Wish it would Go away

I'm 19 and just had a baby 10 months ago and ill

I think about is that I'm going to leave my baby behind.. Because my liver is getting worse my bloods are going up and up. I just been out back on 8 steroids till I go back to hospital I'm January, but doc days if 8 don't work I will have I go in.. What do I do to stop me thinking I have not got long left. I'm only 19 had this Pbc lap over since u was 16 but got told I had it this year.... What do I do? Anyone

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  • Hi, I had jaundice (no previous symphtoms) when I was admitted to hospital last May, my iron hemoglobin was so low I had to have a transfusion. Was in for 3 weeks, every test under the sun and was diagnosed with PBC. Had iron transfusions and vitamin k and steroids intravenously whilst in there. Got out in June on 8 steroids a day initially, 6 urso capsules a day, iron, calcium etc. Had to go back for bloods every two weeks and see consultant every month. As I reduced the steroids my bloods wobbled a bit but eventually they got to a point where they were able to ween me off the steroids and put me on an immune suppressant which seems to be working really well. Consultant thinks I may just stabilise at this level now and they seem to be happy enough for the moment. I don't have to go back for bloods for a month and to see him for two months. Most importantly, I feel great and other than going to bed earlier than before I don't have any major changes. I watch what I eat and don't drink mainly because of all the meds mixed I just can't. Now I am 44, you are a lot younger, you have a great chance of this working out for you. It's amazing how the steroids work once they kick in. I was told sometimes they work immediately with people then slow down, sometimes it takes a while and the they work really quickly after that. If they don't work don't worry there are other medications, there are loads of things they can do and sometimes it's just getting the balance right. Try to relax and be positive (I know, I know,easier said than done) really there is no point in fretting over something you have no control of. Trust life. xx

  • That's really good, so glad they have help you :). I have had this Pbc lap over for 4 years I was going to doctors for about a year, and he just keep Givein me antihistamines for 4 years I had this ich on my legs and it got worse and worse they never did anything. But when I was a baby i had strep B meningitis and once again they says there is nothing wrong with me, but my mum new there was and then she got told I was going to have problems with my kidneys and my liver when I'm older but they doctors now says its nothing to do with that. I have been on steroids for narly 8 mouths now and they doctors put me on 8 then brought them down to 6 then 3 and now when I go to get my bloods done they always go up and down. They were in there thousands at the start got them down to 400 and something. Then got my bloods done in about 2 months ago they were 203 then got my bloods done a week and a Hal ago and they gone up 100 in a week. They think I'm not taking my steroids but even though I don't want to I need to for my baby and family. Ever since I got this Pbc lap over my life has just gone down hill all my family are getting ill lost my auntie last year to chancer my other auntie got it to and now my gran. But now that I'm back on 8 steroids I got to get my bloods done on the 28th and if there back up I got to go in to hospital, to get the steroids drip. They doctors says he don't think the steroids are working anymore. But just hope they go done but when they do and I go lower steroids they go back up.... It's a nightmare.thanks for posting, best wishes

  • Hi Flynnlogan

    Firstly, have you been in touch with the PBC foundation they are based in Scotland, you can contact them by email, phone or you could send a message through this site to 'PBCRobert' who I know is one of the helpers at the PBC foundation. They will be able to give you lots of help, advise and support.

    You've had a tough old time of late havent you...its a time you should be feeling on top of the world with having given birth to your beautiful baby. Try not to dispair...easier said than done I know...but the more anxious you are the worse you will feel. Have you been put on URSO because that is the only drug at present that is prescribed for PBC and is given to slow down the progression of the disease. My readings are almost back to normal since I started taking it and thats nearly 2 years ago now.

