Thanks to all for the support towards me-- the newbie pbc-er! If I can laugh about it, I think I'm gonna be ok!
I just don't understand a few things. I am asymptomatic, stage 2, But, I can't understand... my liver numbers were not even super abnormal. Just had ama (don't know what titer) ASt= 42 ALT= 37 ALK PHOS= 198 . How does that figure with how bad the disease is? How does one know how long they've had this? It's been about a year and a half since I had the high numbers, which then went normal, then to high again. Is this a good sign?
Ah well.. just looking for something to hold on to! Thanks again, all! Pat at the Jersey Shore.
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PatinJersey
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Wanted to say welcome and add my support. You've asked many pertinent questions which are probably best answered by a specialist familiar with PBC. Although we share a bond through our diagnosis, our individual PBC journey and the trajectory the disease takes is unique. If you have time to read through the many posts you will discover that no two stories are alike.I was diagnosed 10.5 years ago at 38 when the youngest of my 4 children was only 5. For the first seven years I almost I forgot I had PBC, so little did it affect my life. However, to cut a long story short, I am now part of a minority who no longer responds to Urso and was recently informed I have cirrhosis. I am on the trial drug OCA and under the care of a wonderful specialist who is part of the liver transplant team here in Melbourne, Australia.
I found it a huge mental hurdle to be told I have cirrhosis but in the end I must play the cards I have been dealt with as much grace as possible. In real terms that means appreciating and enjoying the now and the many gifts I have been given. I guess I would suggest not worrying too much about the LFT results - they are really indicative of liver damage but not of how well or otherwise your liver is functioning. Bilirubin, Albumin and clotting profile are what Drs are really concerned with when looking at actual function. As an example I have significant liver damage with deranged LFTS but bilirubin has always been normal, once again proving the liver's ability to function adequately - compensation is the medical description.
I hope this helps a little Pat and I wish you all the very best.
Karaliz, you say what you say very eloquently, and I do hope your drug trial turns your cirrhosis around. How you handle that, I don't know, but you certainly do it well. I guess taking an antidepressent for many, many years lent me the privelage of having the LFT'S constantly checked, and giving me the heads up quickly on the disease at an early stage. Hooray for depression, right?
Anway, thanks for giving me a boost while you go through your transplant journey. Giving to others while one is going through the most, is highly admired by me. Thank you. Lots of love and good journey to you.. Pat in Jersey.
Pleasure Pat - are you up very late ??! The OCA has reduced some of my LFTS but as far as I know and described to me by my consultant, cirrhosis caused by PBC is irreversible. Am still some years ( I hope ) from transplant but just wanted to make the point that having access to an expert, empathetic and sensible Dr has been key to helping me negotiate this often bewildering PBC journey with some serenity ! It sounds as though you are in an early stage as far as progression goes - as you say, a bonus that your LFTs were constantly monitored - which is wonderful.
Know that there is great support here and from the PBC Foundation.
Karaliz.. I am up too late! :-).. But, I ease my mind when I'm up late, and get to pull it all together.
I am happy to hear you are years away from a transplant. I have a doctor who I can even email. He's wonderful.
I still think maybe I have a chance of living day to day and not thinking about this. That is my goal. Worry is worse than the disease, as I have no symptoms.. or maybe I just can put up with more aches and pains than others.
Karaliz..Your good nature gives me a lot of hope and pleasure. I know you will do well. Thanks so much! Here any time to chat. Anytime.
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My partner has PBC, just looking for some help, advice and support
Hello all
So much going on
Hungry all the time
Struggling with work
