Newbie to the PBC Foundation

I was diagnosed with PBC about 10 years ago and have had very vague symptoms until 3 1/2 years ago when I turned yellow and retained 26kgs of fluid.

I had an MRI which showed a blockage in my Liver and they put me in for day surgery to have a look. The surgeon was shocked to find my liver full of puss, the feeling when I awoke that afternoon was amazing as I felt so much better with that all gone and was started on an antibiotic drip, well this feeling was short lived with my health deteriorating rapidly very soon after. I was gravely ill and transferred to a bigger hospital under the guidance of 2 specialists who couldn't seem to agree on the course of treatment or action plan for me. Unfortunately they should have got me to the Liver Transplant Unit sooner as I may not be writing this and all would have been well and sorted out. But, hey things happen! By the time I reached the transplant team the Professor didn't think I would survive as my bloods already showed I should not be here, but I am! I was waiting for the next available liver to arrive when my system started to recover slowly but definitely showed signs of recovery. I finally left hospital 2 and a half months after my scheduled day surgery. (a very long day indeed) I went home without a transplant.

I went home to face another 6 months of inability to get off the couch or up the stairs to bed, feeling like death every day.

I have continued to struggle even until today as I have constant debilitating pain, abdominal swelling, swollen legs, blown veins from all the initial fluid, liver spots, continual itching, hair loss, brittle nails and white spots on nails, weight gain, insomnia, exhaustion, nausea, diarrhoea, constipation, some light bleeding from the bowel, headaches, malnutrition, vagueness and many more symptoms.

I would not wish my life on anyone as I've not got quality any more, I am just trying to get through every day.

But on the bright side, I am alive.

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8 Replies

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  • Welcome to the site Julez. I too have had a "hairy" experience with PBC when in Jan 2007 it was discovered through blood tests at my apt with my Hepatologist that my liver was in a degree of failure and was told that if they could not stabilize my liver I would be put urgently on the transplant list. Scary to begin with but even scarier considering that I was 6 months pregnant at the time! I was admitted into hospital for a week where I was put on intravenous medicine to help my blood clot and after much discussion with obstetricians it was agreed that I should be put back on the Urso which I was taken off at the start of the pregnancy. The rest of the pregnancy was very difficult as I kept losing weight and was in a lot of pain with my back, hips and legs and ended up spending about the last two months in hospital as needed to be built up and could not manage stairs at home and had to use a wheelchair lot to get about the ward I was on as I didnt want to take pain relief that would put more pressure on my liver not to mention possibly harm my unborn baby. So I just used heat and cold therapies to the areas where the pain was worst. But hey this story has a happy ending as I had a very healthy baby boy via c section at 38 weeks and after having him only had to spend another 5 days in hospital and did get back to "normal" after a few months when I put a bit of weight back on. I am now 43yrs old and my wee boy is 6 and full of life and fun and every day I thank God that he and I are both here. So chin up we all have our trials but as you say we are still alive!! Bfn x

  • Omg I'm actually sitting with tears in my eyes reading your stories.How awful and scary a time you both went through.I know us PBCers are all different and we are supposed to live our life day to day with positive mental attitude but listening to you has put the fear of god back in me again :((((.... I wish you both well and I'm praying for you to find some comfort.

    Best wishes

    Uni 44 x

  • Dear Julez1961, I am so sorry to hear how hard this has been on you. I agree with Universal44, we all have our good and bad days/weeks/times. It is very hard sometimes, especially when you hear a story like yours and I just want to come hug and help and pray with you. I will keep you in my prayers, I hope you still can enjoy some good moments...........and I thank God your alive:) thoughts and prayers, cyndy

  • Dear Julez1961, you poor love you have gone through so much are you still on line for a transplant. I do hope so as this could turn your life around. I hope so very much that things will get better for you. Big hugs xx

  • Hi Julez1961

    I have been on quite a downer this last few days, basically feeling rubbish, so fatigued and in a lot of pain. Then I read your story......wow I've got an absolute cheek to grumble!!.

