Frances 2525

Hello everyone. Ive recently turned 47 when I was 32 when i became jaundiced, my gp took bloods and the next day phoned to say i was asked to go to the infectious diseases ward to be seen for tests. I was was a tues and I was moving house on the thurs. I felt really upset because I wanted to be home to get organised as you do. At first the doctos didnt know what I had and tested me for AIDS, leukemia and many other diseases. It was a tough time. I had many blood tests, bone marrow taken and liver biopsies performed. Six months later I was diagnosed with pcb and chronic active hepatitis.I unfortunately had the symptoms of both diseases. I never smoked or drank alcohol or took unprescribed drugs. When i was out with family or friends i hated waiting for buses or taxis etc, so i would always take my car. I worked as a nurse and did various shifts so I was constantly busy with a young family. After been diagnosed I continued working but changed to part-time. I was unwell at times with chest infections etc as i now was prescribed routine meds which reduced my immune system. At first my medicines worked well then about 2006 my lungs showed that the same antibodies which attacked my liver where ? attacking my lungs. I had to have lung biopsies which were inconclusive as I had advanced pcb I was to have a liver transplant in the near future. But through time my lungs began to heal which was great. I had to give up work because my symptoms became more acute. My liver really began to fail. I had developed oesphageal varices which i got tied, odema in my hands and feet, severe fatigue, nausea, vomitting, gastritis, diarrohea, pain and discomfort around my upper abdomen as my spleen had now become enlarged, osteoporosis developed painful joints and severe cramps in various parts of my body. I slept for 20hrs a day and even when i was awake i felt shattered. I then went for an assessment for 5 days to the transplant Unit to see if I should be put on the Organ Donor Waiting List. I had many tests to see if my body was ready and strong enough to receive a new liver. My husband and I received the news on the Fri. We were told YES which was amazing. My family and friends were so happy for us too. It was like a calmness had descended over me after being on a very long massive rollercoaster in which I never was able to get off. I only waited 6 months when my husband received the call. I received my new liver the next day. I never looked back. I did have a blockage in my bile duct which the doctors placed stents inside which were replaced every 3-4 months. I recently had the stents removed and not replaced to see if the stents have worked by keeping the duct open. So far I havent had any problems. I wish to say my Gp, my consultants have been brilliant. I couldnt have had any better care. Even now I have great continuous care. My Gp is only a phone call away. I know I am very fortunate but it should be the norm for everyone. I wish to hear from anyone with advice or support or if i can support anyone with pcb. please get in contact.

10 Replies

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  • I meant to say I only found the website several days ago. I think the contact with other people with pcb is great with information and support.

    I also meant to say I did suffer from the dreaded itch on many occassions, I took many long cool showers to try to calm my skin but the doctors were good at prescribing medicines to help. Its so much better when you have a Gp you can speak to and trust, and have a family member, partner or friend who you can talk things over with. It really helps.

    Also I think having a positive mental attitude it too really helps. I understand its hard but I really tried not to worry about anything until it became FACT from the doctors and I still do.

    I just feel it makes you feel upset when later you here its not as bad as you thought.

    I also had severe hair loss but it is returning gradually which is great.

    I can never thank my organ donor and family enough for giving me my life back. I will always be truly grateful to them. Thats why I try live my life and enjoy all the happiness it brings. Best wishes everyone!!!!!

  • what an uplifting blog. I am currently in the advanced stage with cirrhosis, so have found reading this very reassuring. thanks

  • Thank you for your kindness. I think blogging is a really great way of communicating with people with pcb by helping each other with their problems any for giving support. I know that living with pcb can be a very hard lonely existence even when you have great family and friends. So keep blogging everyone!!!!!

  • What a journey! Thank you for sharing this with us. I would agree that it is best to take things as they become FACT. I recently decided to do this and it is helping somewhat. Unfortunately I feel my "experts" have not been as helpful as yours and yes it should be the norm.

    It is very difficult to wait for the facts especially when you have symptoms that immobilise you and make you feel so so tired. It is upsetting for my family as they now notice this, I know they are quite frightened by it all and I try to keep a positive mental attitude for them as well as me.

    Great to hear from you.

  • I am really sorry to hear that you are feeling so unwell. I agree PCB is very dibilitating some/most times depending at what stage you are at. Is there a clinical nurse specialist who works with your consultant whom you call, go and see or she could visit you who could explain things better to you and give you advice one the questions you and your family need answering? But when I am I tired I now just rest, I try not to let let the disease stop me from enjoying life. I know its an old cliche` but I truly beleive that Life is for Living as I feel I have done enough crying. suffered pain,feeling depressed and seeing my family/friends suffer too. But its only because Ive had PCB for 15 years and with a liver tansplant wonderfully donated by someone whom I will always be extremely indebted to 2 1/2 years ago. So I really try to enjoy each day. I never know when I may become really unwell in the near future.

