It’s very difficult to summarise 40 years of my life into this relatively short article but I will do my very best.
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I was born in February 1984, folded in half.
My mum tells me that all she knows is that at some point I did a somersault; and when it was time for me to come out, my legs were not quite where they should have been. I was immediately rushed into the children’s orthopaedic ward.
The following 4 years involved several surgeries to turn my legs back around and put them back together again.
Some time later, my parents were told that my kidneys were not functioning to their full capacity, and it was soon discovered that they had not grown properly either. I was referred to the renal department and began getting check ups in order to monitor my kidney function more closely.
I remember distinctly one of my checkups when I was aged 9, and we had recently just bought a new phone. And it had an answering machine on it, fancy eh. By the time we had got home from hospital, there was a message on there from the renal unit already, telling me to come straight back up to the hospital and go up to the ward as I needed to start dialysis immediately.
My kidneys had not grown at all and their function, the amount of toxins they were filtering out of my body, was alarmingly low.
For 3 years I received peritoneal dialysis via a tube in my stomach, for 8 hours every single night whilst I slept, or at least attempted to.
I was to miss several days from school due to infections or fluid overload. I would be in hospital for a couple of weeks on 12-15 hours of dialysis and antibiotics in order to remove the toxic build up in my body.
But, out of the blue, when I was 11, and about to leave primary school, I got the call for my very first transplant.
Now, we had already had 2 calls previously, one of which got us as far as me being on the hospital bed ready for surgery – only to be told it wasn’t going to be a good match. This time, everything went ahead, although not quite as planned. But then again, things were never straight forward when it came to me.
A patient needing emergency surgery came in right as I was about to go to the theatre. and delayed my transplant for several hours. Whilst my parents paced up and down the ward anxiously and spoke with our church minister, I was in the staff room on the computer, playing video games.
I had spent many sick days in my parents room, playing Pong and other great games on my dads Atari and Commodore 64. I remember my dad dragging this hulking great machine from my room to sit in the hallway, so that I could be attached for 15 hours whilst my friends were all outside playing.
My Transplant would last until I was nearly 20. My kidney function declined and on my 20th birthday, I started retraining to do dialysis again at home. This time the machine technology had moved on and had gotten smaller too. This automated PD machine fitted on top of a bedside table and came with its own suitcase for travelling with. Unfortunately, as was the previous case, when the fluids drained out of me, it was very painful and I hardly slept at all.
Ten months later, on December 22nd, I got the call again. As usual, we didn’t have high expectations and went along waiting to see if it was all going to go ahead; and again, my parents paced the room and I sat on my bed watching TV. It was Christmas after all and there were movies to be watched. As it turned out, the transplant went ahead at 6am the following morning. As far as I can remember, one of the first things I said when I came round from surgery was “So can I have my 21st birthday now?”.
I would go on to college to try and get my highers again; and eventually go out to work and have my own place to live. I was finally an adult. But that didn’t last long.
In 2010, aged 26 my kidney function again started to deteriorate. I was given high doses of steroids to try and combat the rejection but it just wasn’t enough. In October, I spent 2 weeks in hospital with a severe infection and was placed on a cocktail of antibiotics. I said to my doctors that I thought it was the kidney that was causing the problems, but who am I to know about my own body?
I eventually had a biopsy which revealed that there was very little live tissue left in my kidney; and that resulted in my having surgery to completely remove it altogether. Now, I’m not saying I’m smarter than my doctor all the time, but on that occasion … mm ..
Peritoneal dialysis was not going to be a viable option this time so I began haemodialysis straight away. I had surgery in February to have my fistula formed. This is where they attach a vein to an artery in order to get better blood flow for placing needles into. One needle goes into the vein and one into the artery, i.e. one for taking blood out and one for putting it back in again.
This is a much more intense kind of treatment, where the machine actually takes your blood out and cleans it through the machine several times over 4 hours. It’s also a much more dangerous kind of treatment. In the eleven years that were to follow, I lost two dear friends due to not being able to have their needles inserted properly, either due to a dying fistula or other reasons that I am not privy to. Within a matter of a couple of weeks, both succumbed to the toxicity in their bodies being too much, and passed away. Kidney disease kills.
