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Clem's Story

by: 
Clem
Clem
receiving a kidney from my life-saving older brother Liam

I was born with ureter reflux; a common condition in babies that generally, in due course, resolves itself. My little brother had it. My dad had it. But I was that *lucky* one-in-a-hundred where things went wrong. Basically rather than my urine flowing from my kidneys into my bladder, mine went in reverse. The severity of my condition was not realised until it was too late. The urine built up in my kidneys to such an extent that by the time I was two and had surgery to re-implant my ureters to fix the problem, it was too late and my kidneys had been severely damaged. One kidney was stunted and never grew, the other had severe tissue scarring and damage and would never function as a healthy kidney. So I started my life with my kidney function in the 30-40% range and over the years it would slowly decrease by 1-2% per year. 

Despite this I had an exceedingly normal childhood. I mean this in the best way possible. I never felt different or weaker or sicker than anyone else and I never felt sorry for myself. It’s not like I was ignorant of my condition though. I always knew there was a problem with my kidneys and that I would eventually need a transplant. But I think I was lucky knowing this as a reality from a very young age as to some extent it played to my benefit. Because I never knew any different or felt anything different I had no reference point, except my own being, to base an understanding of ‘normal’.  The normal for me was myself inclusive of the kidney problem, there never existed a myself without it. And so in this sense I felt normal; it was my normal. I was always like this. This has always been the hardest part to explain.

It’s probably a good place to point out that although I knew a future transplant was a reality, it still never felt real because of how normal I felt. I know that’s a bit of a paradox but let me explain. I guess the only noticeable difference between me and the next kid growing up were the 6-month blood tests and specialist appointments I had to attend and the single white tablet I took each night before bed, Karvea. I know some people hate needles, but if you’ve been poked with them since birth you’d be surprised just how fast you become accustomed to it. Besides, I quite quickly caught on to the benefit of having these blood tests. Twice a year I would give my blood to the nurse who would give me a chocolate, and then I would get to go to the toy shop and get a new toy, normally lego. It was like having two extra birthdays each year! If anything, having a kidney problem made me more than normal – it made me a lucky kid! Of course as I got a bit older the chocolate and lego disappeared but by then the whole trauma of needles was well and truly gone. And as I got older still, and my kidney function decreased further, I felt no different from the people around me. I could do, and I did do, everything they were doing. All through primary school and high school I played sports. I played cricket, soccer and tennis. I loved to swim. I learnt to surf. I did all the school hikes and camps plus some. I learnt to play guitar and to sing. I composed my own music. After completing the HSC and getting accepted into a Law degree at ANU in Canberra I decided to defer for a year. I worked for six months to save up cash and then went travelling for four months. I visted my brother, Liam (a legend you will hear more of), in Japan, and then travelled across Europe and finished in the land of Liberty, NYC.

So that was my life from 1-19. Exceedingly normal and thankfully so. At the beginning of 2016 I moved to Canberra to start my  university studies at ANU. This is where things began to take a turn. I began to notice how lethargic I was feeling and my concentration levels in class were taking a severe hit. I put this down to just being busy. I was working 3-4 days a week and studying full-time. I think to some extent over the year of 2016 I became less social as I became more tired and had to exert much more energy than usual trying to concentrate and keep up with Uni. This was hard because  some of my friends did not really understand why all of a sudden I started going out less and hanging out with them. And I couldn’t really explain it because I did not really know what was going on myself at the time. It was kind of a tragic situation losing touch with mates because I could not communicate what was going on. It goes back to the fact that although I knew transplant was an inevitability I never believed it to be real. A belief only compounded by the fact that my specialists would never give me an exact date of when my transplant would be. I would always be told I was doing well and that it ‘could be in five years, could be in one or could be in 10!’

In January at the start of 2017 I visited my specialist, Dr. Stephen Chadban, at RPA in Sydney, and he told me that my function had dropped to 17% at the end of 2016 and had stayed at this level for this subsequent test (kidney function is normally a series of waves and troughs, and you average this – but two tests in a row at the same or similar level generally indicates where your function is at). Transplantation is more of an art than a science in its current state, ask any specialist or surgeon. To give you an idea, my function normally dropped 1-2% over a year, with some higher numbers and lower numbers scattered throughout, but the average descent was of 1-2%. However, over the span of 2016 my kidney function dropped around 11%, from 28% to 17%. Kidney transplants are normally conducted around the 10%-15% mark where possible. This meant Dr. Chadban finally told me I would have to have my transplant in 2017. Finally reality kicked in. Feelings of shock, nervousness and anticipation. As well as a realisation of why I had been feeling tired, lethargic and struggling to concentrate, which had made me become more introverted. It was a kind of light-bulb-on moment of realisation which brought a sense of relief that I think naturally comes from understanding what is wrong.

