|
|||
|
|||
From Around The World
Click on blue links to view pictures
PBCers Organization Founder: Linie Moore with son Ryan
Originally I was diagnosed with lupus & liver involvement. After 2 surgeries and another year of the medical merry-go-round, in 1995 I was diagnosed with PBC stage 3. 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.
Like others diagnosed with PBC, I had a difficult time coping with the idea of going through life with a chronic illness and I would need a transplant. After the initial shock wore off, I began educating myself and trying to locate others with PBC. I felt so alone with this disease.
In 1995 there weren't liver disease support groups on-line other than the Transplant Newsgroup. The PBC information I found was outdated and very depressing. After a few months of searching the Internet, I located Grant Bingham (PSC), Joan Dale (PBC) & Diana Watson (PBC) on the Transplant Newsgroup. We started e-mailing one another sharing our own experiences. I had very little computer knowledge, but somehow with Ryan's help 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 100s 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 liver diseases.
PBC affects everyone differently. For me, the worst has been the pain in my bones, especially the ribs and 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) 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 in cyberspace. 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.
There is "life" after PBC diagnosis, and our future isn't as bleak as was thought in 1995. Most who are diagnosed with PBC may never experience many symptoms or need a transplant.
Thanks to my family for all their love and support. See PBCers Organization "How we began."
Hope everyone has a nice day.
Linie Moore
President, PBCers Organization
In Memory of my beloved son Ryan Moore, who helped start the PBCers Organization and promote PBC education. He will always be greatly loved and missed. November 16, 1978 - March 12, 2005
In Sept. of '93 after just turning 51 and an emergency trip to the hospital with an esophageal bleed I was diagnosed with PBC. Like so many of us, I had never heard of the disease and hardly knew where my liver was. :)
A few years and a "Big Education" later ( thanks in most part to the PBCer's ) I have answers to many questions . Before my dx I had no family doctor, had been healthy I thought (tee hee), and was blaming all the feelings of fatigue and just not feeling well on the dreaded menapause.....Today I am in Stage 3/4, but maintaining very well on medications. Although PBC has changed our lives forever and some times the disease is very present to me, each day I look for and find another Joy.
<>< Grace for the day....Anne Beard in VA.
Anne V.
Hi! I am Anne V. from Sumner in Western Washington state. I am the eldest of 5 children and was born May 5, 1952 in Santa Cruz, California. When I was 8 years old, our family relocated to the Walla Walla, Wash. area/ Eastern Oregon areas where I grew up and graduated from high school.
I attended college at Eastern Oregon College for 2 years and received my B.A. in Education from the University of the Americas in Puebla, Mexico in 1974. What an adventure and I certainly learned the Spanish language and customs in my 2 years in Mexico. Unfortunately, I also contracted Hepatitis A and a severe gastrointestinal infection from eating food and drink from Mexico's markets and street vendors. Not kind to a liver, for certain!
After graduation, I taught everything from Spanish for business people, Bilingual Education, junior high, and elementary grades for 6 years in my hometown. Wanderlust and a need for change and adventure , I relocated to the Seattle, Wa. area in 1979.
I met the love of my life and husband, Frank, in 1980. He owns a commercial printing business in Seattle and has for 31 years. We married in l983. I worked at the University of Washington (where my PBC is now treated) for 4 years prior to giving birth to our only son, Matt, who is now 15. Volunteer work at a food bank, daycare, a women's scholarship group and elementary school have been my focus since our son was born. Matt and Frank have also been so good to help support me in my illness and also the PBCers with their generosity and hope.
In approximately l988, I made an appt. with a primary care provider to discuss the unrelenting fatigue and depression I was experiencing. I was told it was related to post partum and that all modern women are tired all the time. I just couldn't shake the problem, though. I also experienced infertility, endometriosis and had a scare with ovarian cancer, which proved to be benign. I also noticed that the contacts I had worn for l8 years no longer were wearable, as my eyes were very dry. I had nausea and headaches and other minor health problems.
On my 40th birthday, el cinco de mayo, in 1992, I was on my way for a haircut and had a horrible gallbladder attack. My two younger sisters, dad, and both grandmothers had also had gallbladder problems and surgeries, so it was no surprise. Plus, I had the proper m.o. for gallbladder, forty & fat. After a few months of abnormal blood test results, an ERCP and laparoscopic gallbladder surgery, my hmo drs. determined I was in Stage I of this mysterious disease called pbc. Immediately, I headed to the local library and read of my demise in all of the medical literature I could find. How frightened I was! Then I went into denial for awhile. Thanks to my parents, my husband, my psychiatrist, and great friends, and a special RN in my doctor's office, I was comforted and coping & snapped out of it!
When my spouse bought me a computer and introduced me to the internet, I was soooo grateful to search PBC and find the digest and the l00 or so members who were going through some of the same feelings and physical problems I was. What a great feeling, to feel supported and connected! This was the beginning of a new journey of hope for me.
In the subsequent years, I have evolved from a frightened and helpless victim to an involved member of the PBCers Organization. The wonderful new friends and co-volunteers I have met, the gatherings and memories we have shared and the hopes and dreams for a cure and the future are right at our fingertips. Count me privileged to be a part of this wonderful network!
As I contemplate turning the big 5-0 next Spring, I reflect on the past decade and consider myself blessed to have come this far in acceptance. How grateful I am for the empowerment I have received from our angel Linie, the PBCers and the ability to manage my disease with a great medical team as well. My disease has been stable for 6 years and I believe that with cutting edge research and funding, we may all see some very positive strides in PBC very soon.
Betty T
Hello folks, my name is Betty and I live in Swedesboro, New Jersey in the good ole' USA. I was searching the web for info on PBC and found this great bunch of friends...yep the PBCers! I was diagnosed in June of 98 or I should say diagnosed correctly.
In 1986 all the Dr.'s said I had Hep C and although I was pretty tired most of the time I had no other symptoms. Well 3 Dr.'s and 4 biop.s later I was told whoops you never had Hep C, but ya do have PBC. I started going a bit down hill in 97 and had a slight heart attack. I figured at that point I should start taking control of my life and with a new Dr and 9 pills a day I think I'm in control !
I have some thyroid problems now and have developed Raynaurds Syndrome. I also got a bit of the itch ( maybe it's the 7 yr kind )
The big thing is my loss of energy as I have always been an on the go person. PBC is not easy to live with, but I have a supportive
family and great friends to help me through the rough times. I am 45 yr. old and in stage 3, I have 2 children Kim 25 and Steve 23. My wish for me and all my PBC friends is one word....C U R E..
Buck B. and wife Bonnie
After growing up on a Montana farm/ranch, college, etc, I met my life's partner, a city girl from Billings. Bonnie and I married and decided to see the world and subsequently lived in Hong Kong, Santiago, Chile, and Madrid, Spain, where our children Jason and Jessica were born and raised. Family
While living in Chile, in 1987, my annual physical revealed elevated alkaline phosphatase and I began my journey with PBC. I was symptom free and the preliminary diagnosis was Primary sclerosing cholangitis - two years later that was changed to PBC based upon a a sudden increase in the alkaline phosphatase, liver biopsy and positive AMA. Urso and cholchicine were prescribed and taken until we moved back to the States and I was seen by Drs. W. Maddrey , B. Combes and Mayo, at Southwestern in Dallas.
