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Part two of Jim Stevens’ experiences as a transplant recipient

4 September 2019

To mark National Organ Donation Week, Jim Stevens, VH Bio’s molecular biology field application specialist, has been writing about his experiences as a transplant recipient. If you need to catch up, you can read part one of his blog here – in part two, he talks about the tests he underwent in the build-up to the transplant,

“Although I was confident that I wouldn’t need to dialyse I had opted down the peritoneal dialysis route. Peritoneal dialysis (PD) is a treatment that uses the lining of your abdomen, called your peritoneum, plus a cleaning solution to clean your blood. The solution absorbs waste and fluid from your blood, using your peritoneum as a filter. This involves a tube being inserted into your stomach which obviously requires surgery, in order that they fill your peritoneal cavity with fluid, drain it of this fluid and then refill it again. I was due for my surgery in May 2013. Prior to the surgery, they had asked me to come in for a clerking, where they take blood, check your blood pressure and do an ECG.

Information overload

“You get so many letters from the hospital, with much of the same information in that you start to only read the important part in bold: where and when you need to turn up! I made a note of the date of the surgery and arranged with work to take the day off, but had missed the information regarding the time of the clerking.

“It was due on a Thursday and on the Wednesday night prior, a group of us from AZ went round for a film night and takeaway at a colleague’s house in south Manchester. As usual, everyone was a little late (not me!) and so I had some southern fried chicken with a few beers. I hadn’t realised I was due in the hospital the next day for my clerking, and as I was late to bed, I was also late to rise! I had to rush into work to make my 9.30am meeting, without eating nor drinking anything. I was working on quite an exciting project at the time whereby I was looking for biomarkers for cancer types, by staining the microscope slides with fluorescent probes; a technique known as FISH (fluorescent in situ hybridization).  I liked the techniques and the results involved with FISH, but mostly I enjoyed the endless oppor-tuna-ty for fish puns!

“After the meeting, I had to rush to the lab.  The laboratory process to prepare FISH slides is two days. I was on day one and I was in the middle of washing some slides with some fluorescence stain when my phone was ringing. It was the hospital on the phone asking if I was coming in. Whoops, I thought, and I then raced to North Staffordshire Hospital to have my clerking before racing back to work to continue my lab work. At this stage I was feeling rather thirsty as I still hadn’t had chance to have a drink.

The results are in

“Fast forward to mid-morning the next day, my FISH slides were complete, and I was about to look at the results when my phone rang again. It was the hospital again. They were asking me to come in. “No, no, no,” I said. “I came yesterday and my surgery is not due until the next week.”

“A nurse called Rosalin told me that my blood results were back and the urea level in my blood was at 67.  “Great,” I say; “67, is that good? What should it be?” “No higher than 6,” came the reply.

““Oh”, I thought… “but I need to look down a microscope and count red and green spots!”

“I went into Hospital that Friday in May and was closely monitored. They put me on a drip and my blood urea levels came down. The combination of the beer with fried chicken and nothing to drink the following day had concentrated my blood. Once I was hydrated the numbers improved, but were still awful and I spent the weekend in and out of hospital on ward leave. I was being monitored to see if they would need to do an intervention, whereby they put a line in the large vein in your neck so that they can put you on haemodialysis. I was due for my peritoneal catheter insertion on the Tuesday so the idea was to put that in as planned and then give me gentle, low volume dialysis using that. You are supposed to wait several weeks before using the peritoneal catheter so you can recover from the surgery, as it happened I never got my surgery due to emergencies on the day I think. In the end I had the line inserted in my neck and started Haemodialysis, something I wasn’t prepared for.

Primary donor candidate

“My father wanted to be worked up as the primary donor candidate, which he was, although it did take a long time. As this process was taking place before I started on dialysis and the expectation was that I would have a transplant before needing dialysis I hadn’t really given dialysis serious thought, especially haemodialysis. Seeing the other patients in the hospital ward all on dialysis was disturbing, they all looked really poorly, and I couldn’t visualise myself like that, nor wanted to.

“The patients who are established on dialysis and travel to the wards are in much better, although not good, health but you only see the really sick people on the ward. When I went on to haemodialysis myself I had the realisation that I was not in control, nor had I been in control for some time which was emotionally difficult. At the time the dialysis machine seemed very much like a dementor from Harry Potter, I really didn’t want to have my life sucked out by it, however it really wasn’t as bad as it looked from the outside.

“Over the next few months, I got my peritoneal catheter insertion, although in the end peritoneal dialysis did not work very well for me so I also had a fistula put in and moved over to haemodialysis.  I had a haemodialysis machine installed in my home and did my own dialysis, which takes some time to learn. The hardest part was needling yourself!

“Throughout this entire time the support, the care and treatment I received by the NHS staff at the Royal Stoke Hospital was brilliant, even when I wasn’t the best patient.  I will always be very grateful for the care I received.

The successful transplant

“It was two weeks before Christmas 2014 when I went in for a transplant operation.  My father had been deemed fit to donate and after the official and ethical processes were complete (The Human Tissue Authority have to be satisfied that I wasn’t paying someone to donate me an organ) we went to the Manchester Royal Infirmary for the operation.

“My father went in for surgery first and I tried to not think about it as much as possible by watching films in my hospital bed. I think my wife at my side did all the worrying for me. Before I went down my father’s surgeon came to see me and to tell me that the procedure had been a success, he had a photo of the kidney on his phone as well, it was surrounded in grizzly fat and wasn’t pleasant looking. Importantly, my father was sleeping off the anaesthetic in recovery and all had gone well.

“It was then my turn to go down for surgery, which from my point of view is very simple as you’re wheeled into a room and given an injection to put you off to sleep.  Next thing you know is waking up in recovery, with many tubes coming out of you from various places and an incredibly dry mouth.

“My father went home after a few days in the hospital with no complications and I was out within a week and back home for Christmas.  I did have to return to the hospital several times a week to begin with, but I had no real or unexpected complications and recovered nicely.  The dialysis machine disappeared, my drugs changed and reduced (I now only take nine tablets a day) and life went on much easier without the tethering of the dialysis. You cannot do contact sports as you may lose the kidney so my rugby days are behind me and I have to avoid grapefruit juice so my medications aren’t negatively affected, but other than my surgical scars, bumps and lumps, you wouldn’t really know that I had had kidney failure. I have a reoccurring disease and I could still reject the kidney so more dialysis is quite likely in my future, but for now, I’m making hay while the sun shines.

Joining VH Bio

“In 2013 I was made redundant from Astrazeneca and worked for a short while as a molecular diagnostic development scientist for Qiagen in Manchester before starting my role at VH Bio.  I had used several VH Bio Molecular Biology products in my role as a Scientist and so was familiar with them although I didn’t know that the bulk of their business was Tissue Typing and Transplant Diagnostics. Although I don’t do any work with the Transplantation side of the business it is very close to my heart/kidney.

“All in all, kidney failure for me was manageable due to the support from my wife and extended family, and of course the brilliance of the NHS staff. In particular the nurses. It was tough on the people around me, having to watch my disease progress and pick up the parts of everyday life I was unable to do.  Dialysis was okay in the end and wasn’t as bad as it first seemed, life, however, is much, much better without it.

“Thank you, Dad!”

We are very grateful to Jim for sharing his experiences with us on this blog.

Click here for more information about Organ Donation in the UK. A sponsored walk is taking place in London to mark Organ Donation Week 2019. You can find out more about it here.

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