Hello everyone
I hope everyone is having a great 2018 so far. Sorry it’s been a while since I been on the blog. Life has been a roller coaster for me lately.
I have a question my liver enzymes are very high.
Has anyone taken the Octavia? Is it helping you with the numbers?
Has anyone have a liver transplant from this disease yet? If so did your life change after the transplant?
I have a dr appt next week and they want to discuss liver transplant for me. I’m only 39 yrs old and hoping any advice
Hi Prettyeyes.
Oh my, I'm sorry to hear all you're going through and cannot speak in regards to Ocaliva as my insurance will not give it to me due to the expense. Are you on urso and if so are you responding to it? May I ask how high your ALT, AST & ALK phos is as well as bilirubin? Just curious why they are wanting to discuss transplant already at your young age...
Alt 1457 and bilirubin is 857
I’m taking both urso and ocaliva
I've been told your numbers have a lot to do with transplant, at least in the states. They go with a "MELD" score. Google it. The MELD score is calculated by determining the patients bilirubin, creatinine, and INR. The MELD score ranges from 5-40. The higher the MELD score, the more advanced the liver disease is and the sooner the patient will be allocated a liver for transplant. I sure hope the urso and ocaliva help you out. What a shame that you cannot get disability! It is so disturbing that they dont feel that this is not a serious condition. I hope you win with your attorney. Best of luck!
I also applied for disability twice and got denied. They said my condition is not serious
I feel the Socail Security office should research PbC and. Have it affect our daily life and why we can’t work
Now I have to hire a lawyer and start the whole process again
I have been taking Ocaliva for 4 months or so. It has brought my numbers down to a satisfactory level. I had labs monthly the first 3 months & now will go in April for another hepatic. My dr is very pleased with results. I do not take Urso.
Hi Prettyeyes
I have had a transplant 18 months ago I was diagnosed with Primary biliary cirrhosis back in 2001.
As you probably know your age has nothing to do with transplant, nor really do your numbers as such.
The day of my transplant my billirubin was less than 30. My alkphos about 700 and ALT about 400.
A lot of my docs told me I had cirrhosis which showed on both biopsy and fibroscan. However I had terrible hepatic encephalopathy, To the point that at times I didn't have a clue who I was and I was picked up by the police after leaving my home in the middle of the night. I was hallucinating and it was the worse time of my life. When I was referred to Birmingham, one of the leading professors told me that with PBC its not all about numbers and things can change very quickly, also that with PBC the enzymes don't always tell the whole story about the amount of damage.
I have a photo of my diseased liver and it shows classic signs of being a very sick liver so I was lucky that they didn't pay heed to my numbers alone.
I do know people who have massive numbers and who are not listed because biopsy shows minimal cirrhosis.
I think what I'm saying is, absolutely prepare yourself to ask the questions, read as much 'quality' stuff as you can. Queen Elizabeth's do some fantastic resources that you can read directly. I find that so much more helpful than getting info second and third hand from well meaning individuals and organisations. I don't know what hospital you would fall under for your transplant. But they all have good resources and I urge you to ask them questions.
As for whether life changes after transplant, it absolutely does. Which way it changes is an unknown.. I also have lupus and a few other problems and the antijections have wreaked havoc on my body. My liver now works well. I look after it well, however my bones and joints etc etc are much worse.
Can't help with your questions about octavia as I don't even know what it is, so it was obviously not available or suitable for me pre transplant.
Good luck and remember whilst you 'have' PBC and whilst you are ill, you are 'not' PBC and you must live your life to the fullest everyday. My transplant has taught me that if nothing else.
Thank you so much for the info.
Hi prettyeyes79, I had my liver transplant in June 2017 and returned to work last week. I was diagnosed with pbc in 1998 but had symptoms for a few yrs prior. I was extremely lucky to be under the care of professors neuberger and hirschfield in QEHB who monitored me closely and I knew myself when it was time to push for transplant assessment. My numbers weren't that bad but it was other things, I was on a banding program for oesohageal varies, platelets were only 30 and was just so lethargic. After assessments I only waited 19 days on the list. It's not easy, for you or family but I'm here to hopefully see my grandson grow up whereas when diagnosed I thought I wouldn't see my children grow up. Good luck 😘
Thank you so much for replying back. I’m in the States and have a great Dr who monitor my Pbc. He waiting on the liver biopsy if my cirrhosis spread more or the same before putting me in the list.
When you had your transplant do you still have symptoms of Pbc like the itching and body aches
Transplant Week
Transplant age limit?
transplant fears
Liver Biopsy Results