It was recommended that I switch to Actigal and to drop the colchicine. I was invited to join the double blind methotrexate study in 1995 and was referred to Dr. Munoz at Einstein in Philadelphia - my hepatologist. That study was terminated in 2002. I continue on Actigal 1500 mgs/day and except for the occasional flare up of osteo arthritis (left knee) bouts of fatigue; generalized itching; and the occasional mild headache, malaise, fuzzy thinking, I stay healthy with daily exercise; weight maintanence through the SBD; and a regimen of supplements. These include a mutli-vitamin (no iron); COQ 10; SAMe; glucosamine; lecithin; selenium; and the occasional Tylenol or Advil.
After retirement, I began to exercise daily. This consists of aeobics; calisthenics; resistance/weights; and yoga. I play golf - weather permitting and sail the Chesapeake at any opportunity. I also volunteer by serving on the Boards of several non-profits and the local American Red Cross organization. My greatest joys are time spent with my grown children, Jason and daughter in law Amy and Jessica and building our log cabin in Montana.
The PBCer's organization started by Linie, Joan and Diana has been a terrific way to stay abreast of the latest information on PBC. I avidly read the Digest and am an occasional contibutor to the Weightloss group. Time constraints have precluded my participation in the Chat Room, but because those folks seem to have so much fun, I may become a participant.
Buck Brown 60 yrs old; Md
Dx'd 1987; stage 2/3
Carol M.
A Sister's Story: If you are reading this then you probably either have PBC or you have a relative who has been diagnosed with PBC. I have written this article specifically for close relatives of PBC sufferers in an attempt to raise awareness of this devastating disease. Some of you, sadly, are not supported by your familes, whilst others have tremendous support. I hope that those of you who would wish their families/friends/employers to understand the devastating effects of this disease better will find this helpful. This article is about my own experience with PBC, it is not intended to upset or offend any other sufferer. I am aware that not everyone is very sick and I do not mean to generalise.
One dark night, last November, I was running around my house like a headless chicken trying to stem the flow from a burst pipe under a concrete floor. An emergency plumber had been called out but the poor over-worked man was up to his ears in water on another job as I panicked and bewailed my fate. Where was the water coming from? What would happen to the carpet? How many more hours before the plumber arrived? As I snapped at my husband and children, deeply immersed in my 'problem', the telephone rang. My husband took the call and I heard him say, "Can you call back, we are waiting for the emergency plumber to call."
As his face fell I knew that something was wrong. The person on the other end of the line was my sister, Tracey. Tracey didn't call often, being so far away in the Middle East it was a costly pastime that was better utilised by the fax machine. I heard my husband say that she had better speak to me. As he handed me the phone I knew that something was seriously wrong.
In a split second, a million scenarios played themselves out in my mind. My immediate thought was for my three little nephews. Hal almost five, Charlie four and Kit not yet two. God forbid, had something terrible happened to one of them? I found myself silently sucked into a vortex of slow-creeping panic. Could the unthinkable have happened? Had my lovely brother in law who worked as a commercial airline pilot had an accident? Did Tracey have cancer? These were the terrible things that went through my mind in the milli-seconds that passed as my husband silently passed me the receiver.
Reality was replaced by the surreal as my sister's voice reached me over the thousands of miles that separated us. "I've got a terrible disease." Those words will haunt me for ever.
Before that night I had never even heard of Primary Biliary Cirrhosis. As my sister struggled to tell me what she knew about this terrible disease, I made my way into my dining room where I would be at least be able to hear her better. The combination of a long distance call, my sister's broken voice and the noise of my children didn't help matters. As I listened to the devastating news I found myself curled up in a foetal position on the floor with the phone pressed painfully to my ear trying to hear her words and absorb them and make sense of them. I was to remain in the that position for a long time after she had hung up. Hot, fat tears streamed down my face.
I felt completely and totally useless.
After I had spoken to her I immediately phoned a friend and asked for the telephone number of a mutual friend who was a doctor. I will never forget her kindness. Never mind that I was calling her on a much needed evening off, she immediately put my mind at rest and filled me in on what she knew about this disease. Before I hung up she advised me "Don't look it up on the internet, it will only make things worse".
Not having ever done what I was told, I did exactly that. Initially she was right. It did make things worse. I quickly found the PBCers Homepage and subscribed to it. When I received my first email from them I sat and wept silent, choking tears. In fact I sat and cried for a good two weeks as I read the information before me about this rare and unknown disease. I couldn't believe that my healthy, vibrant, sister had any connection to these terribly ill people. Surely there had been some mistake? I waited with baited breath for her to email me with the results of her blood tests.
As an instinctive person who relies very much on what she feels I just KNEW that she wasn't suffering from this alien, unknown disease. We had no family history of such a thing, there must be a mistake. I have since learned that my 'hunches' are not what I thought they are. The blood tests and subsequent liver biopsy confirmed that Tracey had PBC Stage 2. So much for female intuition.
How does it feel to know that your 'little' (38 year old) sister has a life-threatening illness? Let me tell you. It feels like somebody has come up to you out of the blue and punched you violently in the stomach. When people talk of 'body blows', I know exactly what they mean. The night I took that call, I felt that I had been knocked sideways and quite honestly,
I don't think I will ever forget it.
Still - I DON'T HAVE IT. Yes, admittedly it did occur to me that I COULD get it - but for the moment I don't have it. As devastating as it is to discover that your sister is ill, it isn't me that is filled with fear for the future. Not for me, the cold fear that strikes deep into the heart in the middle of yet another sleepless night. Not for me the tears secretly wept over your ungrown children. Not for me the continual doctor's appointments, the painful and terrifying tests, the endless drugs. Not for me the dragging of itching feet across cruel concrete and the permanent scarring of once lovely skin. Not for me the menstrual problems, the relentless itching, the demise of skin and hair. Not for me the denial of a glass of wine, the chomping of a juicy burger, the delights of a tandoori chicken. Not for me the endless fruit smoothies, vitamin supplements, non-fat, additive-free meals and carrot juice drinks. Not for me the drastic weight loss and the fear of waking one day to see yellowed eyes.
Not for me the trauma of a liver transplant. Not for me the panic of being a rare blood group. Not for me to see my strong, ex-Navy husband weep.
The truth is this. Sufferers of PBC may look and behave completely normally. My sister has never looked better. She is blonde, thin and disgustingly healthy-looking. When she walks down a street, into a bar or along a shopping mall, men turn and look twice (or three times). She is stunning. If only they knew...
My sister has Primary Billary Cirhossis. Without a liver transplant in the next ten years she is unlikely to survive. For all our childhood bickering, I cannot envisage life without her. Please do not underestimate the devastating effects of this disease.
Carol R.
I am 49 years old, married 25 years with two daughters 17 and 22. I was dx with PBC in April 1999 stage 4. It was the climax of an eight month search for the reason my eyes were slightly yellow. After months of constant blood work by my primary physician, my gasto dr said he knew what was wrong. Then he told me PBC - no cure - can be transplanted- I wanted to go back to not knowing! He has a wonderful bedside manner and I was probably in a state of shock so the office visit continued as we set up a biopsy on that Friday and I left. Walked to my car and put the key in the ignition and cried for 45 minutes while trying to decide where I would go. I didn't want to go home as my younger daughter was there with friends, I didn't want to be alone so I drove to several people's houses - no one was home so I eventually went home and hid in my room until my husband came home from work. I told him the little that I knew about PBC and then carefully told my younger daughter (who at 14 thinks unless its cancer or aids you're okay). My older daughter was away at college and was too emotional to be told on the phone so I decided to wait till a good time to tell her in person (that ended up being two years later!).
