I was diagnosed with PSC around 2006. So, what is PSC?
PSC stands for Primary Sclerosing Cholangitis which is an uncommon condition affecting the bile ducts of the liver and, over time, the inflammation/scarring of the bile ducts can lead to liver damage and cirrhosis.
Of course, you are free to google more about the illness, but keep in mind that it is not light reading and can be heavy going.
My journey, if I remember rightly, began about 11 yrs ago. One day I was fine and the next I had turned a lovely shade of yellow. Couple that with no energy, and no appetite then I am sure you can imagine how worried I was.
Looking back I question myself. Could I have lived any differently, was it my lifestyle, why me?.
It turns out that it was just one of those things and there was nothing I could have done because PSC as I later found out is an autoimmune disease.
If you are reading this and currently suffer from the illness or any illness in general, I just want to mention that over the years I spent hours searching Google and, according to our good friend Mr Google, all of us suffering from PSC will die very quickly. Actually, I have just pinched myself to confirm it is me writing this and, Dear Mr Google, after 11 yrs I am still here and going strong.
If any fellow PSC sufferer has the time in between taking medication, scratching, resting and visiting the doctor to rewrite the Google script, you have my backing.
During the 11 yrs leading up to the transplant I thought I was OK, but as the years went on I slowly got worse. You know, the type of worse you can’t see as you are living it, but everyone else can see it. Scratching 24/7 becomes second nature that you don’t even know you’re doing it and, the fatigue, one of the hardest parts of the illness is not having the energy to lift your head off of the pillow after a 10-hour sleep.
Not even buckets of Coffee could help me at the time.
Let’s not forget to mention the delightful Cholangitis attacks one gets while having this illness. My experiences and take on it are below. I’m sure a medical textbook would describe it in a more formal way, but you will get the idea.
My first experience of an attack was in Cyprus when I thought I had the flu but later got to realise it was something more serious. Did I mention that I moved to Cyprus about 8-9 yrs ago? The post about that adventure is coming at a later date.
The only way I can describe it is as though your whole body is shutting down. On one occasion I had an ERCP and two days later had an attack and was rushed back into hospital on antibiotics and painkillers which, lasted for a week. The symptoms, as some of you will know are lack of appetite, severe pain, dangerously high temperatures, dark urine and losing weight. However, when you are laying in a hospital bed next to someone with tubes in his throat, you kind of realise that everyone has a story to tell.
Due to the reoccurring attacks, I was put on rotating antibiotics leading up to my transplant, but looking back I can laugh because on one occasion during an attack in the hospital, I thought the curtains around my bed were moving towards me on their own and talking to me. On another occasion, I had a dream that I could not breathe and at the same time, could not wake up. Very scary. Then there was another dream where I saw about 10 doctors and nurses around my bed calling my name and when I woke up there was no one there. The joys of being on so much medication I suppose.
The most insane moment looking back was when I actually thought I was talking to my illness about why me and that I would not let him beat me. Maybe I was in the wrong ward and should have been given a straight jacket and carted off.
To end my first blog post on a lighter note, I want to mention how I managed to get discharged from my last hospital visit in Cyprus after a stay of about 12-15 days. As you do in a hospital, you dream of the moment the doctor comes round with the news that you are going home and the lingering infection has gone, but on this occasion, how did I get to leave?
I was in the hospital during Greek Easter and on Friday I could hear the priest coming down the corridor with his entourage. They came into my room and held what I can only describe as a magic rug over me in the bed. They proceeded to chant and say a few prayers and left.
Whether it was a coincidence or the help of him upstairs, the next day I left the hospital.
Stay strong, stay positive and thanks for reading.
Peace Love & Light