Wish you were here! Kidney failure, travel and me
by Joe Rumney, RARE Revolution
Joe shares his experiences with travel through childhood and adulthood, while living with kidney failure and a rare disease called cystinosis
Travel in childhood
As a life-long member of the rare disease club, going on holiday has always been a massive hurdle for me. Looking back over my childhood, I remember feeling out of place during conversations between my classmates about upcoming summer holidays. Not because I didn’t have the chance to travel, but my experiences were never quite the same picture-postcard scene as theirs.
From a very young age, I lived with chronic kidney failure caused by Fanconi syndrome, a symptom of my rare disease, cystinosis. And because of this, even a simple school trip was a challenge. I remember more times than seems plausible, stepping one foot out of the coach doors and immediately being sick at the feet of a teaching assistant. This happened every single time we arrived back at the school gates. Being away from the safety net of home, even for one day with, frankly ill-equipped teachers, meant countless times I was often not given the time or care I needed, until I was old enough to take control myself. Cystinosis controlled my life for a long time—the medication, the sickness, the fatigue. It’s no surprise that travelling required extra consideration.
Outside of school, my family’s summer holiday prep would start firmly on the ground. Weeks before, my parents would spread pages and pages of health insurance forms across the dining room table, double-checking my medical history and making sure the relevant boxes were ticked. Fortunately, I never needed emergency treatment.
The airport was no less stressful, but luckily my mum always took her role as self-appointed pharmacist incredibly seriously. So, if customs ever raised an eyebrow at our bulging suitcases of pills, she could very smugly hand over the laminated list of medications she had prepared earlier. Now, imagine dragging all that extra baggage—quite literally—to another country where everything is different, including healthcare.
Despite all of this, I was fortunate to visit places including the Canary Islands, France, Italy and Turkey. The preparation to get me there was extensive, and many of those days were spent unwell on the sofa and sheltering from the harsh sun, but those moments were intercut with good times too. I remember the grilled sardines, the kids’ clubs and my mum constantly bellowing, “Joe! Are you drinking enough water?”
Travel with dialysis
After years of declining kidney function, my first kidney transplant marked the end of my childhood. And while this changed my life for the better, this transplant didn’t last as long as I had hoped for. Now, a peritoneal dialysis machine, which I lovingly call ‘Clara’, helps to filter waste from my blood instead.
As you can probably imagine, travel has dwindled since my last holiday abroad a decade ago. The two factors that I find the hardest are, first, the unclear future, and second, travel restrictions. I could leave the country in theory, but as I’m on the deceased kidney donor waiting list, I would be suspended when I did. I would be rigid with anxiety anyway.
For now, travel is limited to my home country, England, which like before, demands serious planning. Travelling light is not an option. Not only do I have to take my medications with me, but I also have to bring ‘Clara’ along for the ride, including all the attachments, bags of fluid and importantly, cleaning supplies, as the thought of infection stays with me.
Even though the spontaneity is now impossible, I’ve still managed to have short breaks in the Peak District, Devon and London. With the right adjustments, I’ve been able to live like anyone else. Travel for me hasn’t disappeared completely—it’s just been reshaped.
“I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.” – Jimmy Dean