When I saw my doctor at my biopsy I told him about sitting in the car crying and he apologized for letting me leave his office - he thought I was fine or he would not have let me leave. After the biopsy confirmed the dx of PBC my doctor said this is not a common illness so try to learn as much as you can about it. I think he's lived to regret those words since I found the PBCers! I spent the first months after dx focusing on having a transplant - after all every thing I read said 10-12 years before transplant and looking back at symptoms that I now knew to be from PBC I was at the 10 year point. I went to a local TRIO meeting because they were having a speaker on the lastest advances in transplantation. At the meeting everyone told who they were and why they were there - I said I need a liver transplant. A woman came up to me and told me she had a transplant because of PBC. Well she looked fine so I figured I could handle this.
I started recieving the digest and was trying to relate to everyone's stories. My doctor initially didn't give me a stage and since I was doing great compared to the postings I assumed I must be in the early stages. Imagine my surprise when finally under pressure he admitted that I was stage 4! I have on and off itching, trouble sleeping and "liver pain". I was working full time as an office manager until April 2001 when I decided to cut back to part time so I could spend time working for PBC research and organ donor awareness. For years my older sister has been telling me that we've reached the stage in our lives where we should be selfish and put ourselves first - that we've earned it. Having PBC has made me look at my life differently - I no longer do things I don't want to .I have become involved in raising $ for PBC research by "selling" jewelry. I started to make a few pins to take to the conference and make a little money and it's taken on a life of its own and to date I raised $3000. I want to earn $5000 per year in donations. I also decided to become involved with the local ALF chapter and work on the walk in 2002. We have established a local Western New York support group for those in the Syracuse/Buffalo/Rochester area and have had 4 get togethers.
The PBCers organization has become a very important to me. It was there when I needed it and now although I continue to need it I want to give back as well as take. Every time a new person joins and tells their story it take me back to those scared days. I want to be able to help others make it thru those days and realize that ther is life after PBC dx and sometimes it is GOOD !
Read Caroline's "A Sister's Story"
I am 46 years old and live in Florida. I was diagnosed with PBC two years ago. The first indication of a problem was in 1993. I donated blood and received a letter stating that my liver enzymes were high, they couldn't accept my blood because of possible hepatitis, and they suggested that I see a doctor. I had been suffering with heart burn and indigestion which was getting progressively worse, so I thought it would be a good idea to check this out. The doctor ordered blood tests and an upper GI, then an ultrasound of the liver. Not finding anything definitely wrong with the liver she wanted me to take a CT Scan. She was leaning towards a diagnosis of fatty liver and was mostly concerned with my obesity. I felt fine (except for digestive disturbances) and, truthfully, was tired of tests, so I declined. I figured that it couldn't be that bad, nothing hurt!!!
About a year after the letter from the blood bank came they sent me another letter saying that I could again donate. I did and the results were the same. Another letter saying the enzymes were too high. I was starting to be concerned. I saw a new doctor who referred me to a gastroenterologist. He is very knowledgeable about the liver. He took more blood tests and sent me for a liver biopsy which confirmed the PBC diagnosis.
I am taking Actigall (300 mg three times a day) and colchicine twice a day, along with multi-vitamins, calcium, vitamin C & D, iron and zantac (the last two for iron deficiency and gastric distress). My enzymes have been normal since starting the medications. For someone who couldn't swallow an aspirin, I've had to learn how!
For the last two years I have accepted the fact that I have a disease, however I have not allowed myself to think of the seriousness of it or about what the future may hold. I only recently started using the computer and have just begun to look up information on this disease. Hearing from many of you has opened my eyes and perhaps scared me. But I think it's better to be more realistic and better informed. I am thankful to have found this group.
I live in Melbourne, Australia with my husband David and the three most beautiful children inthe whole universe (sorry folks, that's just the way it is - no apologies). They are Sam (nearly 13), Melanie (10 years) and Cookie (nearly 6).
I was dx with PBC two years ago now. I don't recognise the names of the drugs used in your e-mail, but I am on something called Destolit, which is Ursodeoxycholicacid. Every 12 months my doctor has to get special government permission to import it into the country because it is a restricted drug. I have to pick it up one month's supply at a time from a public hospital, where I am registered as an out-patient (that means I only come in for my meds). Otherwise it would cost a fortune and this way I get a kind of government subsidy. I don't think I could afford it if I had to pay regular pharmacy prices. I am on 900mg a day (3 tablets morning and 3 more at night). I hate having to stand in line for it every time - the hospital pharmacy hours are 9-5 and guess what time I have to be at work? 9:00am of course. Guess what time I finish? 5:00pm. But that's another story, which I'll tell another time.
My main symptom was this confounded itching that wouldn't go away. After some LFT's and an antimitochondrial anti-body test they confirmed the reason behind the itch. You could have knocked me over with a feather. Since then I have had a biopsy and I am in Stage One, or at least I was two years ago at the biopsy. The doctor hasn't ordered one since then. he says he can tell from my bilirubin how I'm going. I have LFT's like clockwork every 3 months. I'm still itching but nothing like when I was first diagnosed. Chronic fatigue? You bet.... plenty of that!
My doctor doesn't seem to know much about the whole thing, and sometimes annoys me because I say "I'm feeling such-and-such" and he'll say "Really." That's the end of the conversation. Sometimes I feel like he's laughing at me because I worry about it so much. I do like him and respect him, but I feel as though I know more about it than he does.
I have absolutely no contact with anyone else suffering PBC, so it's SENSATIONAL to discover you all out there. I need to know more, more, more. Thanks so much for being there.
Hi, my name is Diana Watson. I'm one of the three original PBCer's. I had a liver transplant on March 19, 1990.
This is my story:
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 Raynaud'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 and my doctor consulted with some of the world experts that a diagnosis of PBC was made.
This was in November, 1989 and 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. The evaluation consisted of a couple of weeks in the hospital undergoing numerous tests. I was advised to get some dental work done.
At that time the medical observations were:
end stage PBC
cushingoid appearance
enlarged liver
enlarged spleen
jaundice
esophageal varices grade II
slight possibility ascites
My complaints:
jaundice
fatigue
memory difficulty
nose bleeds
itching
pain in left hip
I didn't have much pain and my biggest complaint was the itching.
I returned to the hospital on March 13 to meet the transplant staff, tour the facilities and discuss what arrangements I had made for the care of my two daughters, Maya 12 yrs., and Haley 6yrs.. My mom was flying over from Los Angeles to help out with my daughters because the hospital was 2 1/2 hours from our home in Amsterdam.
On March 13 I was put on the transplant list which consisted of 10 people with type O blood and 1 person with type A blood..........me. I called my mom to come quickly and 6 days later on a warm Sunday morning I received a call from the hospital. They had a liver for me. I didn't want to go but my husband, David, convinced me that I couldn't afford to wait any longer while my health deteriorated. My youngest daughter was at the beach with our neighbors so mom waited for her to get home and they took the train together to the hospital. Poor mom. She'd just arrived in a strange country, didn't speak the language and now she had to figure out how to get half way across the country on her own.
