Kidney recipients are brave and inspiring.  The following is an extract (used with permission) from the Autumn newsletter of Kidney Health New Zealand (www.kidney.co.nz). I am fortunate enough to know the specialists that helped this young man.  Admirable work – well done people.

Sam’s story (benefactor of the John Velvin Trust)

Hello, my name is Sam High. At the age of fifteen, I was diagnosed with chronic kidney disease. This particular kidney disease is unique to my family tree. It did seem however that the disease wasn’t prominent in my immediate family, but alas it had merely lain dormant seven generations and reawakened in me.

A visit to the doctor to treat a case of strep throat, which had begun to infect other parts of my body, identified the issue with my kidneys. I was fortunate enough to have caught the disease early on; this meant that measures could be taken to slow down progression of the disease. At this point in time I still had one hundred percent of my kidney function, but unfortunately, my disease was causing a steady decline in their performance. This was a hard thing to come to grips with, for both my family and myself. I was emotionally devastated, left with the feeling of being robbed of my golden years. Fortunately enough though, my kidneys were not deteriorating all that fast, giving the impression that there would be roughly twenty or maybe thirty years of life left in them. Although the deterioration of my kidneys was slow, it did have effects on my health.

I was definitely not the fit, young, healthy, sporting kid that I used to be, even gathering the energy to wake up in the morning was a task. This lack of energy took its toll on my schoolwork. Before the sickness, I had been one of the top students in my classes, but now I was struggling to keep up. I credit this mainly to missing about fifty precent of my classes due to sick days. In my last year dropping out was a definite consideration, but thanks to the support of my family and my school’s counsellor I was able to renegotiate a schedule that would work for me. Instead of six classes I would take three, much to the disapproval of higher ups and the three teachers of my dropped classes. This worked out well, the workload was a lot more manageable, and the empty slots gave me time to rest and study. I ended up achieving my goal of getting University Entrance, and surprisingly, only just missed out on achieving NCEA level three.

Despite the majority of my friends heading off to begin a new stage in their lives in the form of University, I had decided to stay in my hometown of Timaru yet another year. This decision was mainly due to my lack of health and my uncertainty in what career I wanted to pursue. Thankfully, I was able to achieve something out of this year, enrolling at the Aoraki Polytechnic for a Diploma in Information Systems Management course. This was a perfect fit for me on so many levels. Computer work wasn’t physically draining on my body, I had a good background in mathematics and art (two useful tools for programming), and I had always wanted deeper understanding of the inner workings of computers. I was enjoying studying again, even despite my deteriorating health. This could really be seen in my results, back performing at the top of my class again for the first time since I became sick.

Near the end of the year (for reasons unknown), my worst fear was beginning to come true. My latest tests were showing that my kidney function had started to decline rapidly, with a newly estimated life span of only a couple of months. This was one of the scariest moments to ever happen to me, I was in no way ready to handle something as life changing as this so early in my life. I was thrown into a state of depression, I hadn’t yet come to grips with my kidneys failing twenty years away, let alone a month or so away. My family and I had no plan of attack at this stage; we hadn’t had a reason to have a plan until now. My family went into overdrive letting all and any family know I needed a live kidney donor. I was surprised to find how many people put their hands up for me-not just family but also unexpected generosity of friends. This was an enlightening moment in my life and without these people’s love and support I would not have had the will to get through this dark era in my life. Despite the overwhelming generosity of my family and friends none of them appeared to have compatible blood types with me-a necessity for successful transplants. This meant that I would have dialysis. Dialysis works as an artificial kidney, cleansing your systems of the toxins that kidneys usually work to filter. It is possible for people to live on dialysis for long amounts of time, but it can be really degrading on your system. The plan for me was to go on dialysis temporarily while we tried to sort out a donor.

While all of this was happening I was still studying, with my exams only a few weeks away. Even though I felt and looked liked death I managed to complete the entire year of study, even putting off my dialysis surgery by a day so that I could complete my final exam. I felt like I was running out of donor options and was beginning to worry if I would ever find one, around this time one of the greatest moments in my life occurred. During a conversation between my Grandma and my Uncle Ross (who was living in England at the time) the topic came up about my situation. Without hesitation Ross decided to donate me one of his kidneys, a true testament to his character! Words can’t bring justice to the generosity of his decision, not only because he was giving me a kidney, but also the fact that he was willing to come all the way back from England to New Zealand to do it. He also needed to perform initial tests, which from what I heard were in no way as easy as getting the tests done here in New Zealand.

Unlike most people think, it is not possible to have a kidney transplant straight away after you have the donors consent. There is a large range of time consuming tests needed to be done to test the compatibility of the donor’s kidney with the recipient’s body. Ross and I were thankfully compatible! At this point, I would like to thank Sarah Armstrong, transplant coordinator at Christchurch Hospital; she coordinated all these tests at lightning speed. It ended up taking a couple of months instead of several months. Unfortunately, before all these tests had begun I had actually undergone the surgery to have a catheter inserted into my stomach area. This would allow me to drain a special fluid in and out of my body four times a day, acting as my artificial kidney. I felt as though I was walking dead, I wasn’t eating, when I did it wouldn’t stay down for long. I must have lost about 15kg while being sick-which for an already small guy made me look like a pasty, white twig. In all seriousness, I don’t remember a whole lot of my short time on dialysis; my brain was just mush I guess. I was lucky in that I was only on dialysis for about three months; some people are on it for what must seem like an eternity. For any of those people reading this in that situation my heart goes out to you and I wish you the best of luck.

