Stephen
When I finally started dialysis, I felt unsupported. I felt like I didn’t belong there. I was much younger than everyone else. I remember how huge the needle was.
When I was a child, I remember often hearing that in 1977, my Pop – my grandfather, my hero – had a kidney transplant. I always remember the reference to his transplant, but didn’t know at the time that it was because he had polycystic kidney disease. As a child I didn’t understand that my Mum had the same illness, that it was hereditary and that I could potentially have it too.
In my teens, Mum started to mention polycystic kidney disease a bit more, usually in passing. I think she was trying to prepare my sister and I that we would need to get tested at some point.
So in my 20s, I had the ultrasound scan. To me, I was just ticking the box. My sister went first. Didn’t have it. I went next, a couple of weeks later. I wasn’t worried as I waited for the result in the doctor's office.
I waited for a long time. I remember thinking about what was going on at work, or whatever, and then I was handed an envelope. No explanation – I was just handed an envelope by a member of the admin staff. I thought, “Oh, well, I’d better look. I wonder if I’ve got it, or not”. There was a sense of anticipation, but I still wasn’t worried. It was almost a bit exciting.
I certainly wasn't prepared for what I read as I sat in this waiting room, alone. I opened the envelope, and remember very clearly scanning through a lot of medical jargon, a lot of numbers, and then the words ‘consistent with polycystic kidney disease’. Everything froze.
I was shocked at first. Shock quickly manifested into fear. I called my Mum and she was upset. I’m a parent now and better understand how she must have felt – I think there was a lot of guilt initially, because she could see how scared I was. I told my partner. We were at a loss.
When I next saw my GP, I was given my first referral to a nephrologist. I had so many questions. What did it mean for my future? How would it play out? I had this real fear of mortality that came with the diagnosis. The doctors kept telling me they couldn’t cure this, couldn’t stop it . They told me to not try to control it. That it would be an issue way down the track.
I found that concept really, really hard. But then I got to a point, as I understood more and more about it, and understood where I was in my progression, where I was able to just put it to the back of my mind for many, many years. I was a young guy with great friends and family, a job I loved and bright prospects. I didn’t see that I was any different to the friends around me looking ahead to their futures too.
I'd have an annual checkup with a nephrologist, which included bloodwork and that's where I learned about creatinine. Then I actually started tracking it myself on a spreadsheet, adding new data points every year. As I was approaching 38 – by this time, living interstate with my wife and our young kids – I could see the dipping line sharpening a little bit. At the same time, I noticed that the conversation and tone of my doctors became a bit more serious, more urgent.
I had many moments where I'd come out of those medical appointments, catching my breath in the car and just sitting there in the car park crying as I processed the latest news. I started to realise that my crunch point was coming sooner than I and everyone else had expected. My kidney function was decreasing rapidly. The frequency of my visits to the doctor increased. I was only 38.
Physically, I was quite bloated through my stomach. Many people didn’t understand what was happening, saying insensitive things like, “You have to stop drinking so many beers mate!” Little did they know what was actually going on. I became very self-conscious about my body for the first time ever. I would carefully choose what to wear, even down to colours as I tried to find ones that would help me appear slimmer.
The physical symptoms got worse. I started experiencing severe fatigue. I would come home from work and literally just pass out on the couch as family life went on around me. I was peeling myself out of bed in the morning.
My social life started to change. I got push-back from mates when I said I wasn’t drinking. I felt I had to explain the reason why and that it was a really difficult time for me, my wife and our two young boys.
Eventually, in late 2021, it got to the stage when I was asking my doctor when I could start dialysis.
I needed relief. I wasn't really coping emotionally or physically and it was having an impact on my family I really struggled with the fact that I had to get sicker before the doctors could do anything to help me – because of the nature of polycystic kidney disease, there's nothing you can do until your kidneys have failed or are a long way towards failing.
When I finally started dialysis, I felt unsupported. I felt like I didn’t belong there. I was much younger than everyone else. I remember how huge the needle was. There were a few times where I almost passed out, and didn't understand why, and they were quite scary moments. I was freezing cold the first time I went. No one told me to bring a blanket.
