"As the phlebotomist turns round in the chair with her tourniquet, ready to take my blood, I instinctively lean to offer her my right arm. It’s been more than 23 years since I had my kidney transplant and almost as long since I had my defunct left-arm fistula tied off. But old habits die hard.
"Like most people I had my fistula created in my non-dominant arm. So being right-handed, it’s my right arm that bore the brunt of that legacy. Blood test? Right arm. Vaccination? Right arm. Cannula? Right arm. Blood pressure cuff? Right arm. You get used to it quickly when you’re on haemodialysis: your fistula arm is to be safeguarded for dialysis only, to be protected at all costs.
That left me with a complex mess of feelings about my fistula. On the one hand, it was my lifeline. It literally kept me alive for the two years I was a dialysis patient. But on the other hand, I had an absolute and unbridled hatred for it. And I was embarrassed by it. The twisting knot of blood vessels and scars were ugly and attracted stares and occasionally questions from strangers whenever my arm was bare.
"So I would try, probably unsuccessfully, to hide it. I developed a way of holding myself with my left arm bent inwards across my body – like you would if your arm was in a sling – because that way, the lumps and bumps were a little less obvious.
"There were people who were quick to remind me how lucky I was that I had the option of dialysis, the implication being that I should be grateful for my unsightly fistula. And I was. I understood that I’d be in quite a sticky spot without it, and while I waited to be called up for a transplant I had a lot of time to reflect on my ill health and mortality.
"I was only 17 when I was diagnosed with end-stage renal failure, and 19 when I needed dialysis. Having a fistula was just one of the many ways my illness was changing me and making me stand out from everyone else, at an age when all I wanted to do was fit in. I never talked to anyone about it either, partly for worry I’d be considered vain and partly for not wanting to draw more attention to my battle scars.
Looking back, it’s obvious I was struggling to come to terms with everything that was happening to me. The loathing I felt for my fistula was slightly misplaced fear about my health and my future, and whether I would ever have either again. Keeping all of that bottled inside was my way of coping, so I didn’t share those emotions, nor tell anyone I was scared of what being a kidney patient for the rest of my life meant.
"Now, in my 40s and with a bit of life and ill-health experience under my belt, I wish I could tell my teenaged self to not give herself such a hard time.
"It’s possible to be frightened of the future, grateful for the present, and self-conscious about how kidney disease has affected my body, all at the same time.
"I’d tell her it’s a really good idea to talk about it, if you can, with someone empathetic. Nowadays there are specialist renal counsellors and people more attuned to the deep psychological impact that being so ill, especially at such a young age, can have. I’d encourage my young self to seek that out, and not feel guilty about needing someone to lean on.
"In the past decades, I’ve slowly and sometimes painfully worked my way towards acceptance. I have now lived as longer with my transplanted kidney than I did without it, and my fistula, albeit now far less intrusive than it once was, played a part in getting me here. Rather than feeling shame at the scars and the bumps, I’m almost proud of my fistula and the journey we’ve been on.
Back in the phlebotomist’s cubicle, the woman who’s about to take my blood moves to tie her tourniquet around my left arm. She seems surprised when I stop her, instead gesturing my right arm.
It takes a minute to remember that, as the fistula was tied off all those years ago, my left arm no longer needs to be reserved for dialysis and protected at all costs. Even 23 years since I needed dialysis, the importance of vascular access remains at the forefront of my mind – such is the power my fistula holds to this day.
You should always follow your own medical team’s advice about managing your fistula, both when you are receiving haemodialysis treatment and after a transplant, as they will be able to offer you personalised advice.