My two options were to have it in June in the four-week break between university semesters, or wait until the summer break. The second option raised the possibility of me having to go on dialysis if my levels dropped too low over the subsequent months. I opted to go for the pre-emptive transplant route. 

I never asked any of my family to give me a kidney. I could not bring myself to ask something like that of someone I love. But regardless, all of my immediate family came through for me, and in the end, it was Liam whose kidney turned out to be the best match. Nurses, doctors and friends were always asking me how I could ever pay my brother back. But they were missing the point. I think this is the number one misconception about transplants; that it is somehow a debt that has to be repaid. This is a fundamental misunderstanding of why people act and show compassion. He did not do it because he wanted to hold it over me, although he could. He did not do it so that he could chuck on his resumé, “livesaver”, although he could. Liam did it because he knew I would do the same. Liam did not do this so that I would owe him my life, although I do. He did it because he just wanted me to be me. He did it so that we could all move on with our lives. He is an inspiration to me, and should be to all. If there were more Liams in the world, it would truly be a better place.

After innumerable tests and meetings with doctors and specialists, I had my transplant on the 4th of July, just after my Semester 1 examinations, receiving a kidney from my life-saving older brother Liam. The surgery took place in Sydney at the Royal Prince Alfred Hospital. Initially, my recovery went really well. I had begun walking (or I should say hobbling) around my ward for short stints on the second day, and could shower (seated) by the third. On the fifth day I was discharged from the hospital with my new kidney and a plethora of drugs to boot. This was, apart from the excruciating pain, the most difficult part. I was given painkillers, anti-rejection drugs, immunosuppressants, steroids and supplements to counter the negative effects of the steroids. All of these drugs had their own side effects, and being a young person with a strong immune system, as well as never being on dialysis, those side effects hit me like a tonne of bricks. So after five days of being home, which at this point was a family friend’s in Sydney, and visiting the renal clinic every day at 7am for approximately 2-4 hours, I was re-admitted into the hospital for mysterious fevers that would appear at night and disappear in the morning, leaving me utterly exhausted until the next evening. Hence began the worst two weeks of this ordeal. I spent two weeks in a hospital bed, each night getting jabbed with needles when my temperature rose, in a vain attempt to find the source of the fevers. Eventually some red spots appeared on my skin, they were swabbed, and somehow had contracted a virus while locked away in a hospital room. You would think someone would be upset at this news, miraculously contracting a virus whilst in hospital, but at this point I was so exhausted and so tired, I simply laughed. Immediately I started a course of anti-viral drugs (yes, another drug) and my fevers were alleviated.

Despite all this, I count myself incredibly lucky. I have two beautiful brothers and an extensive family who all supported me throughout the entire ordeal. I had and still do have an amazing and caring team of specialists, doctors and nurses that kept me positive and always reminded me it was going to get better. I had also enrolled in International Law prior to the transplant for Semester 2, as I was adamant that I did not want to completely postpone my studies.  I am not a person that can spend a lot of time with nothing to do. I believed that mental stimulation would also be beneficial in my recovery, rather than letting the drugs turn my brain to mush. As well as getting back to study I began exercising as soon as possible, starting out with light walks and then, after three months or so, easing into running and weight training. I think exercise and mental stimulation combined to help me recover much quicker and to a stronger level than I thought possible. And at this point in time, 15 months out since my surgery, I feel the best I have felt since high school.

But in saying this, whilst I was in hospital I realised that there are so many who are not as fortunate as I in this respect. In particular, I became close with one man, who was receiving the second transplant of his life. He was weak and gaunt eyed but so hopeful for the future. He had been on the waiting list for nine years just hoping for the right transplant. He could not properly hold down a full-time job, he had not been able to socialise, as he had been exhausted and stuck having his blood pumped through a machine for hours on end, every second day for the last nine years. He had large scars up and down his arms where the permanent cannulas for the dialysis machine had been inserted. But through all this he could still put a smile on and be hopeful. And this is who we are, we are battlers and we only look to the future. We do not want to use our condition as an excuse, we do not want to be treated differently. We just want to be given the chance to live and to contribute like every other human being. 

Recipients of kidneys who do not have family members or friends with a matching kidney may have to be on dialysis for an exorbitant amount of time awaiting the right match. This is not the fault of the doctors or any other person. It is the fault of stigma and a lack of awareness. And this is what I hope to cure in my life time. People are afraid of donating a kidney or registering themselves on the deceased donor list. They are afraid because they do not have enough information about what it involves and how to do it. I want to remove the barriers to donors, such as those my brother faced, and I want to increase awareness of the life-saving benefits of donation. I want to show how the bravery and compassion of my brother has given me life and hope. Everyone has that power. Everyone can give this gift to someone.

Nicky Burton