Texas, Diagnosed 1995, Stage 3-4 overlap
President & CEO
Originally, I was diagnosed with lupus and liver involvement. After two surgeries, Sjogrens diagnosis and another year on the medical merry-go-round, I was correctly diagnosed in 1995 with PBC stage 2-3. I was also told I probably wouldn’t live longer than two years without a transplant. That afternoon my world crashed and I took up residency in the dumpster for a few weeks.
Like others diagnosed with PBC, I had a difficult time coping with my diagnosis and the need of a transplant. I had never heard of PBC and knew nothing of the autoimmune system. I couldn’t believe I had liver disease because I was one of those “uneducated” people who thought liver disease was caused by alcohol or drug abuse. The first few months I spent day and night learning everything I could about PBC and my autoimmune system. Most of the information I found was outdated and depressing, but I continued looking for anything new on the Internet.
In 1995, there weren’t liver disease support groups on the Internet other than the Transplant Newsgroup. I located Joan Dale (PBC), Diana Watson (Post tx PBC) and Grant Bingham (PSC) on the Transplant Newsgroup. We started e-mailing one another sharing our own experiences. I had very little computer knowledge, but somehow with my son Ryan’s help we created a PBC PSC website and it went online March 1996. Our PBC website brought others to our small e-mail group and this is how the LiverSupport-L Group and PBCers Support Group got started. A few PBCers e-mailing one another through cyberspace, has grown into thousands of PBCers from around the world giving each other help and emotional support. Each day I’m still amazed at the number of people afflicted with PBC and other autoimmune liver diseases.
PBC affects everyone differently. For me, the worst has been bone pain, fatigue, dry eyes/mouth and I have a few neurological problems. The fatigue continues to get worse, but my itching improved after I started the Urso 250. Since my diagnosis in 1995, I’ve had a few surgeries, a major stroke (which I fully recovered from), mild heart attack and a couple of other autoimmune diseases have popped up…….but I’m determined not to let PBC or my autoimmune system beat me.
Coping with chronic illnesses & pain are hard for anyone to deal with, no matter how strong minded they are. Sometimes I feel the mental part is harder to deal with than the actual symptoms.
Before PBC I was a workaholic and thought myself immortal. Now I enjoy the little things in life and thank God each day that I’m still around to enjoy them. One of the best things that has happened these past years, is all the wonderful friends I’ve met through the PBCers. Most of us have loving families and friends to help get us through this difficult time in our lives, but I’ve found sharing with a fellow PBC sufferer is, at times more comforting. It’s easier to be open and share with those who actually have the same pain, feelings and fears. I can always depend on the loving, gentle and humorous support from my fellow PBCer friends.
Please remember “there is life after PBC diagnosis”, and our futures aren’t as bleak as was thought in 1995. Most who are diagnosed with PBC now may never experience many symptoms or need a transplant.
Ontario, Canada, Diagnosed 1993 in stage 1/2, transplant #1 on 01/20/2000, & transplant #2 on 12/1/2003
I was diagnosed way back in 1993 after going to my doctor with severe under the skin itching that occurred almost every day after 3 pm and lasted into the early hours.
I went in search of info on the internet in the early 90’s and met two wonderful women, Linie Moore and Diana Watson. We chatted online during the late-night hours. We were joined by Grant Bingeman who had PSC the sister disease to PBC. Unfortunately, Grant lost his battle with PSC last year. Little did we know that our late-night conversations would turn in to the great online group, PBCers.org.
In 1996 I was placed on the liver transplant waiting list at LHSC, London, On, Canada. On January 19th 2000, I received the much-anticipated call that a liver was available for me and on January 20th I received a new liver. I thought that I was good to go but 11 days later problems arose and I was placed back on the waiting list again.
I was very ill and hospitalized on November 27th 2003 about an hour after we received news that my mother in law had just died. My poor Vic was devastated, he lost his mom and thought that he was going to lose me too. Well, my mother-in-law went to find an angel for me – late on November 30th my nurse Monica came to tell me that there was a liver on route for me. I received my 2nd transplant on December 1st 2003.
Life is great now, Vic and I have travelled extensively, we have wonderful grandchildren and a great grandson thanks to the generosity of two wonderful families who honored the wishes of their loved ones
Netherlands, Diagnosed 1990, Stage Post Transplant
Hi, my name is Diana Watson. I’m one of the three original PBCers. I had a liver transplant on March 18, 1990 and I currently live in the Netherlands.
I was born in Los Angeles and met my husband when I was 19. We did some world traveling before settling in Santa Cruz, California. In 1980 when I was in my late 20’s, I developed Reynaud’s which led to the discovery that I had liver function disturbances. My serology data did not support a diagnosis of PBC. It wasn’t until after we moved to the Netherlands in 1985 that my doctor here consulted with some of the world experts and a diagnosis of PBC was made.
This was in November 1989 when I was 38. At that time, my doctor advised me that I should be evaluated for transplantation in January 1990 (just 2 months away) with plans to have a transplant in the first half of 1990. I had my transplant on March 18, 1990. During the years that I had PBC I didn’t have the support of a group like the PBCers. When I had my transplant, I knew nothing about PBC and had never met anyone who’d had a transplant. Fortunately, I was lucky to have loving and supportive family and friends.
I joined an Internet Transplant group in 1995 where I met Linie. She was the first person I’d ever met with PBC. I was happy to have found her and Joan Dale, almost 6 years after my transplant. Linie thought it would be a good idea to start a support group for people with PBC, so she did. It went through a few incarnations before it became the PBCers. She, with the help of her son Ryan, created a web site and our membership rapidly grew into what it is today.
Through the PBCers group, I’ve learned so much about PBC and met so many wonderful people along the way.
Today, I enjoy each day to its fullest, sharing it with my husband David, my daughters Haley and Maya, and beautiful granddaughter Sienna. I’m again active in the sports I loved prior to my Gift of Life. I belong to the Dutch transplant team and have been participating in the World Transplant Games since 1999.
I hope I’ve helped to encourage and support some of you with the story of my transplant, and the good health that has followed me for over 27 years now. After all, that’s what we’re here for.
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