Claire's Story - Calciphylaxis
This is a story of a brave young woman who was diagnosed at an early age with kidney failure.
Claire developed a rare complication of Renal Disease - Calciphylaxis.
Claire's last wishes was in order to raise awareness and try and save someone else suffering her complication that she wanted her story told.
A the time Claire was diagnosed only three cases were know, Claire, an elderly woman who did not survive, and another patient who unfortunately is also no longer with us, though she did not die as a result of the complication.
Claire Bassett was diagnosed with chronic kidney failure and was undergoing dialysis since her teens.
Claire died at the age of just 27 having been diagnosed with a rare condition called Calciphylaxis.
It started when Claire noticed a patch on her skin which she thought was died blood, however when she rubbed it was extremely sore.
As time went on Claire was in a lot of pain. Claire also has Gout in her hands causing her fingers to swell, and was feeling quite ill for some time. Claire though it was her medication and the gout that was making her so sore and soldiered on for a few months.
In November 2015 the pain was so bad that Claire was admitted to hospital, where she woke up one morning somewhat confused. She was sent for x-rays and scans and it was discovered that she had retained fluid from her dialysis – she was on peritoneal dialysis at the time, and this fluid had accumulated in her lungs. A drain was put in and Claire was on Oxygen for a couple of weeks, but even after the treatment Claire was still feeling very sore, but was still discharged not long before Christmas.
Once again Claire soldiered on until December 227th when she was rushed into hospital screaming in pain. The medical staff could not understand why she was still in so much pain.
Claire was put back on Haemodialysis – this was planned from her earlier admission.
It wasn’t until 12 days later when a doctor was in while Claire was having her dressings changed that a doctor was pretty sure this was Calciphylaxis. No wonder Claire was in so much pain as the condition causes stabbing sensations.
Normally Calciphylaxis occurs in the lower area of the body, however in Claire’s case the area affected was all the way across her stomach. Claire being obese had access problems and it was an uphill struggle to get stable access for dialysis, finally Claire had a line put in and we all thought we then had time for Claire to heal.
Claire put up a brave fight overcoming many obstacles until in March when the condition had finally caused the flesh to die off and was starting to affect arterial veins. Claire had a massive bleed on March 23rd, and did not want to be awake for another bleed as it was so terrifying that she asked to be sedated.
Sadly Claire passed away a couple of days later on March 25th.
Before Claire died she wanted to make sure people were made more aware of this terrible condition so that others could be diagnosed early enough to stand a better chance of survival, and had she herself survived would have made sure of this.
Calciphylaxis is a condition where cells in the skin and fatty tissue die
It is seen mainly in patients with end stage kidney disease
It is reported to effect about one percent of patients undergoing renal dialysis
The mortality rate is extremely high at up to 80 per cent, often within several months of symptoms starting.
The primary cause of death is from secondary infection of the ulcers, and sepsis
While the cause of Calciphylaxis is not properly understood, it blocks small blood vessels deep in the skin.
They become blocked with blood clots (thrombosis) which leads to the black extremely painful, necrotic and ischaemic areas.