Once all of the tests had been successful, a date was finally set for my kidney transplant. I can still remember every moment from the day of my transplant. It was an emotional rollercoaster; just writing about it brings back vivid emotions and feelings. I had been up all the night before, far too anxious, scared and upset to sleep, I was relieved my catheter would be taken out, and I was probably the most terrified that I have ever been in my life about the surgery. My surgery had been planned for 10am but was pushed back to 11am, and then was pushed back to 1pm, and then 3pm. The anxiety was so overwhelming I felt as though I was going to explode.

Ross first underwent his surgery to have one kidney removed, after which I would be called upon and brought to the surgery room. You know those moments when every second seems to take an hour; this was definitely one of those times, just wanting 3pm to hurry up so I could get it over with. The time finally came, I was told Ross’s surgery had gone perfectly and that I would be needed now. I remember getting on to the mobile bed and then being whisked away from my mum, waving right until I was dragged through the large hospital doors. Before the surgery I was literally shaking with fear, I couldn’t even talk. Luckily there were lovely nurses there to cover me in blankets and talk to me, helping to take my mind off what was about to happen. After a little while longer I was taken into the surgery room and after being injected with some anaesthetic I was out cold. It’s always a weird feeling for me waking up after a surgery, I’m always disorientated, confused, and still really groggy. Once I was able to maintain consciousness for longer than 10 seconds I was taken back to my room. Despite not being able to move, having tubes hanging out of everywhere, and the unbearable heat (it was honestly about 35°c in my room- it was torture!), I could already tell that I felt better, better than I had felt in years. It was obvious to others too, all of my family and friends who visited noticed that I had a new glow about me, I was no longer the white, pasty self that I had been for the last few years.

After six month of rest, rehabilitation, monitoring and some obstacles including: daily blood tests, the Christchurch earthquake, weekly trips to Christchurch to see specialists and having a stent removed through my urethra (makes my face cringe just saying it) I was all better and I moved down to Dunedin to continue studying. My diploma I had worked so hard to achieve counted towards the first year of a three-year degree in Information Technology. It was around this time that I was introduced to the Velvin Trust via an email from the Canterbury Kidney Society. There aren’t many groups like this about so I was extremely excited to try becoming involved in any way that I could. I applied to become a beneficiary of the Velvin Trust. It sounded as though it would be a perfect fit for me and my situation. I exchanged emails with the Trust and had a meeting with Carmel from the Kidney Health New Zealand, who assessed me to produce a report, which would be sent to the Trust. The Velvin Trust decided that I would be a great candidate for them, this was amazing news for me. I was lucky enough to meet the founders of the Trust, Sally Velvin and Doug Crombie who flew all the way from Wellington to come meet me personally at my house in Timaru. They are two of the nicest, most inspiring people I have met. They talked to me about how they had created the trust in honour of John Velvin (Husband to Sally and close friend) so that they could help out others who John would have empathised with, that are suffering from kidney disease. They also mentioned the advantages of being part of the Trust, which included: mentoring, business contacts, contacts of other kidney disease sufferers, and also potential monetary assistance. To date the Velvin Trust has helped me out with the contacts of people in similar situations to me, so that I can discuss things unique to people in our situation, and they have also offered to help support me further my education by helping to pay for courses/papers. I am truly grateful to be a beneficiary of the Velvin Trust, not just for the assistance that I can acquire from them, but also the fact that there is an organization out there that really cares and supports me- and people like me. It’s an uplifting feeling. I hope to one day be able to help and support people the way the Velvin Trust does-they are truly inspiring.

It is 2012 now; I am twenty turning twenty one this year. I was 19 when I went through both my dialysis and kidney surgeries. Ross is now living in New Zealand; he made a speedy recovery, leaving the hospital after three days. The human body is capable of living with only one kidney, more or less the same way as it does with two kidneys. This is certainly true for Ross, he was back out doing extreme sports and was back working again, only a short time after the surgery. I am also living life to the fullest with my one working kidney. I’m healthier and fitter than I have ever been. I have learnt a lot from my experience and have matured well beyond my years. I have finally got my life back and I am loving every second of it.

I would like to take this time to thank some important people:
My specialists: Dr Martin Searle, Dr Nick Cross, Dr John Irvine, Dr John Schollum, Prof Rob Walker

Sarah Armstrong, Kelly, Grandma, Grandad, Nana, Penny Coffey, Lesley Horsburgh, Christchurch Kidney Society, Graeme Cox Trust, John Velvin Trust.

Special thanks to:

Ross: You saved my life!

Mum: You worked overtime and then some to keep me alive.

Dad: I don’t know how but you’ve got a story to turn every negative situation positive.

Olivia (My sister): Your love meant the world to me.

Hannah (My girlfriend): You stayed with me through something tougher than any young couple should ever have to face.

For further information on the John Velvin trust go to http://www.kidneys.co.nz/John-Velvin-Trust/

Tagged: Chronic Kidney Disease, Kidney donors, kidney recipients