Over time, though, I built connections with the nurses and learned who the best needlers were. I had to consciously choose to have a positive mindset. It was tough. I knew eventually I would get a transplant from a deceased donor; I just had to stick it out on dialysis until then, doing the early mornings, three times a week, trying to manage my work and life admin while I was hooked up.
Then one day in February 2022 I got a message from my cousin, Sally. “Hey - wanted to check in. I know you've been going through a really tough time, and I wanted to let you know that if it came down to me donating a kidney to you, I would really like to do it.”
I’ve always been close with Sal. She's a rock. Solid values, driven, kind-hearted and an energetic force-of-nature. But this was something else.
I replied, "I love you – thank you. You're too kind. But don't be silly!” She came back saying, “No, no, no, no, I'm serious. I've spoken to Rob [her husband] and I've got a rough idea of what to do. I’m serious”.
What followed was almost six months of comprehensive testing for both Sally and I, before we got to the point where everything had been checked out. We were a near-perfect match. Slowly, the possibility was getting closer.
But I knew I had to protect myself from getting too excited and hopeful. I knew if something happened for either of us, it may not pan out.
So, dialysis continued. I'd be obsessed with the fact that this machine was keeping me alive and how dependent I was on it.
Finally, eight months after Sally’s initial message, the surgery date was scheduled.
There are no words to describe how I felt leaving my last dialysis session before surgery. I just remember quietly, not wanting to make a big scene, grabbing the nurses’ hands, looking them in the eye and saying, “thank you”. They wished me luck, telling me warmly, “We don't want to see you here again”.
The night before my operation I was in hospital and I felt a sense of peace I hadn’t had in a long time. It wasn't a celebration or anything. It was just like – I've done this, I’ve gotten this far and now I need to hold on. Sally and I had a chance to see each other and marvel together at what was about to happen.
In the morning, Sally went in for her surgery first. As I waited, the nurses kept me up to date on how she was doing.
“They're taking her kidney out at the moment. She's fine”, they kept on reassuring me. I was prepped and wheeled into surgery in the early afternoon. The next thing I remember was waking up after it was done. The first thing I did was ask about Sally. I remember my relief at hearing she was OK.
The surgery went very well, but I had intense pain for the next few days. They took me off painkillers and that's when it got really, really hard. I couldn't move. I couldn't really walk. I had tubes and pipes coming out of everywhere.
What surprised me most as I recovered was the huge mental comedown after the transplant. Everyone is celebrating you, thinking it's over, whereas you feel like it's the start of a whole other journey.
I was really up and down after that. My numbers weren’t quite right but the doctors didn't seem too concerned. I was searching for answers, but then I learned a really big lesson - again, around releasing control. I needed to know I could trust the people caring for me, but it was also important that I knew enough about what was going on to start asking the right questions.
Six or seven weeks after my transplant, when I was past some of the biggest challenges of my recovery, I felt things shift for me emotionally. I had this overwhelming sense of gratitude to my doctors, to Sally, to my wife, to my boys, to everyone.
After the removal of my stent, I had my freedom back, for the first time in a long time. I returned to work and started to get back into activities and hobbies. The best part was having time and energy back for my family.
Overall, I have had so many learnings from my experiences.
One is about my connections with others. While there were friends who weren’t ‘in the trenches’ with me as I’d hoped, there were other people who really stepped up to support us. Though it was an upsetting learning at the time, it’s been valuable to better understand the value of community, in the good times and the tough ones. For that, I’m grateful.
Another lesson has been understanding my own strength, resilience and tenacity. This is without doubt the toughest thing I’ve been through – and I survived it.
One of the reasons I wanted to share my story is because I wish I’d had someone – a younger renal patient – that I could have talked to openly and honestly when I was facing this challenge. Maybe that would have quelled some of that fear and anxiety that I felt for all those years. My Mum was an amazing support, but our journeys were different and we were at different life stages when going through them.
I feel proud of myself that I've been able to get through something so intense and come out the other side with a good attitude. I have an urge now to help other people by being vulnerable, honest and open about sharing my journey and the things I’ve learned because of it.