    I was diagnosed Jan 2011, 2 months before I was 50. My main symptoms were joint, muscle and bone pain and fatigue, luckily I do not have the itch which so many other sufferers like you seem to experience. My PBC was picked up through blood tests carried out by the rheumatology department while undergoing tests for rheumatoid arthritis. My aches and pains however started some 10 years before....10 weeks after giving birth to my third child. I had excrutiating pains in my hands, arms, shoulders, feet, knees and hips.The pain was so bad I could not pick up the baby... I had to scoop him up into my arms and was not able to carry him around. I could not walk down the stairs I had to come down on my bottom....I could not walk up them without my husband helping me. It was a very difficult time and like with you should have been one of the happiest times of my life.....but I was so miserable with all the pain I was in. My GP thought I had Viral Arthritis and referred me to a rheumatologist. It took 3 years for my appointment to come through....it was a complete waste of time ....the consultant could not find a reason or give an explanation for the pain I was suffering and basically sent me on my way telling me I did not have arthritis and to try and loose some weight. I was none of the wiser and lost all faith in the medical proffession after that ...during that time I learned to adapt the ways I did things and how to cope with the pain. It was not until 10 years later after having a 2nd referral to the rheumatologist that I was eventually diagnosed with osteoporosis and osteo arthritis, and then the gastroenterologist who the rheumatologist had referred me to also diagnosed PBC.

    I know you are a lot younger than I am being diagnosed, but I learned about 6 months ago that the daughter of a work colleague of my sister had been diagnosed with PBC in her early 20's also following childbirth. That girl is now 43 and has since had a further 2 children and is doing really well.

    I was pretty devastated when I first found out I had PBC... like you I worried myself to death thinking I would not be around to see my youngest grow up....I went through a rollercoaster of emotions in the first year, all I wanted to do was to hide myself away, I did not want to think about it, I thought if I didn't think or speak about it it would just go away ...ther was no light at the end of the tunnel so to speak. But after contacting the foundation and finding this site and communicating with other sufferers I now know that even though I have PBC it does not mean that I have been given a death sentence.....by adapting and making some changes in my life style there is no reason why I shouldn't go on to lead as long a life as any one else. I feel far more positive about life....why worry about something that may never happen.... I have PBC and there is nothing that I can do about that ......but I have a life to lead and I am determined that I am not going to make the most of it.

    So be positive, you are young and have a beautiful baby. You are going to be around for a long time yet so enjoy your baby, he or she will have grown up before you know it..... and make the most of your life.

    Big hugs sent your way, Have a lovely Christmas and a Very Happy New Year.

  • I'm 38 and have a 5 month old baby, a 3 year load and a 4 year old. I was devastated at first when I was told and was totally beside myself for a couple of weeks. I've had a scan which was all good news with everything looking normal. I swing from feeling positive and up beat to feeling like my world is ending. So sorry you are going through all this:( stay positive though (I need to take my own advice sometimes) and I hope you start to feel better x

  • I had a biopsy done few months back and it shows my liver is total not Normal... I also suffer from autoamune hepatits and Pbc it's a lap over I hate sayin autoamune hepatits cuz people have got it wrong and ask what type.... It's horrible for me to sit there and not wanna say anything. But people need to know autuamune is liver nothing else can anyone help me get thro this with people thinking something total different

  • Hi Flynnlogan welcome to the site. I too would advise you to contact the PBC foundation they will give you lots of advice and support. I went through a very rough time (read my blogg) about 6 yrs ago when I was pregnant with my second child. My liver was in a bad way and my consultant warned me that if things didn't improve drastically I would need to be put urgently on the transplant list so not only did I fear I would not see my daughter (then aged 10 grow up but also that I may not even get to give life to mu unborn baby. so its fair to say I was frantic with worry. Bottom line my worrying didn't change a thing only made me more stressed out and unable to enjoy the joys of pregnancy. I am happy to tell you though I bounced back from this and my liver did stabilise. Six years on I am very happy and well (thank God) and really enjoying and living a full life with my fiance and two children. So try not to worry you have us all now too and please God you will feel better soon. Also don't get too hung up on the blood results just go on how you feel yourself. Let the doctors worry about the scientific stuff if they need to monitor you more closely they will tell you. Enjoy this time with your baby it goes in so fast. Happy Christmas and may you have better health, happiness and luck in 2013. xoxo

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