Please note: this post is about our experience with PSC and should not be a substitute for health and medical advice from a qualified health professional
We are often amazed at how many people do not know the important role that their liver plays in keeping them alive and well.
Everyone knows about hearts, lungs, kidneys…but livers seem to be somewhat of a mystery.
Before my husband’s transplant, he was asked quite a few times about why can’t he have dialysis…
Another assumption that is often made is that my husband must have drank too much to damage his liver…a very wrong assumption.
He was diagnosed with Primary sclerosing cholangitis (PSC) when he was about 18.
It took 6 or so weeks, during which most was spent in hospital, for this diagnosis to be made…nowadays it can be picked up much quicker.
PSC is quite rare and usually appears in people in the 40s, and it is twice in common in men.
It is called PSC because…
- Primary – because the cause is not known…ie not because of alcohol or other issues
- Sclerosing – because it causes scarring and thickening (sclerosis) of the bile ducts.
- Cholangitis – which means inflammation of the bile ducts.
Basically, in non medical terms, his immune system decided to hate his liver and declare war on it…scaring the bile ducts, which eventually caused blockages and life threatening infections.
The only “cure” when it gets to that stage, is a liver transplant….there was nothing he could have done to prevent it…a transplant was inevitable.
We don’t know why he got it…no one in his family has showed any sign of it.
I had never heard of PSC until I met him, and the only real sign that he had liver disease was the fact that he always had a tinge of yellow…particularly in the whites of his eyes.
PSC was always in the back ground for us but never really raised it’s head till he collapsed one day at work…ironically the day after my uncle’s funeral.
My husband also had PSC and did spend some time on the waiting list, but for various reasons, never had a transplant.
I remember being so worried when I realised they were checking for similar infections in my husband.
This turned out to be the first of many visits to emergency….which usually occurred in the middle of the night.
His eyes were like egg yolks…
The main symptoms of having PSC for him apart from jaundice was being horribly itchy and feeling very tired.
He took medication to help alleviate the itching, but it didn’t do much to help.
As time went on, he got yellower and more tired…then one day, he got a very bad infection that nearly killed him.
It was then that his specialists activated him onto the waiting list….
During the 14 months before he finally got the call, his condition kept deteriorating, but he only had a few stays in hospital.
He usually ended up on hospital after they tried doing ERCPs to clear some of the bile ducts…he got an infection every time.
He tried to keep up some level of fitness during this time…even going to the gym to do a light workout.
When weights got too heavy, he did water classes.
He knew that if he could keep as much of his strength as he could, it would help to get him through the huge surgery and recovery.
Our days consisted of going out for a few hours in the morning and then he slept for the rest of the day, woke for dinner, and then slept through the night.
And there were endless appointments…we had to go to clinic in the end almost every week as they monitored his condition through blood tests etc.
He got very skinny and couldn’t eat much, but thankfully he never had acites (accumulation of fluid in the abdominal cavity, requiring regular taps) or encephalopathy (confusion etc…mind you, I cannot say that word to save myself!).
A few days before he finally got the call, he was in hospital recovering from yet another infection and blood tests showed his kidneys were starting to fail…
But thankfully, he got the transplant he desperately needed, and hasn’t stopped since.
It took quite a while for me to get used to the fact he wasn’t yellow…I kept asking him if he was feeling alright as he looked pale!
I am not sure whether you could say he is PSC free now he has a new liver, but thankfully his immune system is leaving it alone and everything is working perfectly.
Looking at him, you would have no clue of just how sick he had been…
There is a slim chance it could return…regular blood tests will pick up the first signs of it happening.
PSC is a funny disease…patients can have very different experiences.
It can trundle along for years, and the patient may not ever get so bad that they need a transplant.
In others, it rapidly advances, requiring urgent transplantation to survive.
It took about 20 years from diagnosis for it to cause issues for my husband…and then it went downhill pretty fast.
The good news is that there is constant research into developing medication to help alleviate the symptoms of PSC, if not put it into remission.
Which would be absolutely amazing as it would mean PSC sufferers would not need to go through hell and back waiting for a new liver!
Please note: this post is about our experience with PSC and should not be a substitute for health and medical advice from a qualified health professional
If you have any questions about PSC, please don’t hesitate to contact us or leave a comment below.
And please feel free to share your experience with PSC!