6 months ago I was told I had reached advanced stages with this disease and had cirrhosis. my urso dose was doubled and i was told i would need repeat scans every 6 months to monitor progression and look out for any sign of liver cancer. yikes!! and that transplant would now be likely.
well i'm due for my scan next month, my ALT has improved vastly from a steady reading of 200+ to a meager 95. however i have started to lose weight, (9lb in a fortnight), I feel very nauseas, increasingly fatigued etc. I think things may be deteriorating.
i would really like to hear from any1 who is in a similar stage of the disease or further down the line. i want to know about the assessment process, what happens, what tests are performed. i need to know the how and whens so I can prepare for my next appointment and have an idea of things to ask. I need the replies to be direct and honest, i don't feel fear (yet) just anxious about the unknown and so i need to hear personal experiences and thoughts, so go...sock it to me, what is round the corner?
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itchyandscratchy
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I am in a similar situation for you, have been for one transplant assessment already, about a year ago, but my LFT's had recovered enough in the interim period for me not to be eligible for the transplant list. There are a number of tests I had, but maybe you could e mail me via the site and I could go through them there ( are you happy to do that?) or I am more than happy to speak to you? We can fix a mutually convinient time to talk via the phone?
All I would say is PLEASE dont be scared or worried about the test themselves, they are nothing terrible, and a doddle compared to what you will have already been through, It is more the uncertainty thats uncomfortable. I cannot help you with the uncertaintly, as we all know this blooming PBC is a tricky little blighter, but I think been prepared does help. I hope I could offer you some support as I feel I am speaking from personal experience, I am back at the transplant centre myself for another next week.
Please get in touch, I would like to hope I can help in any way I can.
hi ladies, sorry im not goin to be of any help im at stage 2, but would just like to say how brave and positive yous are, and if i get to that stage id like to take a leaf out of your book, its by no means an easy thing for yous, im tinken of yous, yous should be very proud of yourselves. Ann
Hi itchyandscratchy, I'm in a similar situation to yourself, and treatment is much the same as what I was already receiving just more often, I'm on an eight week review at the moment and have to have regular scans every 3 to 6 months, I also have to have an endoscopy every 6 months, I've been told that my spleen is enlarged and the veins that go in and out my liver have hardened preventing blood flow in and out of the liver, like busylady i was referred for transplant but because the bilirubin levels in my blood go up and down it was decided it was best to wait until they go up and stay up, as for questions to ask, i think every question i've asked gets the same response, we just have to wait and see how things progress, I was told the bilirubin level is the best indication of disease progression, wish i could be of more help, hope you keep strong and positive,
I'm quite positive and do tend to take it easy and go with the flow...just really hate this feeling of no control, i have this need for as much info on whats ahead for me as i can
can i ask, what did your alt and bilirubin go up to when they spoke to you both re transplant?
Hi itchyandscratchy, i completely understand your feeling of no control i feel exactly the same, most of the time i just get on with life and take things as they come but every now and again, i get fed up and think why me, like the time in my consultants office i had a tantrum like a 2 yr old hehe "its not fair, i dont drink, take drugs, i never have done, i lead a healthy lifestyle, eat a good diet why have i got this I WANT MY LIFE BACK", it was quite funny he just looked at me and said "i know" aargh, in response to your question about bilirubin levels, i never get told levels my consultant just shows me on a graph and it goes up and down next appointment i'm going to pay more attention to the figures at the side. take care
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