hi everyone, i have just joined up in the hope others can share some help..
18 months ago some abnormal blood results for something completely unrelated started me on a journey that has become quite scary !
after some repeated bloods and eventually a visit to the hospital i was informed that i had Primary Billary Cirrhosis. i was hugely relieved to hear from the doctor that it "probably" wasn't too serious as i was young, healthy and is "just something to keep an eye on" and "shouldn't" effect my life especially for the next 20 years, the liver is very robust etc etc etc. i took great comfort knowing that if the doctors were happy then i was happy and i was prescribed Ursodeoxycholic Acid and put on 6 monthly review with no real restrictions, because of the job i do i very rarely drank alcohol so was told that as long as i didn't drink to excess everyday we would just see how things go.
the next doctors review - Urso needs to be increased but nothing to worry about - all good ! i was suffering with fatigue a bit, a little itchy but nothing major
6 months later - Urso not bringing levels down to the docs expectations so will request more bloods and liver biopsy - my symptoms still were about the same although i was getting a little worried now how this would effect my ability to look after my family. and i will now be put on 3 month reviews
3 weeks later - liver biopsy time -...... "that hurt" !!!
appointment through for next consultant meeting.... 4 months time...... i have NO patients between appointments, they seem so far away
ok so 2 weeks or so later i get a letter through the post i wasn't expecting...... liver biopsy results....... oh dear...... as i started to read it i must admit i was expecting the same sort of things i had heard from the doctors on previous visits........ PBC confirmed, no major damage and just keep an eye on things, something like that..... but unfortunately as i read on the letter became very scary..... maybe i was just being naive and or not asking the right questions at the doctors meetings i don't know.... but anyway the results were: - Primary Billary Cirrhosis confirmed WITH Autoimmune Hepatitis and the biopsy shows established Cirrhosis
i have been put on Prednisolone, Urso and Adcal D3. this has now thrown everything into the air, my job, caring for my family and i no longer have any motivation to get up and do anything, normal daily tasks are really getting difficult to do, i constantly ache all over, my sleep is seriously messed up and i am having to grab a few hours here and there when i can. there are a million questions floating around my head along with huge amount of worry and i still have 2 months left until i get to go back to the hospital to see the doc to talk all this over because they want to see what my reaction will be to the drugs they have just put me on
hopefully some of you kind people can share some advice and support which will hopefully mean that it isnt all doom and gloom. thank you all for reading this and i look forward to hearing from you.