PBC Foundation
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Lonely

I became very sick in 2008 with acute renal failure and raised LFT Very high. I had temp confusion difficulty with so each and walking. Not to mention my vision. I went undiagnosed until 2012 when l went to a city specialist Gastro. I had an intersusseption of my bowel which needed an operation She diagnosed me straight away and admitteded me and started investigations. Fantastic.

Started Ursofalk and have slowly gotten better. Less swollen. Eyes remain extremely dry but not with one pupil bigger than the other. My face no longer is strangely swollen. Biopsy then showed no cirrhosis.

My LFT have come down but never normal.l am getting more pain on my right side and on the left. Getting reflux and a sore stomach. I am more tired. l have a lot of spider nevea over my face and neck. And bluish bruising. on my arms. Looking back l had itching 20years ago on my feet and hands over the years but not now.

I asked my specialist what stage l was and she seemed angry telling me she has very young patients with this disease. I don't want a liver transplant as l am 65. On the next appointment she told me l had cirrhosis stage 1.

I think l might be more. Just want to know so l can make the best of my life.

Sorry about the long story

Any suggestions Colleen

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Hi Colryan

I am 67 this year and was diagnosed in 2006, I have never been staged but since URSO my numbers came down to near normal. The URSO slows down this, for most, slow progressive disease which can for the most part gives us a good outcome. Many of us, including me, suffer with dry eye syndrome or Sjorgens for which regular use of eye drops helps keep eyes more comfortable.

You might try taking your URSO with dinner or all at once just before bed, some report that this helps with the tummy problems. When I was first on URSO I took Omneprazole but now just rennies as I need them.

For me personally I eat a healthy diet rich in vegetables low in red meat salt and sugar. I have chosen to take a multi vitamin which includes A D E & K as we apparently we find it difficult to store these fat soluble vitamins. I try to walk every day (bit difficult at the moment in the UK) and when I cannot I have a static bike. I listen to You Tube meditation and visualization recordings via my mobile to keep my head in a better place which in all helps me to live a more positive life. I have my moments when I get low because of the so called itch of PBC but the grandchildren are often about and it soon perks me up.

You have had a tough time and it takes a while to come to terms with PBC let alone any other disease which brings us low. Try to ignore the impatience of that doctor, you are at appointments for you not to be told how others are - I sometimes think that doctors could do with some time in customer services before their training (warm smile).

Find some time to do something nice for yourself each day, whether it is a ten minute walk around the block or enjoying a cup of coffee/tea in peace, maybe a hair do or get your nails done or perhaps even a consultation with the local beautician in the chemist (Boots?) to get advice on some make up to cover the areas on your face and neck that are bothering you - slowly build on the good things and look forward to the rest of your time on this earth.

let us know how you are getting on

best wishes

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Thankyou so much butte rflyEi . It was lovely to hear from you and give me a smile about my Specialist.

I think in time l will ask to see a hepatologist. For now l am nursing a very broken ankle and so l am getting more rest with no work. I can now drive which is good. Have Cam boot. My eyes do give me a lot of grief so red sore and gritty. My GO has prescribed HYLO FORTE on script. Expensive but double the strength. Much better but at times still doesn't work or takes time.

Again thank you for your response it can be a lonely road as family don't really understand or my kids just don't like to talk about it. My son will but my daughters avoid the subject.I think they want me here for ever!!!!. My mum is 93 so it is hard for them to get it in perspective. Plus l was a single parent for a long time as they were growing up. But l will continue to enjoy my beautiful grandchildren. Cheers

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