD I started Dialysis on my 27th Birthday a few days before Christmas. This was at St Helier hospital closest to where I was working at the time. The Nurses were amazing because it was a very emotional day for me and they bought me an ice cream cake. It was such a lovely memory and I have fond memories of the nurses who looked after me. I eventually moved to Leytonstone and started dialysis as the Royal London Hospital.
I struggled really badly with Dialysis and have no good memories of it. Although it could have been how I was feeling at that time. It was a very low point for and the first time I ever experienced depression. Back then it was very much man up you will be fine kind of mentality from family, who sadly failed to understand how ill I was. Splitting from my girlfriend and just feeling awful about myself, I found it very difficult to accept my condition.
1994 became 1999 and the bad year continued for me as my Nan sadly passed away in the summer of this year. I remember arranging Dialysis in Norfolk so I could see her before she died. My depression got worse in the Autumn and I was thinking some very awful thoughts at the time because no one seemed to listen or understand. I never really understood much about how I was feeling, but in essence I kept asking a question many of us as patients ask, why me?
Then the at a really low point I got a call, this was November of 95. It was like I had awoken from a deep sleep, kind of lost at sea now finding a way back to shore. I had to have lots of blood taken for all the testing and went off to have Dialysis. I just sat and read books as I often did on Dialysis back then, Mel Gibson’s autobiography if I remember correctly. Then a Dr came walking towards me, her name escapes me. But I can still see her face to this day, as I knew what she was about to tell me before even spoke. The Dr explained that someone else was a better match and the transplant won’t be going ahead.
The Gift of Life
Whilst I did not receive the kidney on that occasion, it did give me hope something I know I needed at the time. I have learnt over the years being honest about your mental health actually helps you to deal with it. Three weeks after my first call, something amazing happened I received another call saying I was a match. It came though on my pager that they gave me at the time. Because they already had the bloods from the call 3 weeks previously, it was literally sit and wait. I was not working at the time but had a love of puzzles and they occupied my time for what seemed like hours waiting for the call back.
The phone went and this time it was good news, I was to receive the kidney this time. I was literally shaking and rang my Auntie up as I had fallen out with my parents for not understanding my condition and being unsupportive. I was so excited, a rollercoaster of emotions and this feeling of hope that everything was going to be ok.
I packed up a small bag and off I went on the tube the short trip from Leytonstone to the Royal London Hospital in Whitechapel. I don’t remember a great deal about that day until later in the evening. I met with the surgical teams and was given some premedication. I didn’t sleep much but eventually was woken up and prepared for theatre.
I was incredibly nervous and apprehensive, I also felt very alone that no one was with me and no family was around. It was around 8am on 5th December 1995 and the porters came to take me to theatre. Then after 5 hours I was told by one of the staff members, I came around very dazed and a bit moody apparently. Which I always felt very guilty about, but I literally was very spaced out and was really confused.
The Emotion of it All
I had now had my kidney transplant and was taken back to the ward. I was in quite a bit of pain as I recall and kept falling sleep. I was very happy but also sad that it was just me here and I really needed someone with me at that time. The loneliness of it all was something I really struggled with, but somehow always kept my sense of humour and amused myself by writing sketches. A few days past and one of my friends came to see me who lived closest to me at the time. I was so happy and it was a much needed visit where I could just be myself and have a laugh with her.
After about 4 days I think it was many of the tubes, drain I think were removed and could not get out of bed. I went to the mirror in the bathroom and just burst into tears. I had colour back in my chubby cheeks and I visibly looked better if a little tired. A couple of days later I was allowed to go home and went through my medication with the nurses.
The New Normal
I drank copious amounts of water and took the medication at regular 12 hour intervals. Eventually after feeling better went off to my join mates on holiday the following year.
I also plucked up the courage to get back on stage, as I lost a lot of confidence over the previous two years. Getting up on stage and making people laugh was just the buzz I needed. Doing my impressions and comedy, something I was doing before the transplant. The funny thing is everyone assumed I was more nervous than I was due to shaking, that was more the medication than anything else.
I have been lucky enough to keep working for many years since the transplant. Going to college as I missed out on it because of not getting grades as I missed so much school. Starting a business making greeting cards with my voices inside, as well as self employment since the transplant. Whilst you still have an impairment as a transplant patient, you can enjoy life again away from the Dialysis machine. You can hear some of the voice work I have done on the right in the videos.
Over the 25 years that have followed since my transplant I have managed to do so much, thanks to my amazing donor. The staff at the Royal London Hospital & St Helier who mean so much to me. Here is a small glimpse at just some of what I have managed to do because or Organ Donation.
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