On the 4th August 2016 I went to meet a surgeon to discuss the results of an MRI scan following pain from a “suspected” gallstone and to chat about having an operation to remove my gallbladder.
I was told by the surgeon that the good news was there wasn’t a stone stuck in my bile duct but the bad news was they suspected the pain was caused by a very rare liver disease called Primary Sclerosing Cholangitis (PSC). And just like that my life changed forever ...
The surgeon warned me not to google PSC, which of course I did - I read that there was no cure, a transplant would be needed, my life expectancy would be between 10-12 years and I was now at much higher risk of cancer. It was a total shock and a lot to take in. I got home and told my wife that I was sick, one of those moments I will always remember.
A week or so later my worst nightmare was confirmed - I had PSC! And more recently have also been diagnosed with stage 2 esophageal varices, a serious complication of PSC, that means I’m now at higher risk of internal bleeding.
PSC is an autoimmune disease (not alcohol related). My immune system is essentially attacking my bile ducts and slowly damaging my liver. The immune system is incredibly persistent and it won’t stop unless treatment is found or I have a liver transplant, sadly even then there is still a 30% chance the disease will come back and further transplants needed..
Since being diagnosed I have been relatively stable with a two month blip between May’17-July’17 which resulted in a 12cm stent being placed well into my liver for a year.
PSC is an invisible disease which means I often look “fine” meanwhile it’s affecting my life more than most people realise and can understand - Thankfully, I am still able to work full time and am able to get out and about doing things, however I’ve spent a lot of time in hospital!
Since my diagnosis I’ve had 50-60 blood tests, 2 x Gastroscopy procedures, 6 ERCP’s to add and remove liver stents, 3x MRCP’s, 1xCT Scan, 1x X-ray, 5x Ultrasounds, 1x Liver biopsy, 2x Fibroscans, 1x Colonoscopy, Dietician appointments and two different stays in hospital being treated for Sepsis and an infected gallbladder! I have recently started a double blind two year phase 3 drug trial as patient no. 001 in Edinburgh and been “used” in a lecture for final year medical students.
Day to day I suffer from severe fatigue which is hard to explain as it’s nothing like being tired, the dreaded liver itch and poor quality sleep (often from itchy and sensitive skin) with periods of yellowish looking eyes and skin.
Taking all this into account I still feel I’m one of the lucky ones! It can get a whole lot worse and likely will unless a treatment or cure is found.
Please support me by donating to PSC support! This charity not only provides patients, their friends and family with accurate information, but funds much needed research and gives people like me a voice.
Please feel free to share this page on social media to help me achieve my fundraising goal and just as importantly to raise much needed awareness.
What is PSC?
Primary sclerosing cholangitis (PSC) is an immune-mediated disease of the bile ducts with no medical treatment. PSC is referred to as ‘the last black box in hepatology’ because there is so much we don’t yet understand about this complex condition, despite impressive research progress in the last decade. People with PSC urgently need a treatment that works.Donating to PSC Support means you are helping us fund more ground-breaking research projects. The next one could be the breakthrough that people with PSC have been waiting for.#LetsBeatPSC