Feeling alone and needing help

Hi everyone, I am the partner of someone who is suffering from PBC. He was diagnosed three and half years ago (age 41) and was told that he was at stage 3 of the disease, so unfortunately quite a late diagnosis. He has been taking 1500 mg of Ursofalk and has been relatively okay until now. Infuriatingly the gastroenterologist would not put him on the transplant list then, even though his Bilorubin count was at 300.

In the last three weeks he has suddenly got much worse and is now in hospital with a swollen stomach and looking very yellow. The hospital is not being very forthcoming with information and he is getting upset. They have said they will put him on the list now but I am so scared for him.

I have been reading some of your blogs and you seem to be so optimistic, you have helped me.

17 Replies

  • hi.im sorry to hear things have got this bad.make sure you talk to everyone you can for reassurance.im sure people on here who have gone through similer will tell you more but if youre in uk try british liver and/or livernorth.they give excellent advice.if you google them they also have a helpline number.keep in touch dont be on your own even if its just to get things off your chest.we are here.take good care of yourself and hope your hubby has a speedy recovery.x

  • Hi cazz22 Thank you so much for your support and yes it is good to know you are all there if I need to talk.. I have looked on the british liver trust website but I know that if he doesn't get a liver transplant sooner rather than later he will die. He is in the end stages of the disease. I have thought of finding out if I am compatible for a live donor for him, but haven't got anywhere with it yet, my GP says I would have to speak to the consultant, so I will. Again thank you.

  • Hi, Cazz is right. You can also contact the PBC Foundation as always have someone you can talk to and give you advice. If you dont want to speak, I personally find that using the blog on this site helps get things off your chest and its amazing the support you will get from others who use this site. You are never alone we are here :-)

  • Thank you June9961 I feel better knowing that you are all there to support. I felt so scared when he crashed and went to hospital, I had visions of him dying and he is the love of my life and I would be lost without him. But they are talking to the Queen Elizabeth Hospital in Birmingham about putting him on the list so all we can do now is hope. Again, thank you for your support and kind comments.

  • Hi,I have been recently diagnosed with PBC three mos.ago.My question to you all is,how have you changed your diets? I am a very good eater,but I admit I love junk food too,I have a sweet tooth and I like salt too .I try daily to stay on track but my genetics fight me every step of the way.Also I have been a social drinker of alcohol,I'm a stylest we get togather often for a beverage,I have cut this way down,by having only two drinks a week or even less .the dr says this is ok,when I read on the Internet that you should not drink at all or moderately.What does this mean? should I stop all togather? I'm trying very hard to adjust to as normal a life as possible,I believe in moderation to live a balanced life?Excercise is something I do daily at least 40 to 50 min.a day. I also have ostiopina.I feel very tired most times,not complaining ,just stating facts.I take ursodiol,and a multi vitamin daily.thanks for listening,I know you all understand?

  • Hi Cecile64, I don't know you age or the details of your diagnosis. I am 54 and was dx at stage 3 eighteen years ago. My diet and alcohol intake was pretty similar to yours. In the US you cannot have drank or smoked w/in 6mo of a transplant. I chose to quit everything almost three years ago as I am now in stage 4, I am glad I did. I personally try to do what my doctors say, I have had them a long time and trust them, although I still check things out. I am not on the list, however have been to the U of Wa transplant services three times and was assured if I worsened I would be put on. Here it doesn't matter how long your on the list, it matters who needs it the most in this area I live in which covers the northwest. I have good and bad days, try to eat healthy but I cheat too:) I try to excersise even though it hurts. I feel pretty fortunate and blessed where I am with my PBC, just keep having the tests and monitoring things. After all, it's so much easier for me to leave it to God. thoughts and prayers, cyndy

  • I immediately stopped drinking any alcohol (though I didn't drink much before), switched to smaller meals, added supplements (calcium, vitamins, milk thistle, turmeric, etc.), increased my water intake, lowered salt and fat intake, and went gluten free. I didn't find any of the changes too challenging considering I feel more inclined to 'eat for my life' now rather than just eating for taste and comfort. Thirty plus pounds lighter, my joints don't ache as much, my belly is no longer bloated, I have a bit more energy, my rosacea has cleared, and I feel and look healthier than I have in 25 years! I do have PBC/AIH, but the doctor has postponed starting meds for two more months given my LFTS are dropping with an improved diet and he wants my weight to level off first. Good luck!

  • Hi, I was dx last week at the Mayo clinic and I must say I loved reading your post. I thought to myself how can I make the most of this PBC? The only thing that came to mind is that have been trying to loose weight for 25 years and now that I have to really "eat to live" this may be my chance to finally make it to my goal. I guess at 46 its not too late! Thanks for the inspiration!

  • hi cecile.buy dr cabots liver diet book off amazon for yourself.you can buy a used one cheaply.i dont follow it to the letter.like you i enjoy my food but feel oceans better using some of the items from diet.i dont drink never have tho.

  • Im a bit concerned about this 'The hospital is not being very forthcoming with information'

    I suggest you DEMAND to speak to his consultant and ask him to explain what situation is

    That is your husband's right!

  • vicw, this is how hospitals are though isn't it? I have been speaking to the consultant but it is a bit like drawing blood from a stone. However, they are trying to get him on the transplant list now at least. Thank you for your support.

  • Rollerteam, I agree with Vicw, you have the right to know and your husband has the right for you to know. All I can say is bug the doctors, if one is not on file, have your husband sign another release of information form that allows them to speak to you and refer to it if needed! I will keep you husband and you both in my prayers, I know it is very scary, just have faith. thoughts and prayers, cyndy

  • Hi Sistergoldenhair, thank you for your advice, with all the posts I have received, I don't feel so alone now. I have been speaking to the consultant and he has been a little forthcoming. As I replied to JennerLayne the hospital is talking to The Queen Elizabeth Hospital with a view to finally getting him on the waiting list for a liver.. Thank you for your support.

  • Hi Rollerteam --- Stay on the gastroenterologist, as YOU are your partner's advocate. Continue to ask questions and consider pushing any other doctors who are in the same practice. Perhaps they can help add support for placing him on the list. Thoughts and prayers are with you!

  • Thank you JennerLayne, for your advice. He is still in hospital and I have been speaking to the consultant and they are speaking to the Queen Elizabeth Hospital in Birmingham who have said they will look at the test results and make a decision. I have to be optimistic I suppose, although he was very ill when I visited tonight, he has good and bad days. The only thing they haven't done for him (and I wish they would) is to put a drain in - he is so swollen he cannot eat anything. Again, thank you so much.

  • Just want to let you know that you and your hubbie are in my thoughts. Sx

  • Only allow him to eat non inflammatory or neutral foods, no additives or pesticides, no alcohol, no pain killers, daily sex, marijuana, hot baths with Epsom salts and essential oils. He'll feel better.

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