My Husband Paul has had Psc for over ten years, when he was diagnosed with this illness we were told it was a slow progressive illness, and true to their word it was. But on the 18th of September of 2009, Paul started to feel unwell and became very thirsty, he decided to go to bed, shortly after this, he started vomiting, which looked like black tar,  it was a very frightening time as we didn't know what was happening and why. Our son came into the bathroom and told me to ring 999, as I told the operator, he informed me it was dried blood and that Paul was having a variceal bleed, the paramedics arrived and the vomiting stopped. They took us to the hospital and Paul was taken to a cubicle. After been there for 10 minutes, he started to vomit red blood, the nurses had a conveyor of sick bowls, it was a very distressing time, I can't even explain the anxiety that Paul was going through, its a day that I won't forget for the wrong reasons. Luckily enough a doctor was able to stop the bleeding. Paul was in hospital for a week and had to have a blood transfusion.

After this bleed we were referred to a specialist Liver unit in Leeds in October 2009, where he under went a liver assessment.what a fantastic place this is, they have treated Paul with clarity and are true professionals. The outcome of this was that Paul didn't need to put on the transplant list at this particular time, but that he would be under Leeds from now on, which was a huge relief. Paul has become very tired, as fatigue is one of   the symptoms associated with PSC ,as is itching, most days its awful to see him itch, theres not much relief.

The past year I have noticed  a huge difference with Paul, he looks very Jaundice, very tired and has no appetite. He's had quiet alot of time off at work. We had an outpatients appointment in April and blood results showed, that his billirubin was high. Paul looked very jaundice today and felt lethargic too.This triggered off the next liver assessment, he had an ERCP, which showed his bile ducts were narrowing, this time they had to put a stent in, as the bile was flowing into his blood, which was causing some of the jaundice. He was in hospital for a few days. On May 16th 2011, we had a meeting to discuss options about liver transplantation, one of the options was live donor, which I wanted to do, Paul's blood group is O Negative which is rare, I had my bloods tested to see if I could donate, unfortunately I'm B Positive. It was quiet an intensive meeting, but we could ask questions and they were honestly answered.

Paul was officially on the transplant waiting list on Friday  20th May 2011, Paul has come to terms with this, as he knows that the time has come, hes constantly fatigued, itching, no appetite and very jaundice. since last Friday which was the 26th May 2011, Paul started to get swollen feet and abdomen, he started to get a temperature as well, I rung Leeds hospital, they said they would get a prescription of antibiotics for him, as he had an ERCP procedure just a few days ago. By Monday 29th may he became unwell, I took him to our local hospital, where they did some blood test, they showed his billirubin was high , Albumin and protein levels were low.He was admitted to the ward and prescribed protien drinks. The following morning  a student doctor came to see him, and said Paul's consultant Dr Klass,may see him today or tomorrow. They put him on Fresubin energy drinks three times a day, Paul says they taste horrid! The next day comes and goes no sign of any doctor, at this point, I thought why the hell are they doing this, hes on the liver transplant list, could get a call at anytime and you want him to sit here, he could be sat at home with his family ,drinking Fresubin!!!!!

I rung Leeds hospital, as you have to inform them of any hospital admissions, they said to carry on with the drinks and if we had any problems, they were only a phone call away, brought Paul home, he rang the Liver unit and spoke to one of his doctors, who was very reassuring and put his mind at risk thank goodness for Dr Raheem. I just want my old hubby back!!!!!

Wednesday 1st June 2011
Paul has been poorly, very jaundice still got swollen feet and stomach, been in bed all day, the same Thurs, Fri, He rang Leeds today, spoke to a nurse, she arranged for Dr Raheem to call us straight away, he was fantastic as usual and his going to speak to Paul's Hepatologist Dr Davies (Another fantastic Dr)  hes going to suggest that fluid in his stomach should be drained. They will call us first thing, fingers crossed!!!!
I feel useless as there's not much I can do apart from making sure hes comfortable. Paul can't sleep at night, our minds go IDLE and you think to your self will we get the call?? Both our phones have become very valuable,I constantly look at my phone, the nights worse as I lay awake ,then if  I fall sleep, I wake up grabbing my phone to see if  I have missed a call.. its ironic;  my family and friends always said I would be the last person they would ring in an emergency, as I'm hard to get hold off, I'M NOT ANYMORE!!!!!!!