Meanwhile I took a taxi to the hospital with David and Maya. I'll never forget the feeling I had as they wheeled me into the operating room or the looks on their faces. We didn't know if we'd ever see each other again. The next thing I know I'm waking up in ICU and there they all are-David, Mom, Maya and Haley. I'd made it through the 9 hour operation with flying colors and all I could think of was water. They refused me anything to drink. I survived my transplant operation and now I was going to die of thirst.
After a day in ICU I was moved to my spiffy room in the brand spanking new transplant ward. After a few days I had a rejection episode but they reversed it with a radical treatment most of us seem to end up getting. I did well for a couple of weeks. My dad flew over from California to visit me. What a surprise that was!
A month later I developed a high fever and went into shock. I was moved to a special care unit where I battled CMV, meningitis and some other unknown virus or bacteria. During that time David was taking care of the kids during the week and bringing them to see me on the weekends. He hadn't had much experience cooking before then and I still hear stories about his culinary inventions which are referred to as "dad's surprise". Mom was by my side constantly.
I was in a coma for 3 weeks and when I woke up I was on a respirator. I couldn't talk but mom translated for me. She could read my thoughts through my eyes. Somehow my left leg had become paralyzed while I was in a coma--a little added challenge.
From this point on my health improved. So, back to the transplant ward and my beautiful private room. By then my mom had been by my side for 3 months. She was exhausted and coming down with a cold. At that point she was worse off than me. I had drained her of all of her strength. We decided that it was time for her to go home. I was going to be alright.
That's when my mother-in-law came over from Washington. She stayed a month while I regained my strength. Evelyn sat with me doing crossword puzzles to get my brain working again. She would also give me wonderful foot massages on my still paralyzed foot. David would stay with me sometimes. The nurses didn't like him because he would lay in bed and read all day. What they didn't know was that he was my pillar of strength. He would hold my hand and I would get so much healing energy from him. If they knew what an effect he had on my recovery I think they would have been grateful to have him there.
After 4 months in the hospital I was transferred to a rehabilitation center in Amsterdam so I could get therapy on my leg. At that time my sister-in-law, Sandra, came from California to relieve Evelyn. The rehabilitation center was next to a park so Sandra and the girls would take me to the park in a wheelchair. I loved that. Soon I was allowed home on weekends and then after a month I was allowed to go home permanently. A physical therapist came to my house twice a week.
After a while I was able to walk with a brace on my leg. I went to a neurologist who told me I'd never be able to walk normally. I was in tears when I told my physical therapist what he had said but my physical therapist told me not to give up. Sure enough, after about a year I got rid of my brace and today I'm walking around with no trouble at al
I don't intend to scare anyone with the description of my difficult recovery. Transplants these days are a lot less complicated than when I had mine almost a decade ago. The reason I decided to include it is to show that no matter how bad things look nor how overwhelming the obstacle, don't ever give up. Don't believe people when they tell you that you can't do something because they don't know you and what you're capable of. We all have so much strength within us that we don't always realize is there until we need it.
I also want to point out how important it is to have support. I'm lucky to have a loving and supportive family because at the time there wasn't 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. The first people I met with PBC were Linie and Joan and that was almost 6 years after my transplant! Since then I've learned so much about PBC and met so many wonderful people through our group.
I hope I've helped to encourage and support some of you in these past few years. After all, that's what we're here for.
Diana
Diane B at mile 79. WTG Girl!
Hi, I am 42 years old and was first diagnosed with PBC 6 years ago, although my journey first started 8 years ago. I had pneumonia and the infection spread to my liver causing a bout of "non A/non B" hepatitis (don't you just love the name - so original). While my LFT's showed normal liver function, I still didn't feel 100%. Mostly I itched - my allergist went crazy trying to give me some relief. Then my hands and feet would go numb and ice cold. Then in Sept. of 93, my husband decided to raise our life insurance policies. The blood test showed my liver enzymes to be way off balance. I was lucky, I have a doctor who stubbornly refused to believe that my liver just functioned that way and pushed until he got a definite diagnosis.
Since I was in stage 1-2, I was an excellent candidate for the Mayo Clinic's ongoing Ursofalk study. I started taking Urso in April of 94. After my diagnosis, I was very bitter and scared with no where to turn. Finally my nieces sat me down and told me enough was enough (I was beginning to make Hitler look like a nice guy). I realized that I needed my family and that I needed to fight back. My doctor here was very supportive and tried to downplay the serious of the illness, while the Mayo Clinic told me the hard facts and that there was nothing I could do but that the Urso might work . I then decided to take control of my illness. I started dieting, exercising (having a 75 lb. Siberian Husky that needs to run everyday was a nice start) and studying alternative medicine. In fact, I am studying for my doctorate in Natural Health. I put together a healing program of supplements, herbs, and meditation, including visualized my liver happy and healthy. As a result, my last 4 blood tests have showed normal liver function. On my last visit to the Mayo, I was told that I have every reason to expect to live a normal life span (as normal as I get, my Mayo doctor describes me as quite a character) and should be able to completly avoid transplantation. I still have the dry mouth and eye syndrome as well as Hasimoto's Thyroiditis, but I have been able to control the Rayaund's phenonemon and the fatigue (having my nieces stop planning huge weddings helped). I am a member of an Organ Transplant Support Group here in Il. and they have helped me tremendously. But I still get scared. I have a 19 year old daughter, four nieces that I helped raise and a mother and a sister with serious health problems, I'm not supposed to be the sick one. It's weird to have a disease that most doctors know nothing about.
I travel a lot and I now have a special carry-on bag that houses my meds, vitimans and medical records. I learned to find herbal alternatives to prescription OTC drugs because many of them are hepatic and try to always give my liver a user-friendly environment. Like everyone else, I have good days and I have bad days. It's hard to find a safe enviroment to be scared in because everyone looks to me to be the strong one. I have to lead the fight against this illness, and like all good generals, the troops can never see the doubts. But they come. I'm so grateful I found you guys. My OTS group is great, but sometimes I feel like such an outsider because I not on a list. I have found that knowledge and humor help make this dragon much less formidable.
I work part-time at the local high school teaching Technical Theatre. I'm also the resident Technical Director for all of their productions. I build all the sets, design the sound and lighting, take care of the house and box office. The kids I work with are awesome and they have all become my "kids". God has truly blessed me in so many ways.
After 3 years, I finally started dating again. And once again, God intervened and sent me a wonderful, kind, senstive man, who decided on our first date (as I pulled out my tupperware mini full of pills) that he was going to walk this PBC path by my side. I don't know where God will lead us, but I know that I have been truly blessed again.
Hello Everyone,
My name is Doreen and I live in Australia with my husband Bill of 40 years(41 May 02), he is my tower of strength we have a daughter, son and 7grandchildren and one grandson. I was diagnosed with a liver disease in1988. I first went to my GP after fainting a couple of times and havingpain in the liver region, I had not been feeling well for a long, long time.When the doctor examined me he found the liver to be enlarged and sent mefor blood tests, when I went for the results of the blood test he then askedme could he ask a personal question which was, "do you drink" I said yesbut just socially such weddings, parties etc. Then, as you all would haveexperienced, came the full gamut of blood tests, bowel, kidney, gall bladdertests, and numinous other x-rays.
My LFT's were very high (Alk Phos 603) - (GGT 2047) -- (Alt 259),Bilirubin was good, only 13. (normal is below 17) During all the tests Istarted to experience pain after meals and the burning sensation up into theshoulder and was referred to a surgeon who then booked me in to remove thegall bladder, which is when I had my first liver biopsy, I was told I hadGranulomatous Hepatitis and that I would need a liver transplant within 10years. I was then put on Prednisolone 40mg per day.