April 2020, and 10 years into my haemodialysis journey, my parents had undergone training to be able to set up the machine, monitor my vitals and insert my needles into my arm and I was dialysing at home. Not having to get up at 6am 3 days a week, and travelling to and from the hospital for treatment, had given me a sense of freedom. I could manage my time much better. Being able to go out the house for the whole day and do my treatment in the evening, or have a weekend away (and not worry about rushing home to be at hospital at 6am) on a Monday was a joy.
However, the world had other plans. COVID came along and as someone in the highest level of vulnerability, I was confined to my bedroom for 12 weeks.
I was contacted by the hospital to say that the transplant list had been suspended. I had waited 10 years by now, what was another few months to me?
My parents were also confined to the house, they were not allowed to leave or interact with anyone, including their own grandchildren; and had to wear aprons, masks and gloves whilst doing my treatment or even leaving my food or drinks outside my bedroom. I wasn’t allowed to interact with them at any other points. Coordinated toilet breaks were arranged and for that initial 12 weeks, we persevered.
Finally a breather .. lockdown was lifted. I had one weekend where I was allowed to leave the house and jumped at the opportunity to go outside, but not for long.
A second lockdown was imminent and I remember sitting in my car in the driveway, crying, because I knew that if I went inside, I had no idea of if or when I would ever be able to leave again.
April 2021. My fistula arm had swollen up and was in alot of pain. We headed to the hospital and after many scans, it was discovered that my fistula (my lifeline and vital access to dialysis), had clotted off and was no longer working. I was taken to day surgery and a chest line was inserted, so that I could continue my treatment until a new fistula could be formed.
During that process, I unfortunately felt extreme discomfort and pain, which it is an experience that still lives with me today.
My parents had to retrain and learn how to use the chest line. One good thing about this meant there were no more needles.
July 2021. I had been inside the house for almost a year. Not even allowed to sit in my garden. Whilst the rest of the world was going back to work and getting on with their lives gradually.
The transplant list had been reinstated and I was active again, waiting.
On the 6th July, at 6am, I got a phone call from a private number.
I hung up.
The house phone rang and woke my mum but she didn’t quite answer in time.
A second call came through to my phone, and by this point I figured if it was important enough to call 3 times, I should probably answer.
It was the transplant coordinator for the hospital. I had almost missed “the call”.
As per our usual routine, I got ready and headed to the hospital with zero expectations, as this had been our second call for a transplant, with the first one not working out in my favour.
Due to COVID, my mum was not allowed into the ward with me and I went through the work up, bloods, scans, checks etc myself.
We both sat at the hospital all day, mum down in the lobby and myself in the ward, to wait for the decision on whether I was a match or not.
Organ donation is a complex process, with multiple factors being taken into consideration, some of which I still do not understand to this day. Tissue typing, blood group match and antibody levels (amongst other things) were all checked and processed by the hospital. The crossmatch with the donor was OK, and once all had been finalised, the donor kidney was transported to the hospital.
24 hours after the initial phone call, I called home to my parents to let them know the transplant was a match and that I was being taken to the theatre within the hour.
The surgery went well, although I did have a strange sense that I had been under anaesthesia for longer than I usually was. I found out afterwards that the transplant team actually had a hard time fitting the kidney into my stomach; due to me having so much scar tissue from all the previous surgeries and two transplants. I believe the words were “we had to dig a trench to fit it in”. I repeat, organ donation is a complex process.
My new kidney was in and functioning, producing urine, but at a slow rate. For 2 weeks after surgery, my legs were swollen from fluid overload, and I was still receiving dialysis to clean out the toxins. The kidney was not functioning as they had hoped.
Many scans and ultrasounds later, they discovered a clot had formed inside the kidney, and it had been blocking any chance of the kidney actually working properly.
