Hello!!! My name is Valerie and I have Primary Biliary Cholangitis …
PBC is a slowly progressive autoimmune disease of the biliary system. The bile ducts which link the liver to the gut are destroyed so bile can no longer flow through them, it builds up in the liver damaging the liver cells and causing inflammation and scarring. Over the years the liver can no longer repair itself leading to cirrhosis.
Back in the early 2000’s I felt unwell and just visited my GP who took routine blood tests which came back showing an antibody that can lead to PBC, and of course mine did.
I didn’t really have any symptoms then. I was referred to a consultant and just went for yearly checkups. Was given ursodeoxycholic acid to take.
Then I guess as time went on if I just picked up a normal bug or illness I would maybe have it for longer than anyone else. I never really suffered with itching which I know many people do but suffered with tiredness. This went on for many years, checkups, blood tests and the tiredness just getting worse, but as I worked, had 2 children, a dog, and a home to run, I think I just put some of the indescribable tiredness down to that.
I’ve had X-rays, CT scans, ultrasound scans, ECGs, cameras and a liver biopsy.
At one point I can remember suffering with pain and I went into A&E and had various tests to see if I had a blood clot. I think I was admitted to the wards for further investigations. After puzzling them for a while they eventually diagnosed Vasculitis relating to my PBC. They also found that one of my vertebrae was crumbling too. Was given various other tablets to take and sent home.
I have been in hospital many times and for many things over the years. I got flu which sent my liver results all over the place because I guess it found it very hard to cope with. I was put on a ward on my own for this. I’ve had absolutely loads of outpatient appointments where they always want to take my blood. Sometimes this would be very hard for them to do as my veins are very small and when they put the needle in they slip to the side out of their way. If they did this too much and tried in different places on my arms, it started to make me feel a bit funny And the times I was having to take off work because I just didn’t feel well was getting more and more.
In the summer of 2014 I started to get a build up of fluid in my stomach and legs and feet. My GP put me on water tablets but they didn’t seem to work too well. Just carried on suffering with this for a while. Went to work for as long as I could bear it. Then in November I started to get this extreme pain. It was in my back and side. The ONLY relief I could get from this excruciating pain was to lie flat. (If I managed to go out with anyone in their car I had to put the passenger seat down flat and lie like that while they were driving along)! My stomach had started to swell so I’m guessing the pain was because my organs, especially my liver, were being squashed so tightly. I ended up looking like I was 9 months pregnant.
Then one weekend I could take the pain no more. In the early hours of the morning an ambulance came for me and took me to the JR. I normally go to the Horton so they had no knowledge of my past medical history really. Eventually I was found a bed up on the wards and after many doctors and students examining me, they decided to drain off my fluid. Painful when the long needle and tube was inserted, as I lay on the bed I could see my stomach going down!! and it was very painful when they took the tube out. But what a relief. I think I left the hospital the next day. They put me on a higher dose of water tablets which didn’t seem to work. I was soon back in the hospital again needing another drain. Was so painful this time when it was inside me, I couldn’t bear it and after a while they took it out. This time they gave me another water tablet and this seemed to work for a while and kept the fluid away. I did sometimes suffer with terrible cramps though as all the sodium was going out of my body. Sometimes these were so painful they were very hard to cope with until they passed.
It was the head liver doctor in Oxford (who was such a lovely friendly lady) who said to me ‘I think you need a transplant’. I knew for many years that it would come to this but it’s very upsetting when you are told that it actually needs to happen. She said she would email the doctor in Birmingham and explain everything to him and that I would get an appointment.
So at the beginning of December I went to see one of the liver doctors in Birmingham who confirmed what she had said. I needed to stay on a ward for a week to have various tests on my heart, lungs etc to see if I was fit enough to withstand the operation. I would also meet the surgeon, anaesthetist, dietician etc. and the Transplant Coordinator would meet with me and my family to explain the procedure. They would then have their weekly meeting and decide if I would go on to the transplant list.
So on 4th January 2015 I went into hospital for my assessment and at the end of that week I was told that I needed a new liver and would be going on the transplant list. So after they did all their paper and computer work etc. I was told on 13th January I was live on the list. And so I waited …
Bringing things up to date now I got my call, on 21st February 2015. So I was very lucky as I didn’t have to wait for too long. But that was just the start of my journey …
(You can read about everything that happened around that time if you click on my Archives posts at the bottom on the right)
So far everything is going well now. Long may that continue 🙂