When I was first diagnosed with liver disease I was very ill and depressedfor the first year or two and as no support group existed here in Australiaat that time my husband and I decided to returned to England to be withfamily and friends for a while, that was Dec 1990. I had another liverbiopsy in March 91 that confirmed PBC.
Whilst there, my husband Bill and I got involved in raising funds for thenew liver Transplant Unit at the Freeman Hospital Newcastle upon Tyne, whichI attended. During that time I met other people with PBC, especially onewoman who had a liver transplant in 1992. In returning to the UK and meetingothers with PBC, I obtained a more positive attitude and was able to lookforward to the future, we enjoyed our time with the family and friends anddecided it was time to return to Australia, we then returned to Australia inMay 1993.
In October 93 my doctor informed me about a 2-year trial of the drug Ursoand as my LFT's were still elevated as the Prednisolone was not helping anymore, he decided to put me in the trial and I had to sign permission formsetc. My LFT's did come down but are still high but not extreme like theywere.
Having contact with others in the UK with PBC, I was determined to try andfind others with PBC here in Australia, I had a story published in our localsuburban newspaper and I was also interviewed on a local radio station inMay 1994 about wishing to make contact with others that had PBC with theview to forming a support group. I got no response yet another PBCer(Rosemary) lived only around the corner from where I lived, she did not seethe article, it was over two years later that we made contact with eachother in September 1996.
In May 1998 we began talking about trying to locate other people with PBCAustralia wide. Through a list of Gastroenterologists supplied by Jocelyn,(we met Jocelyn and another PBCer named Debbie through the PBC FoundationUK's contact list). Rosemary and I started writing to doctors,Gastroenterologists, local newspapers, magazines, stating the wish to makecontact with others with the view of forming the group; We had our storypublished in the October 1998 issue of the Australian's Woman's Weekly, and also in the helpline of Woman's Day.
In July 98 we formed the Australian support group for people with PBC, whenwe decided to form the group, I wrote to the Doctor in England who was myliver specialist for the 2 years from 1991-1993, for any information about PBC. He informed us of the support group in England, The PBC Foundation and also of a doctor here in Australia (who has since given a talk at one of the PBC meetings). The groups first meeting was held in my house in August 1998 and had about 28 people attend. Literature, which was sent to us from The PBC Foundation UK, was photocopied (with permission from The PBC Foundation) and given out at the meeting.
Through health and personal reasons I am no longer involved with the Australian support group but have contact with PBCer all over the world through my Website, the USA PBCers and the Canadian PBCers. Which has been a great for information, support and friendship. I suffer from other autoimmune diseases and fatigue related to PBC, last year I had a very large cyst removed from my liver and ended up have six units of blood, two during my operation and the other four when complications set in when I was back on the ward when my blood pressure dropped to 65/45. I am no longer in 24 hours of pain from the cyst and even though with the complications I am glad I went through the operation. I am now in stage 3-4 and feeling positive I hope to have a few good years left before I will need a transplant.
It is good to know anyone diagnosed with PBC today in Australia is no longer alone and that medical literature and support is available. My health has improved since my operation and I am now involved in volunteer work at our local community centre where I teach computer classes and help on the reception desk. I also spend time working on my Web Pages, which are dedicated to PBC. Doreen’s Web Page PBC the address http://member.net2000.com.au/~dordon
I also distribute organ donor forms and booklets to doctor’s surgeries, health centres and libraries. I ring each year to get a box of 600 or more of mixed organ donor forms and booklets. If only more people could do this it would help to promote organ donor awareness to more people.
For my volunteer work at the community centre I was very honoured to have been nominated for City of Casey Citizen of the Year 2002 and was presented on the 26th January with a framed certificate and a paperweight desk clock for being one of the nominees. I am enjoying life and focused on other things aside from PBC and have learned how to LIVE with PBC.
A BIG Thank You ….To Linie and all her helpers for this wonderful group of friends, words cannot express the admiration I have for Linie and all who make the group what it is today. A place where we can find comfort, have many shoulders to cry on, share our good news and a place to go to for medical information.
Thank All
Best wishes to all
Take care and stay well (as well we can with PBC).
Doreen Donaldson.
Hi! I am 38 years old back in December of 93 my GYN found that I had liver problems, I had gone to a specitlist,witch did a biopsy in March of 94 as soon as he go the results he started me on Actual. As of today I am on Actigall 300 mg 4 times a day, corgard 40 mg once a day and citracal +D 1500 mg 2 times a day. I have gone through several endoscopy since I had bleeding varies, I am still going for the endoscopy every 6 months I do not know what stage I am but I am a status 3 on the transplant list I have 2 liver Doctors, I am seen every 3 months for an examination and bloodwork my Doctor also has me go for a mammogram once a year. I have been married 2 times and am single now, I have 4 children ages girls-19 and 9 and boys-16 and 17 I also have a grandchild on the way, Ever since I found out I had PBC I gave up a lot of things I do not use any hair dyes or perms and I stay away from Paints and watch what I eat. Threes more but to much to say.
My name is Flo, I am 48, married three times 31 years in all. 7 children and 13 grandchildren. I live in Manchester , NH. I was DX in 1987 & 1988, by blood work in Aug. 1987 and the biopsy was done in Sept. 1988 confirming I had PBC stages 1-2 .
Family---Husband Arthur, self in ployed specialist in carpet cleaning & building maintainance and venturing in marketing.
Daughter, Wendy 31 married 3 children hus Chris
Daughter, Gail 30 married (separated) 2 kids.
Son, Joey 26 3 kids never married
Daughter, Julieann 24 married 3 children hus Paul.
Son, Jamie 23 no kids
Daughter, Brandy married 2 kids hus Eirc
Son , david 18 hard worker
Daughter, (Deceased, died of CF age 22.
My hobbie R: Crafts all kinds, Photo Quilting, restoring old Photos, and now Webtv.
I am involved in doing ministry work! with others. I like organizing things. I'd B a full time baby sitter if my kids had it their way.
My symptoms R: fatigue,Itching,dry eyes, noise and mouth,blurred vision, bone and muscle pain . Oh yes fuzzy brain alot. Meds R Actigall, Cholchcine, and Milk Thistel . Also alternative meds.
Come Aug. it will make 12 yrs. I've known about my PBC. But it's only been in the past month that I understand why I felt so alone. With the help of this group I now know how to ask question. I am not alone anymore thank U PBCers. FloE D.
Hello everyone. My name is Gayle Conner. I am 45 years old. I have been married to Jerry for 27 years. We have one daughter, Kathy - 22, who is getting married September 99.
Okay let's go to the beginning of all of this. In 1988 I was having pain in my right upper quadrant that had me being passed back and forth from my primary to my gastro for a year. After many Abdominal Sonograms, Upper GI's, blood test, x-rays, etc., in 1989 my gastro finally decided to do a liver biopsy. All along the only thing that was out of the normal were my LFT's They were elevated slightly. Well the biopsy came back as Cirrhosis. Well I can tell you I was shocked, as was Jerry. My gastro cried when she told me, which really scared me. I was told I had 1 - 20 years to live, and that there was nothing to cure the disease.
I went through 6 months of denial, and then 6 months of intense anger. Kathy was only 12. I was so angry that I might not live long enough to see her go on her first date, prom, driving, graduation from H.S. and college, and marriage. After those 6 months I learned to except what might lay ahead of me. So with God and Jerry, I have come this far.
