Kidney Research UK

https://kidneyresearchuk.org

My Story by George

Due to steroids, my face changed to a “moon face” (a round shape with chubby cheeks), and also my growth was affected too. For a few years, I was in and out of CCH, sometimes for minor things, sometimes more serious like septicaemia. After a while, I was transferred to Great Ormond Street Hospital, so from the age of four, I ended up leaving GOSH at nineteen, a year later than their limit age.

Not long after, I had a kidney biopsy performed by a young doctor who gave me 1 mg of morphine, which led me to have a seriously bad reaction. I was asking to be stabbed and to plan my funeral. And how I wanted to be buried in the garden. I was telling Mum to give my bedroom to my sister (18 months younger). I was throwing things everywhere. I tore the foil bowl that was kept by the bedside for vomit with my teeth. I acted like a wild animal. This went on from 2 pm until midnight.

At the age of 13, I was put on hemofiltration; I had blown up like a balloon. This was such a painful time; my whole body was swollen, just about being able to bend my joints. Walking 5 paces was so tiring and painful, not only because of not being able to bend my joints, but also my testicles were obscenely swollen. Through the whole hemofiltration procedure, 60 liters of fluid were filtered out of me, which flipped me to the complete opposite, becoming super skinny. GOSH became a second home… The Good, The Bad & The Ugly.

I had the classic Nephrotic syndrome, though, which meant no matter what I was given, it would make no difference. After years on steroids, I was given Levamisole, but no luck. Then I was put on Cyclosporine, and no luck either. I had a bilateral Nephrectomy (removal of both kidneys) on the 20th of April 1994 at the Royal Free. This resulted in having 20 staples put in on either side of me… so uncomfortable and barely able to move. Dialysis was four hours every other day. I was on a 500ml fluid intake limit per day.

From September 1993, when I deteriorated until July 1994, I didn’t attend school. Dad donated his kidney as, at that time, my mum was not a match. They put me to sleep, and four hours later, I was in the special unit for after transplant. There were a lot of medical staff in and out of my room, and lots of different machines around my room. For twenty-four hours, all was well, one liter of fluid going in, one liter going out, then less and less. More diuretics and frusemide going in my lines, but still not happening. The doctors at GOSH found there were two cases in Germany and one in France like me, with the only difference being they had had plasma exchange. One of them died, and two of them survived. This was a decision my family had to make whether or not I should have the plasma exchange.

One night, in the early hours, I was lying there in so much pain, crying to myself that I wanted to get out of the place. I had just had enough of everything. I was saying to myself, if I had a gun, I would have used it on myself. One of the nurses came in and asked me if I wanted something to help me sleep. I said, “Yeah, anything,” secretly wishing she’d make a mistake with the dose, and I would never wake up again. I ended up having the plasma exchange, what an experience… serious shakes were happening. After I finished the plasma exchange course, I was discharged. I would still go for my dialysis, though.

About a week after I was discharged, I noticed a few drops of wee, which I hadn’t seen since the nephrectomy. The following day, 10 mls; the next day, 20 mls; and by a week later, I was weeing almost normally. From the age of 17 to 19, I was given growth hormone injections, which I learned to do myself. I carried on being seen at Great Ormond Street until the age of nineteen when I finished the growth hormone treatment. At this age now, I am considered an adult, and I had to find another hospital, which ended up being The Royal Free.

Until the age of 25, everything was great. I went in for a kidney biopsy but was left with a blood clot that had to be removed through keyhole; the clot was blocking my urethra, caused by the doctor putting the biopsy needle in the wrong place. After a while, I healed up, and all was great until 2018 when kidney transplant number 2 was on the cards. This is where I got to see firsthand how through Kidney Research UK medicine had advanced. My mum was able to donate her kidney.

• 9th of March, I got admitted to have my first-ever fistula done. It was a pretty strange, painless experience being awake and feeling all that prodding going on in your arm and every now and again catching a glimpse of what was happening in the surgeon’s glasses. Imagine the Terminator opening his arm up; that’s what I was looking at.
• 16th of March, we came in for the surgeons to check the fistula. Unfortunately, it didn’t work. In a way, I was relieved, though, because I know how people’s arms look after they have needles inserted for dialysis, and I didn’t want my arms to look like that, all bruised up and scared.
• 17th of April was the first appointment with Wendy. She went through everything about the food plan and what will be happening down the line, very thoroughly. She really made me feel at ease, the first time someone had managed to do that in a long time.
• 3rd of May, I was admitted to have my tesio line put in. I felt relaxed until they told me I would be awake during the procedure. Well, that started triggering all sorts of things in my mind. Time to go down, went in and lay down, and my whole body started to shake. The surgeon injected things to numb the area and made the first cut. Then it all started. I could feel all sorts of things being tugged and pulled. My body started shaking more and more. She said, “If you keep shaking, we will have to stop.” I gritted my teeth and told her to carry on. “Do it one time and finish. I’m not going through this again.” Awful experience.
• 4th of May, started dialysis (Mondays, Wednesdays, and Fridays) at West Middlesex Hospital (out of convenience). The sessions started at 2 hours then eventually went up to 3 hours. The team there is amazing and completely put me at ease with everything.
• 11th of May, started to get a really bad headache during dialysis. This lasted right through the weekend. It was a pressure in my head that I’d never experienced before. Extremely painful, and the constant vomiting didn’t help. These headaches and vomiting would mostly come and occasionally go all the way until July. All the pain from various other things I’ve had in my life, nothing has ever compared to these headaches.
• I can’t exactly remember the date, but sometime between the 6th and the 8th of July, I end up back in the hospital with a headache. I stayed in.
• 9th of July, time to have Campath in preparation for the transplant. I had a reaction to this, but nonetheless, I discharged myself. What a mistake that was because the following day, I ended up back in the hospital.
• 10th of July, got admitted to the hospital because of still feeling lousy. They also discovered that I had an infection. From this day onwards, it was touch and go if I was going to be able to have my transplant on the 18th of July. By the end of the week, the decision was made for the transplant to go ahead.
• 18th of July, transplant day. To be honest, there were no feelings, just go in and get it done. Mum went in first pretty early on in the morning. Then after a few hours, I walked down to the theater, lay on the bed, got knocked out, and woke up on the ward.
• 21st, managed to get out of bed. It was surprising how there wasn’t the pain that I expected, just a bit of discomfort. Having a catheter didn’t help. Also, on that day, I was told that I was the 2000th transplant patient. That was a surreal moment, what an achievement for the team.
• From then until September/October, I was still in the hospital having plasma exchanges as precautionary measures to fend off the FSGS.

So, from me going through all this since the age of 2, it has made me want to give something back to all the hard work Kidney Research UK is doing.