Calciphylaxis – the rare condition which left me bed-bound for nine months
A man from Derby had to push himself through intense physio to sit up and walk again, after spending nine months bed-bound in hospital, due to a rare and severe condition called calciphylaxis.
Kev Hill developed calciphylaxis in 2021. The condition causes painful skin sores that are prone to serious infection. Calciphylaxis happens when calcium builds up in the small blood vessels in and around the skin, blocking the flow of blood.
Kev says: “It’s impossible to explain how painful it is. I can only liken it to having lava poured into my bones or a thousand bullet ants biting me. I couldn’t escape. I’d wake up crying because the pain was so intense. I bled profusely, had endless infections and experienced muscle atrophy.
“I’m married with four children and they didn’t know if I’d live or die. Most weeks doctors would tell them to say their goodbyes because they didn’t think I would make it. The whole family has a shared trauma and it is still profoundly affecting our lives today.
“At the beginning of my treatment, even experienced doctors had never heard of calciphylaxis. With a better understanding, some of what I’ve gone through could have been avoided. I want to raise awareness so patients can be diagnosed more quickly in future. There is still a lot to learn and lots of research that needs to be done.”
The impact of calciphylaxis
There is currently no specific treatment for calciphylaxis, but steps can be taken to address underlying risk factors, manage pain, and treat or prevent infections.
Kev says: “Doctors were doing their best with the knowledge they had of my condition at the time, but I was in agony. I was being treated with regular bandages which would stick to my skin.
“Calciphylaxis opens you up to infections and it was like I was ticking them all off. I had infection after infection, including things like sepsis. I ended up staying in hospital for a whole year. I had muscle atrophy, where my muscles were wasting away.
“Every day was touch and go whether I’d survive. I’m a Christian and had people praying for me. There were occasions where I’d bleed profusely from my legs and doctors were unable to stop it. I had five pints of blood over one weekend after losing about half of my blood. It was a desperate time.
“It got to the point where my children didn’t want to visit because they were afraid of what might happen, and they didn’t want to see me in the state I was in. That broke me that it was affecting them so deeply.
“We were heavily impacted financially too. My condition meant I wasn’t able to continue my work as a self-employed life coach and trainer. For my wife, she had to stop working in a nursery to become my full-time carer. It has been extremely difficult.”
Leaving hospital
It took nine months for Kev’s wounds to begin to heal. He could then focus on his recovery, having physio and treatment at the would clinic.
Kev says: “I’m thankful to my consultant for making time to find out about calciphylaxis and helping me. Having been bed-bound, I had to push myself hard to leave hospital. I built up my strength, spending hours practicing to sit up and re-learning to walk.
“I’d promised my youngest daughter I’d take her to the Women’s Football European Championships in the summer of 2022, and that was my big motivation. We’d given her tickets for her birthday and I wasn’t going to let her down. I was given a wheelchair and made it to the game for a day out of hospital.
“A few months later, I was discharged from hospital. Everyone was in tears. It was surreal, as I didn’t know for a long time whether I’d ever leave alive.”
Lasting impact
Since leaving hospital in 2022, Kev has had to work hard on his recovery.
Kev says: “Walking a mile is like running a marathon. I’d like to start working again, but I experience a lot of fatigue because of everything I’ve been through. Some people collect stamps or coins but I seem to collect super rare conditions. My kidney function has improved, but has not returned to its previous level. I’m monitored by a renal consultant and still need a lot of support from my family.
“I’ve got massive scars on my legs and big chunks missing because of the calciphylaxis and muscle atrophy. I use creams and bio oils to try and reduce the scarring as much as possible, but I don’t have my beach legs anymore! I’d love to be able to swim again but am medically unable to.”
Kev now spends his time sharing his experiences to raise awareness of calciphylaxis, speaking at conferences, appearing in media, and even publishing a book - ‘Countdown to flatline’.
Take your FREE health check today
Did you know that every day over 20 people start treatment for kidney failure?
Several things can increase your risk including diabetes, high blood pressure or being overweight.
Take our quick and easy online test to see if you are at risk.
Why not make a donation now?
Every £ counts towards transforming treatments for people living with kidney disease.