I grew up in Baltimore Maryland. That is where I met Jerry. Later we moved to Western Maryland, Frederick County Maryland. In 1993 we moved to Georgia. So from 1989 to 1993 I only knew that I had cirrhosis.
Later, doctors could not decided if I had PBC or not. My lab test did not indicate, but all of symptoms did. So from 1997 until 1999 I thought that I had PBC. Well after a visit to my liver spec. he determined that I did not have PBC, but NASH (Nonalcoholic Steatohepatitis) a.k.a. fatty liver. Only 10% of the people who develop NASH actually develop cirrhosis. I guess I am one of the lucky ones.
I found this support group about 1 1/2 years ago. Until then I felt all alone in the world with this problem. Of course I found the group via the net. Ever since I have acquired a new family. I am so thankful for the original 3, or our angels, for starting this support group. I enjoy the chat in TalkCity, the forum, and of course the digest. It was a relief to finally realize that I was not crazy. Even though I now know that I have NASH instead of PBC, I know that I am still part of this family. Each disease, in my case, would have ended in cirrhosis. The only difference between the two is that I now have a greater chance of getting liver cancer.
God has been good to me and allowed me to see Kathy through all the things I thought I was going to miss, except the marriage. On September 18, if I am still alive, I will have accomplished that also. My next goal after that is to live long enough to see my grandbabies. I hope that you find as much support and love from this group that I have.
Thank you everyone. I love you all.
Glenda
I live in Oklahoma and grew up in Tulsa. I am married and have 3 daughters, one still at home, others married, 1 grandson and 1 on the way. I am an Administrative Asst. at an oil well pumping service business and will lose my job in July/August next year due to company moving to Texas. (Worried about medical insurance if I change jobs or end up losing job.) I was diagnosed with PBC in May 96 & was not told Stage (doc just said early stages). Actually biopsy was sent to Mayo Clinic to confirm diagnosis. I am taking 900 mg of Actigall a day. Have tests done every 3 to 4 months to check levels and they are coming down. Am on HMO and have had to change doctors since this was actually diagnosed and this new doc (primary) does not seem to be as concerned as the last one I had (bothers me a lot). I have no symptoms that I can tell, except that I am tired (sometimes it feels like someone just let all the wind out of my sails). Gastro doctor has done research on questions I have asked, but still not answered some and have learned lots just from reading. Need to know from someone what level of calcium I should be taking (by the way I am 47). I have been told to take the amount as if I was post-menopausal. Take a multi-vitamin and minerals (standard amounts).
Hi! I'm writing this for my mother, Helen, who was diagnosed with PBC in 1991. She was having unexplained symptoms of itching, hair loss, and fatigue which we thought might be related to her hypothyroidism. She had also dislocated a shoulder during a fall, only to find out her rotor cuff was so deteriorated that the dislocation could not be repaired. She had developed arthritis, but was still able to get around and enjoy life. In routine blood work for the few previous years, her liver enzymes were elevated, but her physician could find no explanation. She also had abdominal pains around her liver area for years before her diagnosis but her doctor just shrugged and was not overly concerned. In hindsight, she now recognizes many symptoms she experienced long before diagnosis - but then, who knew?
Then, one weekend in 1991 she complained that her abdomen hurt - felt distended and taut. As the day wore one it became obvious she needed to go to the emergency room. They ran all kinds of tests, and determined she had acites (a buildup of fluid in her abdominal cavity) and she was in critical condition. She survived but was told it would take at least a year for her body to recuperate. But they did not determine the cause.
Because of her arthritis, her primary doctor was a rheumatologist/internist who was determined to get to the bottom of the cause and eventually, they diagnosed PBC - stage four. They called it "end stage". She was told she was not a transplant candidate and that she had 3-5 years left to live (depending on which doctor you asked!).
It was, in our minds, a death sentence. And our family reacted the way any would at this news. After getting over the initial shock, we determined it best to combine our households. This way, help would be there when needed, and no one would be alone later on. I want to state emphatically here that it has been an honor and privilege to share these years with my parents.
Initially, Mom was still able to drive, do laundry, and help with the cooking, etc. But as time went on, she began having other symptoms, such as horrible cramping, especially in her legs. When we asked her liver doctor about this, he said it was not caused by the PBC, and she should see her primary doctor about it. When her other shoulder became permanently dislocated due to rapid deterioration of her bones and joints, again she was told there was no correlation. Eventually, the pains in her abdomen, around her liver area, became much more pronounced, and she began having more generalized pain. Her liver doctor said it couldn't be caused by the PBC because livers don't have nerves - you don't feel pain from livers. We just didn't know what to think or where to go for help.
We celebrated her 3 year anniversary (since Dx) as though she had defeated all odds - but then worried about what lie ahead. When she passed her 5 year anniversary, her doctors were astounded. And we treated each holiday, each family birthday, Christmas, Easter, Thanksgiving, etc., as though it could be her last.
But life was marching on, grandchildren grew up, got married, babies were born, all things she never expected to be around to enjoy. But she has, and it has been such a blessing!
In late 1998, her husband of 57 years died unexpectedly and we all worried even more about her health with the death of a beloved spouse. When we asked her doctor about her worsening symptoms he would just shrug and say she was lucky to still be alive. (But, he always said, "Well, your liver is doing fine!) There had to be SOMEONE out there who could give us more information.
About this time, our family got a computer, and in researching PBC, we found this wonderful site, and our whole world changed! I wish I could explain to you what this site has come to mean to us. Eight years ago at dx, they told us she had very little time left. So naturally, with the onset of new symtpoms, or a cycle of "bad" days with severe symptoms and worsening pain, she'd think she was nearing the end. Eight years later........because we finally got a computer we were able to research, and found you all! We laughed and cried at the same time. Laughed because it was such a relief to find out her symptoms were "normal", even for earlier stages, and cried - out of joy at finding out all this information suddenly, and for the wonderful support we suddenly found! But, also, for the lost time - the 8 years of waiting to die, instead of 8 years of coping with a chronic illness that may be terminal. There's a big difference. We never heard PBC described as "chronic illness" until we found this site. And that is truly what it is. It would have been nice to know that 8 years ago. It wouldn't have changed her condition - but it would have made life a little easier, and certainly less stressful for all - especially Mom!
For this reason, it is our opinion that doctors should inform the patient of the many possible symptoms one might develop with this illness. We need to know what might be life-threatening, and what may just be common to the illness. This was made evident recently when she developed severe dizziness - very out of the ordinary and debilitating dizziness. It comes on her very suddenly, and makes her VERY ill, and lasts for at least 2 days. It is a scary symptom. We've now run the gamut of tests, to no real avail - but that's okay. We just needed to know it wasn't life-threatening. Who cares what the NAME is - we just needed someone to help us figure it out, and not treat her like she was a swooning female. No one took her seriously - they didn't understand the severity, and the fear that went along with it. Because her arthritis has seriously disabled her, we finally got her a wheelchair, and when I wheeled her into her drs. office in THAT for the first time, suddenly it seemed they were interested! (maybe all PBCers should try that! LOL!)
We're a family of deep faith, and so much has been learned on this "journey" - so we do thank God for the way He works in our lives.