    You are obviously a very strong person to have coped with all that has been thrown at you so far, its this inner strength and courage that will get you through this.

    Big hugs and best wishes for the future

  • Thank you all for your kind wishes, I have just come out of spending another 4 nights in the hospital as I have had a persistent temperature of over 38 for the passed 3 weeks. As soon as I was admitted as with "Murphy's Law" my temperature subsided and I had started to feel better! I was so sick the week before I couldn't get out of bed soaking my nightie during the night with fevers! but the Liver Transplant Ward had no beds available. anyway I am feeling a lot better and got home to all these amazing inspirational words that blew my mind! Thank you all for caring so much, no ones ails are more important than another's and I feel for you all.

    I want to reply individually, but I'm not that strong today and I want to thank you now.

    ***littlemo I could never imagine the fear for your unborn child and having to deal with all you have, your strength is beyond belief. Keep healthy and let me know how you are going.

    ***Universal44 Sorry to make you cry, that was not my aim. I am happy and trying my best to live my life to the fullest, I live in Australia and am taking (all being well) a trip to Port Douglas with my loving girlfriend we all have a story her gorgeous husband passed away this April. Port Douglas is a beautiful place near the Great Barrier Reef in Queensland and I am looking to either skydive or hot air balloon, not sure yet maybe both but don't tell my husband he will freak out that I will hurt myself. ha ha! MY BUCKET LIST --- TICK

    ***sistergoldenhair - Cyndy I would appreciate a hug sometimes and that is very kind of you. Yes we certainly do have many ups and downs, I go to clinic sometimes and count my blessings I'm not as sick as some of the people in there. Very sad for them. But some days I am!

    ***Shirleygreen Thank you also, yes as I said to Universal44 I have a lovely holiday planned in a couple of weeks and my daughter is bridesmaid in her best friends wedding a couple of days before I go so they are things to look forward to, and yes I am a bit further down the list than I'd like at the moment but in Australia (not sure about other countries) the list is just what they call it. The sickest most life threatening are bumped to the top which if fair enough. I have done my workup for the transplant.

    ***mumofthree hey don't be so hard on yourself, if you feel rubbish you have the right to say you do. I have been such a martyr for the past 3 1/2 years pretending I'm Superwoman and you know what, I'm not.

    I fell in a heap a few months ago and was also diagnosed with Post Traumatic Stress Syndrome as I have had a lot to cope with

    My Nephew 22 was killed in a motorbike accident 7 years ago

    My Brother-in-law 65 died of Lung Cancer 4 years ago

    My Niece 34 died of Cervical Cancer 1 1/2 years ago

    My good friends husband and my friend died of Lung Cancer this April

    Plus I have spent the last 3 1/2 years trying to stay alive and run a very successful Hairdressing Business that I own.

    When I told my family the Psychologist diagnosed Post Traumatic Stress Syndrome my gorgeous family said "Really no shit" who wouldn't have it with all that going on!

    I laughed as I thought I was coping but they knew it all got to much. Funny now..

    Anyway I hope I got you all and thanks for listening to me and replying it made my day.

    Love Julie

  • Hi Julie I have recently joined this site too and I read your original post last week. I have spent the last 2-3 days trying to find it again on the site. Your an amazing, strong lady. I have had a stressful couple of years between bereavement and PBC issues and last week was feeling quite sorry for myself. I have finally had to give up my career as I'm not now not fit enough to do my job and the letter from my employer had just landed. I read your post that same day and realise that there are people out there who are suffering more than I am and are still getting on with it. I'm glad your feeling a bit better and looking forward to your trip. Your family sound like mine.....they tell it like it is lol. I have found this site invaluable as prior to reading the posts on it I felt very isolated because most people don't really understand the condition. Good luck, have a great trip and stay strong x

  • Julez, I am glad to hear you are out of hospital and looking forward to your holiday. I am sending you a cyber hug ((())) xx.

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