Thank you all

i just wanted to say that since I found this site I have never felt so part of something. After my sister died, (who also had pbc) I had no one to talk to or put my mind at rest. Although we suffered some different symptoms we both suffered badly from fatigue and used to have a laugh about who went to bed earliest. I now find that on reading this site most of the symptoms I suffer from are not in my head and I take comfort in reading tried and tested solutions to some of them. I know we are not doctors but the support I get from the foundation and on 'talking' on this site is worth its weight in gold. In fact there is not a lot my doctors knew until I passed on to them the leaflets I got from the foundation so hopefully there will be some understanding from them. It appears I am the only patient in the practice to suffer from pbc. So once again I would like to say to you all a very big thank you :-))

7 Replies

  • Hi June 9961 so sorry about your sister you must miss her did you loose her to pbc how old where you and your sis when you where diagnosed i too have a sister but she doesn't acknowledge my pbc my doctor told me to tell her to get tested but she refuses you where lucky you had such a great relationship with each other wish I had that too but I agree everyone on this site is great and there's always someone willing to help you oh and my doctor said that they have another lady at my practice with pbc they say she's had it for about 15 years where you and your sister both diagnosed at a similar time and stage Wendy x

  • Hi wendy, thanks. My sister died of cancer - one of the side effects of the anti rejection drugs. She had a liver transplant 16 years ago. A year after she was diagnosed. She then went on to get pbc after transplant but for most of those 16 years she kept well. I miss her dreadfully. My sister was 39 when she was diagnosed and I was 45. Its just recently that my symptoms have worsened but that could do with age as well. Xx

  • Hi. June9961 and wendom, June I'm sorry to hear about your sister too, I'm 43 and was diagnosed last year, I get lots of emotional support from my mum and sister but my husband doesn't understand, or doesn't want to, he just calls me lazy and thinks I'm acting up, I'm glad this site is here. I don't post on here very often, but I do read the different posts and information. Since diagnosis a lot of my symptoms have an answer. Take care. ??

  • Hiya June

    I'm sorry to hear about your sister. I've found this site and PBC Foundation extremely helpful. I got the 'Living With PBC' manual and copied it to my GP. My sister also has PBC and has been a diabetic since she was 19. We're the only two in our Practice. I also have scleroderma and I think there's maybe one or two others. There are several of us who have Raynauds but as you know not everyone who has Raynauds has Scleroderma but those with scleroderma has Raynauds. The fatigue is hard to deal with for sure. Between having from scleroderma and PBC I also have severe depression and I have it from that. When I was going menopause I was even more tired. I used to joke that my life was one big sleep. :-). I wish you all the very best. X :-)

  • Hi June

    Wow your poor sis went through it didn't she to get the transplant and then get cancer from the rejection drugs I never knew that could happen but at least she got those 16 years with you albeit a small comfort because we all want to be around forever I put things into perspective recently when my son who lives by a baby hospice told me that he popped in there with some charity bags to help them out he said as he walked away the youngsters where waving to him through the window he said he walked out of there with tears in his eyes this made me think of the life those little ones are never going to have makes you appreciate what you've had really doesn't it your sis was a lucky lady to have you as a sis my partner is good but still doesn't lift a finger around the house he's good in the fact that he will pick me up or run me around but that's it really friends tell me i will be fine there's nothing to worry about family don't acknowledge my pbc it's like it doesn't exist I'm 47 by the way Lynne I think I would leave my partner if he said i was lazy people don't understand how bad the fatigue can get hope thing impove for you June stay healthy everyone Wendy x

  • Thanks all for you comments. Its almost like we have our own little family on this website. Stay as healthyas posdible everyone :-)

  • Oops possible! Haha

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