    I totally understand its horrendous when you are so unwell and you really need a professioal to turn to. Your Gp should explain most of your questions and ofcoarse. When you next see your Consultant try and write your questions down what you wish to know. I used to do this. Get them to explain each answer until you understand. Because that is what they are supposed to do and are payed for. Please DONT suffer at home etc When you leave te clinic etc you will then know what you are dealing with, whats to happen now eg, medicines,diet etc and what is going to happen in the furture ie, your prognosis. Bring someone with you for recall as you may not remember everything. I always found it really beneficial.

    When you get home etc you can process it again in your mind and with your family so they too can understand whats happening and dont get so worried and upset.

    Its the not knowing thats the worst feeling.

    I wish you the very best

    frances,,,,

  • Frances, I am sooo very happy with you story, I have been 17 years with just PBC, I can't imagine with the hepatitis and lung problems too. I was diagnosed at 36 with stage 3 and just in the past 16 months went to end stage. I have had some esophageal bleeds and have had 2 transfusions along with the banding, I have a scope every six months and last one was good. I have heard some awful heartbreaking stories and I have heard wonderful ones. I feel very fortunate to be doing as well as I am and I thank God daily. I love hearing your story because I don't really know anyone who has been close to my scenario and I have been twice for the list, just not time yet. Take care of yourself, and enjoy everything. :)

  • sistergoldenhair (I just love that name) thanks you for your kind blog. Ive just went on to the site 6 days ago. I wish I new about it earlier. I just hope you get on the list soon and as you I had great faith which really helped me cope so much better. I know this might seem daft but it gave me inner peace. I thought whatever will be will be. Even on the way to theatre for my transplant I just sayed a prayer. It made me feel calm and relaxed.

    If there is anything you wish to ask please do?

    I do hope you have your transplant soon. You will feel much better and have a great life ahead of you

    Many best wishes!!!!!

  • Frances2525 Thank you for your very kind words. I guess I am not at any "significant stage" at the moment. I was diagnosed in 2010 but have had to fight to get to see a consultant and also been to three rheumatologists appointments because of the debilitation. I asked for a second opinion because I know my own body, the (second opinion) consultant rheumatologist that I saw then was excellent, that was in March last year. She diagnosed that I had vitamin D deficiency anf high cholesterol (I have never had high cholesterol and eat quite well), she also said after considerable examination that I also had fibromyalgia and was borderline sjorgens (excuse the spelling). Due to my symptoms; Severe abdominal pain and distention in my abdomen which goes into my back, unable to get out of bed, feet not bending, dizziness, bone and joint pain, I was asked by my Liver consultant to go back and see the original rheumatologist. He was not any better than when I saw him before and sent me yet again for physio, yet again the physio said there wasn,t anything he could do for me that I was not already doing for myself (I explained this to the rhuematologist when I was there). When I saw the Rheumatologist he said and I quote "it was unfair" that my Liver consultant had sent me back to him and again I quote "I have done what I need to do" and also"there are too many buts I am hearing", my reply to that was "but I don't understand why you are sending me to the physio" he never replied to that. He had a GP with him who was training to be a consultant, he was more interested in talking to him and putting down what the very nice second opinion rheumatologist had said, very unprofessional in my book.

    I am (well always have been) a very positive person and I actually teach meditation and positive thinking, that is why I know when I feel so bad that there is something that needs to be dealt with. My outlook is as you say, if you know about it you can deal with it, it is the not knowing that I find difficult. According to all the information from the information I have found either via this site or from the PBC Foundation who are briliiant, the tiredness does not have anything to do with the stage of the condition.

    I eventually found a locum GP at my practice who took the time to research my condition and he gave me a copy of my blood test results, but he didn't explain them, he thought the consultant would do this, which I agree with, he is no longer there. I know that my bilirubin was slightly raised at 25 when I had my last bloods done and my Alkaline Phosphate was climbing. I foolishly expected my consultant to explain this to me but he didn't and I didn't ask, so I assumed that this was OK, unless he would have told me.

    I am so glad that you have had such good care and that you are now trying to grab life with both hands. I do that too!!

    Love and light to all fellow sufferers

  • Thanx Pipi for replying. I can understand that some doctors are abnoxious as I used to work with them. i know it can be really hard but you have to have a voice, because you are very important person and you must be involved and understand your treatment and care. Just keep on at them. I just ask anything I wish to know even If it sounds stupid because its my body.

    Many best wishes to you !!!!

  • Thanks so much Francess2525. I will keep chipping away

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