new and frightened!

Hi everyone i am hoping by coming on here that i will have someone who understands..I am 33 years old and have just been given the pbc diagnosis. It has been suspected for a while. I first showed symptoms during my first pregnancy when i was 25. I have had no problems since then and nor with the other two pregnancies/ children i have. My antibodies happened to be checked because of constant fatigue and i have another auto immune didease..crohns. The last week i have been itching and i have had blood taken today. My consultant wants to start me on urso asap which i am happy to do. I am just so frightened that this disease is going to mean i wont see my children grow up. They are only 8 3 and 1. I am young to be diagnosed and soooo worried that i am going to die..please help me!

7 Replies

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  • Hi welcome to our group, can I strongly recommend that you make contact with PBC foundation,they will send you information regarding PBC and put you in touch with your local group. I thought the worst 11 years ago and some on this forum have had PBC for a lot more years the foundation helped me understand the disease .

    My best regards to you Neata

  • one of the finest posts I have seen on here was from a woman who has lived with PBC for a really long time. I will try and find it for you. Her post cheered me up no end because it made me realise that there is no point sitting about worrying about dying. If you're worrying about dying, you aren't living! We could outlive every person around us - can only keep taking the tablets, taking care of our bodies and minds and getting on with life. Thanks to Urso, advances in medicine and early diagnosis, we will be around for a very very long time

  • Hi babe, First of all the itching will make you crazy, so listen to your doctors and take the Urso............it slows down the progress, my doctor gave me hydroxizine for the itch and although it makes you sleepy(it's like a high powered benedryll), it helped me at least deal with the itching. I was diagnosed 18 years ago because of the itching although the docs figured I had it for awhile prior. He said I would need a transplant in 10-20 years. I was 33 and a single mom of six 9-19, working two jobs and had a beautiful granddaughter. When the doctor first told me I thought I would be dead in a week! I cried and cried and when I realized that would get me nowhere, I did what my doctor said and I prayed. I took it a day at a time and there were ups and downs, but then I seemed to be on a somewhat even keel. I had blood test every six months to a year. Of course there are a lot of side effects but you seem to get use to them and they become second nature or part of you and your life is just fine. It's been 18 years for me and they are all grown and on their own, I have 9 grandchildren, the first grandbaby back then has graduated and getting ready for college. She want to be an English teacher and go on missions to help people. I married a wonderful man 8 years ago although it's been almost 20 we've been together and I turned 55 yesterday:)

    I have had lots of ups and downs and I am now in stage 4 liver disease, but I do thank God everyday for all He has given me. I am sure He is with you too and it was so much easier for me to deal with once I let Him take over!! I also agree with SC49, back then I thought I would never qualify for a liver (I thought only the rich got those) and if I did I wouldn't live through it. I have been to meet the transplant team three times and they are awesome!! Just be good to you, love your family and enjoy your life. thoughts and prayers, cyndy

  • Hi there, I was diagnosed 18 years ago and I also thought the same as you. I'm going to die and will not see my children grow up, not true. At first i had a wonderful doctor who sat me down, held my hand and said you will die some day but not from PBC. The itch is horrible but there is so much med. that can help you with that. Remember to take your med's everyday and watch your diet and most of all don't dwell on this disease. Forgot to say I'm going to be 66 in Nove. and still going strong. Hang in there honey.

  • Awesome, I am glad to know that for you and for me:) Have you had any other serious complications and what stage are you in? I know it is all serious, but I try to 'not dwell on it' as you said............I am from US too, and will keep hanging.

  • Hi there and thank you for your response. I am what the doctor said the baby stage of cirrhosis. In Sept. the doctor is going to insert a tube down my throat to make sure I am not bleeding. If I am bleeding it can be controlled with med. if I don't have this test and I am bleeding it can go into cancer. Needless to say I am having the test done. But all and all no other problems . Thank you

  • Aw hun.. I know exactly how you feel. It is just awful when you first get diagnosed. I was diagnosed 2 years ago 3 months after the birth of my 3rd baby. They are 8, 5 and 2. But believe me it does get better.. I hardly think about it any more and that is so bizarre considering how I felt 2 years ago. You will get to see your children grow up and I have been told by my specialist most people die with PBC and not from it. Enjoy your babies and take it one day at a time.. you won't feel like this forever. Huge hug to you and take care of yourself. Mel xx

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