I was back in theatre again where they attempted to remove the clot by going up through the main artery in my leg and into the kidney. Back on the ward and the kidney had started to function albeit still not to its full potential. There was a concern that the kidney had stopped working altogether because of the clot – and there was a chance it would not last.
My mum was called and special arrangements were made for her to come and visit me. I was in a very low slump, depressed and I just wanted them to take the kidney out, so I could go home. My leg was also sore from the surgery and felt like I had pins and needles at times, depending on where it was positioned.
Later that evening I got another scan done, my leg was still sore and had pins and needles, and I was starting to get the impression something was wrong. Turns out I was right.
I woke up in agony at 4am with no feeling in my leg whatsoever. I thought I had lost it.
I was rushed to the theatre where a vascular surgeon had been brought in to look at my leg and assess what the issue was. My artery had not healed properly from the initial surgery 2 days prior, and I was bleeding internally.
The scan had shown that another clot had formed, so a double surgery was needed to both fix and save my leg, and also have a last ditch attempt at saving the new kidney. I wanted them to save my leg.
I awoke from my very long surgery late in the evening, I remember being transported to the ICU for 24 hours of observation and IV antibiotics. My parents were allowed in and sat with me until 3am when I told them to leave. I went back to my room on the ward the next day, doped up to my eyeballs with antibiotics and pain relief.
Drugs are wonderful but I was experiencing hallucinations and was barely sleeping. I asked to be removed from the pain meds and after a couple of nights, the issues had stopped. And I finally managed to sleep, pain free.
One week later, with the kidney now fully functioning and producing urine normally, I was taken off all meds and my transplant immunosuppressants were the only things I was taking.
I had now been in for over 3 weeks and was finally starting to feel like myself.
My legs had stopped swelling, I was able to get physiotherapy to regain the strength in my leg and begin walking again; and a drain (with bag attached) into my kidney. The kidney was removing excess fluid, i.e. was doing its job. I was on the home stretch.
The start of week 4, now the beginning of August, I was allowed home for the night, only to return the next morning to have my drainage bag removed. Now by this point you are probably reading this wondering what is about to go wrong now?
Well, the drain itself had vanished. It had managed to be consumed by my stomach and was no longer on the outside. More surgery was needed to fetch the drain and remove it.
I was completely reopened again and the fishing expedition was successful.
I went home 2 days later, and after 24 days in a row, then a further 2 days afterwards, it was the longest stint in hospital I had ever had. It was also the most traumatic and physically demanding kidney journey I had had..
I am now 3 years post transplant and I still get side effects from the 4 surgeries I went through. My leg still gets tingles occasionally and there are numb parts on my skin. The side of my transplant goes numb, down my back and leg, due to the amount of bruising and scarring I had. I still struggle to walk and have to use a wheelchair occasionally to get around, something I’ve not had to rely on quite as much as I do now. Leaving the house now takes more planning and organisation than before. I am still in recovery.
But this kidney saved my life.
No, it is not a cure, and in fact it is more commonly known or accepted as a better form of treatment for Chronic Kidney Disease as you will never fully recover. A transplant only lasts so long, the medication can only do so much. In fact some younger kidney patients sometimes require 2 or 3 or more transplants in their lifetime, which is why organ donation is so important. There are simply not enough organ donors to cover the amount of transplants needed every year.
I am forever grateful to the 3 human beings who chose to be organ donors in order for me to survive, and I will be forever grateful to all of you human beings who have chosen to be organ donors so that you too could save someone’s life one day. It is not something that should be taken for granted and the decision should be taken seriously, discussing it with your family and friends so that they know your wishes too as organ donation is a complex process.
My story is not a tragedy, it is a success story. It is not designed to put anyone off, but it is the reality for some patients. The fact of the matter is that 3 years on, 15 years after starting dialysis again, I am now fully in recovery, I am involved with 2 Kidney Charities, helping to fundraise for vital research, I am also part of the social media team here on CKD Explained [“thanks so much for all of your work by the way” CKDEx Ed] and now I am finally able to actively live my life as much as I possibly can, and that is what Organ Donation does. It gives us back our lives.
Last Reviewed on 22 September 2024