We're just so proud of "our" site, and it is frustrating at times when some doctors make light of it. It is so extremely helpful - not just for the support, but also for the information on it, and the information everyone shares. We really wish more doctors would look at our site and listen to the group as a whole picture. As individuals, we are single cases. But as a collective group, we tell a whole story - you can see the "big picture" of the illness. Of course there are wonderful doctors who truly do understand - but because PBC is so rare, it seems that many are just unaware of the "extraneous" but very problematic symptoms related to it.
Helen's symptoms: severe osteo-arthritis, abdominal pains, leg cramping, easy and severe bruising, edema, nausea, reduced appetite, digestive problems, dizziness, ringing of the ear, hearing loss, dry eyes, dry mouth, dry skin, occasional nosebleeds, heart rhythm abnormality, among others.
By far, the arthritis and abdominal pains are the most problematic as it affects her mobility, and ability to do things on her own. But she is an exceptionally warm, special, loving woman with a tender heart and a great sense of humor! To be able to live with this disease and still laugh - that is the miracle!
Helen has 3 grown children, 8 grandchildren, one great-grandchild, and another on the way! She loves to read (when she's not dizzy!) and recently became "web-enabled" with Web TV, which she is enjoying greatly. So now she has a direct link to the PBCers right at her bedside! She lives with our family, which now consists of my very supportive husband, our daughter who just finished college, and myself. But when she first came to live with us, we still had 2 teenagers at home - so life has not been dull!
Helen was born and raised in Knoxville, Tenn., but has lived in northern New Jersey since her marriage 58 years ago. Still, she's a Southern gal at heart!
I am 50, married 32 years, have 5 children, and live in Michigan. I was diagnosed with PBC in July of 92 and with Sjorgens Syndrome in 95.
Family......Husband, John works for General Motors as a diemaker.
son,Todd, is 31 and married Darlene in Oct. 96
son, Tim, is 29 and engaged to Charletta (no date yet)
son, Troy, is 25 and married Sara in May 97
son, Tom, is 20 and a 3rd yr. college student.
daughter, Tammy Anne is 18 a just graduated high school in May (5 days after her brothers wedding). She starts nursing school in Sept.
My hobbies are counted cross stitch, crafts of many kinds, bowling and playing euchre . I also do a lot of volunteer work.........
Chairman of 4 blood drives each yr.
Organize & raise funds for bone marrow testing for our county Red Cross.
Paint banners for Cheff Center for Hdcp. Children.
Organize and oversee all funeral dinners for our church of 180 families.
Eucharistic Minister for our church.
And anything else my dear kids say ....".Hey, let me call my mom" for, like golf outings, walk-a-thons, treats for Troy's 4th grade class, etc.
I am also sec./treas. of two bowling leagues and a board member for the 500 Club.
My main complaints of this very frustrating disease is the fatigue and itching. I also am finding I have more trouble with my eyesight and night driving. I take 300mgs. of Actigal 4 times a day and 3 capsules of milk thistle. I have been on the milk thistle only 3 mos. and did see slight lowering of labs in July. My fatigue seems to have improved a little also. I have constant bone soreness but feel this is from the Sjorgens.
In July of 92 I was diagnosed at Mayo Clinic in Minnesota. My doc. here had been since March telling me I had hepatitis and that my liver enzymes were 10 to 12 times what they should be, but he didn't know why. Here they made 3 attempts at a needle biopsy of the liver before getting any tissue to test. The test results showed NO ABNORMALITIES. Then it went on to say the tissue was muscle and not liver !!! That also explained why I felt like I was kicked by a mule. I laughed out loud at the docs. when they then suggested I consent to a surgical biopsy. I ended up sending a 4 page letter to my HMO and telling them either I go to Mayo or you can talk mistakes with my attorney. Thank God they agreed as I really wonder if I would even be here today if I had stayed with that doctor.
The PBCers are a very special part of my life. I am so thankful for finding this group. The support generated in this group is so great !! In 9 months of being with the group I have learned more than I have known in the 5 years since being diagnosed. I want all of you to know that each weekend I list the PBCers and their families in a special book at church so that they are included in the mass prayers for the weekend.
"Keep smiling".....it makes people wonder what you're up to. :)))))
Janice H.
My name is Janice Hurst and I am a 53 year old female with stage IV PBC dx approximately 8 years ago at that stage. I have had a biopsy and it verified the presence of cirrhosis. I am a mother of 3 somewhat grown up children. One of which is married. I have a good husband who has been very supportive and keeps me grounded. My parents are good people, but would prefer to ignore the disease and that's okay for now. My in-laws are the best!
The week after being diagnosed with PBC, my husband was transferred back to Texas where I was raised. I was under the treatment of Dr. Howard Monsour at St. Lukes in Houston for 6 years. He was a wonderful doctor and put my mind at ease about this disease and it's slow progression. I was put on Actigal and immediately all liver function tests were normalized. He is no longer practicing Hepatology, but has gone into research instead. I stayed on Actigal for 6 years until we moved to Bellingham, Wa. where I went under the treatment of Dr. Kris Kowdley at the U of WA.
I went on disability from my job as a corporate travel agent about two years ago when the fatigue got too much to keep me going 8 hours a day at a computer with telephone calls coming in back to back. I am applying for SSDI, but don't have any hopes of getting it at this time. They think I am too healthy. I have never had the problems with itching that others have had. My main complaints are the fatigue, bone and joint pain, sjogren's syndrome(dry eyes,mouth,skin,etc), irritable bowel problems, incontinence(that wasn't fixed right with surgery),and a few other irritating problems that may or may not have anything to do with PBC. I have had two colonoscopies and two endoscopies and as of now, have had no problem with varicies. That is my greatest fear.
I am hoping to be one of the lucky ones that survives this disease without needing a transplant, however, if it should happen I do have a husband that is the right blood type. I hope we will be able to do a living donor transplant if it comes to that.
My sanity was saved when I found the web site address for the PBCers on a flyer from the American Liver Foundation. This organization has opened my eyes to the disease and to the wonderful people there are out there for support and encouragement. Linie was the first person that I heard from and then I went into the chat room and found Jean and Sandra and the others. It was such an exciting thing to find out that I was not alone with this.
My advice to anyone diagnosed with PBC is to find a doctor that will talk to you....and keep looking until you do. The right doctor can make all the difference in the world. I am a Christian and pray every day for my fellow PBCers. We are really in this together and have an excellent organization of truly committed people. My next advice is that if at all possible, get yourself to a PBC conference. They are a wealth of information and friendship. You will find a bunch of fun people with a deep concern and committment to finding a cure and supporting each and every person who has this disease.
Executive Committee, Newsletter Staff, Chatroom Manager, Conference Organizing Committee and PBCers Regional Groups
Hi I'm Jean Haynes. I am 51-yrs young. I was Dx'd in '93 with PBC. After my Biopsy (Stage 2/3), in '94 I was sent up to the Mayo Clinic to be added to the Urso Dosage study. It seemed like for the next few years whenever I would go up to the Mayo Clinic I would collect yet another Immune system related disease. I also suffer from Hypothyroidism, Sjogrens, Myofascial Pain Syndrome (connective tissue disease).
In '97 I found the PBCers on the internet. At which time I got involved in the Chat-room end of the PBCers, and have been working with the chat room ever since. My wish for the chat-room was to be able to share PBC knowledge with those that are new to there Dx of PBC. When I found out that I had PBC, it was very disheartening to me to know that my doctor didn't know any more about PBC than I did. So after stumbling around with PBC For 4 years at that point I felt like I wanted to share an discuss with others in a one to one type of venue, what my feelings were. Also to know that I wasn't the only one that needed to know more about PBC. I have met so many people in the chat room and have made so many good friends.
