Hello!!! My name is Valerie and I have Primary Biliary Cirrhosis …

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 is 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 have to do this too much and try in different places on my arms, it starts 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!!, 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 has seemed to work so far, touch wood, and keeps the fluid away. I do sometimes suffer with terrible cramps though as all the sodium is going out of my body. Sometimes these are so painful they are very hard to cope with until they pass.

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 now. I’ve known for many years that it would come to this but very upsetting when you are told that’s what needs to happen now. 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)

It is now coming up to my 1st year anniversary of my second transplant and so far everything is going well. Long may that continue 🙂

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6 responses »

  1. Hi Valerie.
    Thank you so much for your wonderful blog, your story is an inspiration for me. I have pbc with 11 yrs now i was Dx when 29 turning 40 next month and am at stage 4. My grandmother also had PBC. It is such a hidden illnesses and it’s great to see awareness been raised about it. It can be so frightening to live with. I have 2 daughters also 16 & 8 full time worker & single mom. Trying my best to get by day to day at times . So happy that you are on the better side of things now…. thanks for sharing your story. I wish you all the best of luck. Hugs from a fellow pbc suffer ! Xxx

    Liked by 1 person

    • Hello Lynda.
      Good to hear from you. I am so pleased that my blog inspires you. That is what I set out to do.
      PBC is definitely a hidden illness. So many people have said to me ‘oh I didn’t even know you were ill’
      Life IS very hard when you have an illness, are looking after children, a house and working. I suffered for a long long time until my doctor told me enough was enough and signed me off of work. Do you get the extreme tiredness that goes with PBC?
      If I can help you further in any way, with information or any worries or questions that you might have, please don’t hesitate to get in touch with me again. It really does help to talk.
      Hope to speak soon.
      Valerie.

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  2. I had a liver transplant 14 months ago. I am at lot older than you and it was for different reasons. I became desperately ill but through it all there were some very funny moments.
    For various reasons I was sensitive about telling people I’d had the transplant . However a few months after I went to a party at a neighbour’s house. I walked into the room and my neighbour announced .. “Everybody this is John ,he has had a liver transplant” I was stunned but then everything changed, I just went all fake modest modest and joked about it ,” Just a bit of day surgery, do you want to see the scar?” Most said yes, so I showed them!. The genuine questions and concern were lovely. So now I am happy to talk about it, if there’s ANYTHING you want to ask me please don’t hesitate. Best wishes, John.
    PS What’s your record for fluid drain, I think I got well over 12 litres one time, Nurses would tease me “not as good as last time, John, must try harder”.

    Liked by 1 person

    • Hello John.
      Thank you for your comment.
      It’s funny isn’t it, sometimes you just want to hide away and other times you want everyone to know what you’ve been through.
      Have you had any setbacks during your 14 months or does it just get easier all the time? I guess everyone’s different, there’s no set rules.
      I only had two drains with probably about a third of the fluid that you had. It was like I was 9 months pregnant with just that amount though and very painful. When I was at my worst I had to lie down all the time to get relief from the pain. Even when I was a passenger in a car I had to lie the seat down. So I dread to think how you felt with that much fluid?
      My friend I made in hospital suffered with loads of fluid, still is actually. I think she may have even beat your record.
      Hope to speak again soon.
      Valerie.

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  3. Great read.. I am currently waiting on a liver transplant in kings… due to Fatty liver tissue / NASH.., I have been on the list since may of this year and due to being underweight through this, after 3 months on a feeding tube im up to the correct weight and became active july 31…, the waiting n that phone call is the worst xx

    Liked by 1 person

    • Hello. Yes the waiting is difficult. I think I was very lucky in that way as I didn’t have to wait too long. But it is definitely all worth it in the end. If you have any questions or worries that you would like to ask me please don’t hesitate. Stay strong and try and keep positive. I sure know that sometimes that is very hard to do. I do hope you soon get a successful telephone call and that everything goes well for you.

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