Australia, Diagnosed 1988, Stage 2 now Stage 4, 73 years old
In 1988 I was feeling unwell and fainted, so off to the doctors I went. He examined me and said my liver was enlarged and he said can I ask how much you drink. I told him only socially at birthdays, Christmas, etc, and only then a glass or two. So after a load of tests, CT Scansand X-rays, I was told I had PBC. That I would need a liver transplant within 10 years if I lasted that long and was put on Prednisolone. I was very ill and depressed for the first 12/18 months, and as no support group existed here in Australia, my husband and I decided to returned to England December 1990 to be with family and friends for a while. Whilst there we got involved in raising funds for a new Liver Transplant Unit at the Freeman Hospital Newcastle upon Tyne UK which I attended.
My husband and I returned to Melbourne Australia. In May 1993, I was offered the chance to go into a two year trial for a new drug for PBC called Ursodeoxycholic acid known as Urso. It was a life saver and I was able to stop the Prednisolone.
In 1988 I was a co-founder of a PBC support group here in Australia, but had to leave the group through ill health. I was in 24 hour pain from a cyst in the liver. I had an operation to remove a large cyst from within my liver in July 2000, sadly the PBC support group ceased operation a few months later.
I now have a PBC Support Website and a Facebook page for Australian and New Zealand PBCers to be able to connect. I am very committed in trying to get PBCers here in Australia and NZ together. When you are first diagnosed with this rare liver disease, you think you are the only one and it does help to talk to others that understand what you are going through. In some of the states of Australia there have been PBCers connecting at coffee meetups.
I have many other health issues to cope with and was diagnosed with a (MPN) Myeloproliferative neoplasms called Polycythaemia Vera, and two of the main symptoms are fatigue and itching. I have been to a few conferences run by the Australian Leukaemia Foundation as I think this is more of a worry than my PBC. I am a high risk for stroke or heart attack because of my blood being too thick, so I am on aspirin and a chemotherapy drug called Hydrea to reduce blood cell production in the bone marrow.
I use Systane eye drops for my dry eyes and E 45 itch cream for itch, but do have scars on my feet and ankles and front of my legs as that is the area I suffer most from the itch.
I am a very positive person, and when I have bad days I say to myself there is always someone else worse than you. I have my cat and dog to keep me busy. I moved to the country to be near family after the death of my husband two years ago. He had a massive stroke in 2007, and I looked after him at home. I was his full time caregiver until February 2015 when he was admitted into hospital where he passed 3 weeks later after being diagnosed with cancer.
I am enjoying my family and some “me” time, and planning a trip to the UK with my granddaughter.
Reykjavik, Iceland, Diagnosed 2003, Stage 2-3 overlap
I was diagnosed at the age of 52 by chance after high liver enzymes showed up on successive blood tests. My GP sent me to a liver specialist who coincidentally had done research with Dr Eric Gershwin. He diagnosed me fairly quickly by AMA + blood test results and biopsy.
At the time of diagnosis, I had been experiencing itching on the bottoms of my feet and had noticed that my stamina was decreasing. I was a very active person, cycling and hiking in my spare time and working outdoors all summer. It was only in hindsight that I connected these symptoms to PBC. My doctor believes I had it for at least 5 years before diagnosis. I started on urso right away and the itching stopped. Within 3 months my LFTs were back to normal range and have stayed there for 14 years. I was lucky in a small country like Iceland to have a doctor so knowledgeable about PBC. He told me about the PBCers web page and encouraged me to learn as much about the disease as I could. He always has time to answer my questions and has been extremely supportive throughout the years.
Fatigue has been my main symptom, along with brain fog. In 2008 a cognitive assessment was done and clearly showed that my ability to concentrate was greatly impaired. I had been working as a research geologist, doing field work, analyzing data and writing reports. Because of my symptoms, it became very difficult to work. I tried taking provigil for a few months, but it was of limited help and eventually stopped being effective. In 2006 I started working part time, and at the end of 2008 I stopped work entirely.
In 2009 I developed cyclical fevers of unknown origin. I also had 1000’s of “floaters” in one eye. I was diagnosed with uveitis. A lumbar puncture showed white blood cells in my cerebro-spinal fluid. While my eye responded quickly to treatment with prednisone, the cyclic fevers persisted for almost 3 years. I went through countless tests and various treatments, but nothing definitive was diagnosed. I was ultimately told it was “autoimmune meningitis” most likely related to the PBC. During this time, I had a second liver biopsy. It showed decreased inflammation and no increase in scarring, so basically no progression of PBC. Finally, after a 3 month course of doxycycline, the fevers gradually stopped in early 2012. Since then, I have been feeling better and have been more active than at any time since diagnosis.
Being diagnosed with PBC was frightening at first as I experienced fear, despair and mostly denial. I tried to pretend that I was fine and continued to go about my business as best I could. But the fatigue and brain fog caught up with me and I had to face the undeniable fact that PBC was going to impact my life whether I wanted it or not. I was fortunate to be able to stop working, and although it was a blow, both financially and emotionally, it was the best decision I have made. My life became better when I accepted my new reality. I had a lot of help along the way, including a wonderful therapist, supportive doctors and an understanding partner who stood by me during my worst times, came with me to doctor’s appointments and found ways for us to enjoy life together. I also found amazing support and friendship in PBC related Facebook groups, exchanging information, struggles and laughter with PBCers all over the world.