It was in the chat room in ’98, where the idea of the PBCers conference came about. I have been involved with the conference committee ever since. I find it rewarding to be able to help in some small way to get PBCers together to network about PBC. It’s also great to see how we are all living on a daily basis with PBC.
One of my hobbies is quilting so it was only natural that I would carry that over into my PBC world. So in '98 I started on the first in a series of PBC quilts. These quilts have been an inspiration to us all. They have traveled around the country being displayed at meetings or at homes for regional meetings. They have turned out to be great Education tools to help bring awareness to PBC. I have enjoyed making them for the PBCers. I started the third, in the series of PBC quilts in the year 2000. And the rest is but History to us all.
I have a wonderful family; my husband (John) has been my constant Support system while learning about PBC. He joins me in bringing over to the PBC world his hobby of Golf, and if you join us at the conference its John that has put that together for the past three years. He has also helped to bring the Family members together at the conferences for meetings to network together and learn more about what is going on in the PBC world for the family members as well. Together we work to help the PBCers keep on keeping on.
I'm Jewish, but haven't found any relevance over the years to others. I've had PBC for 8 years now (after diagnosis) and while I'm asymptomatic for the most part, I am very careful about taking my meds regularly. Actigal 300 mg. (2xad), for the past 5 years, Colchicine .5 mg (2xad) for the past 8 years, and Silymarin (milk thistle) (2xad) for the past 8 years. I also exercise daily (tired or not) for an hour and drink no alcohol. All my labs are in the normal range while taking Actigal. I also eat mostly health food and have eliminated a lot of stress in my life.
Jim
My PBC History Male, 57 years, DX 5/1997, Stage 1/2
I first found out that I had something physically wrong in January 1997. I had decided to replace my insurance with another carrier. I had blood drawn for the insurance test. The reply back that they would not insure me. That came as a complete surprise to me, because I felt great. I never had any suspicion that anything could be wrong. I requested the test results back from the insurance agency and saw that the reason for the insurance denial was due to elevated LFT's. Reviewing my medical with my GP showed that I had elevated LFT's for the past several years. This was something that he did not find significant and consequently did not tell me. They conducted several tests to rule out possible diseases. Positive AMA titrations and a biopsy in May 1997 positively identified the disease as PBC. They identified the disease as stage 1/2. My GI doctor started me on Actigall 300mg bid at that time.
I presented almost symptom free at the time. I was feeling more fatigued, but not enough to raise any suspicion on my part. Now, I have become fatigued easier and faster. I have some puritus, dry eye and I do not sleep through the night. My biggest compliant is the fatigue.
On August 30 of this year, I had another biopsy. It had been 5 years since my first biopsy and my physician and I thought that it would be a good idea to see the progression of the disease. My LFT's had returned to (the high side of) normal. I felt positive about the progression of the PBC, but I wasn't prepared for the findings of the biopsy.
The biopsy showed that "portal tracts were present in the biopsy and showed minimal and non-specific changes. Bile ducts are identified and show no evidence of injury." They didn't see any evidence of my PBC. My heptologist had to go back and review my tests to confirm the diagnosis. He is convinced that I do have PBC because of the multiple positive AMA titrations and the positive initial biopsy. I fully realize that different parts of the liver may have different amounts of injury, but not to find any damage is statistically significant. I'm not sure why all of this improvement or if I had anything to do with it myself, but I thought that I would share with everyone what I have done...just because it seems like it ought to be recorded somewhere.
There is nothing scientific about my routine and I wouldn't want anyone to think that there is. Medical science has not studied or researched the things that I have done and consequently cannot validate or invalidate them. I do it because I believe that there are additional forms of healing in addition to our western medical discipline...and I feel like I have to do something myself.
I believe that there may be several possible reasons:
Excellent medical care
Positive mental outlook
Positive support group
Supplements
Spiritual
Excellent Medical Care
One of the best things that happened was when my company moved me to San Diego. I signed up with my medical insurance with Scripps Clinic. The GP whom I found with the help of friends is terrific. He is Joseph Andrews, M.D. The first time that I met him, I told him that I had been diagnosed with PBC and that it would not be a surprise if he did not know too much about it. It turned out that he knew a lot about the disease and had several patients with the disease. One of his first comments was that since I was a male, the heptologist would want to see me right away. I had an appointment to see the heptologist the following Monday. Every complaint that I had, caused them to check me out completely. The fatigue complaint initiated a series of tests to rule out problems from sleep apnea to cardiac echograms and points in-between. My current heptologist is Paul Pockros, M.D. He is very knowledgeable and will listen to those things that come up on our web site. He is current with the research on PBC and keeps up to date.
Positive mental outlook
I've always had a positive mental attitude about the disease. When my heptologist first told me about the disease, he said that normal progression was that I would have between 5 and 20 years before I would need a new liver. Without the new liver, death would be the natural outcome. I never asked the question "why me?" I just wanted to know if there were any actions that I could do to increase my odds. I studied as much as I could about PBC from where ever I could. I knew that the liver had the ability to rejuvenate itself. I felt that I could figure out a way to rebuild new liver cells faster than the old cells would become useless. I had a trust that new research into liver disease would bring good promise for me.
Positive Support group
I had a great group of people around me. My family and friends were always helpful. They always kept me thinking positive. They help me in so many ways. I take a group of supplements for instance; my daughter helps me put them into those sandwich bags. My wife always keeps me thinking long term. She makes my kale tea and buys my supplements. She always helps with my positive mental outlook. Connie went with me to liver education meetings at Scripps and to the support group meetings that followed.
I found the PBCers in 2001 when I heard about the conference in Las Vegas. I really look forward to reading your e-mail posts and have even added a few myself. I consider the PBCers as part of my support group also.
Supplements
I have explored several alternative forms of medicine along with the traditional western medical science. Below is a table of medications and supplements that I currently take. The top section has my medications listed, and the bottom section lists the supplements. The Urso is for the PBC, as you all know. I changed from Actigall to Urso when I changed to Dr. Pockros. He was aware of the work that Axcan Scandipharm has done for PBC and agrees that we ought to use them where possible. The Tenormin is for a condition that I have called Premature Ventricular Contractions (PVC). I have a condition in my heart that has to do with the electrical conductivity through the heart. It causes my ventricle to contract a little before it is supposed to contract. I have been on that med since 1985. I am told that it is a relatively small dose, but it might add to my fatigue symptom.
Medicine & Supplement Dosage AM-PM Purpose
Urso 250 mg 3 x 3 x PBC Med
Tenormin 50 mg 1x PVC's
Chromium Percolinate 400 mcg 1 x Energy
Calcium / vitamin D 500 mg 1 x Osteoporosis
Saw Palmetto 600 mg 1 x 1 x Prostate health
Multi-vitamin w / min 1 x General health
Vitamin C 1000 mg 1 x 1 x General health
Vitamin E 1000 iu 1 x 1 x Circulatory system
Liver Cleanse 320 mg 3 x Liver cleansing
Ginko Biloba 60 mg 1 x Blood flow
Grape seed 100 mg 1 x 1 x Vascular system health
Ginseng 250 mg 1 x 1 x Energy
I have tried acupuncture for about a year. I stopped only because my LFT's did not seem to improve any more with acupuncture than without it. I also didn't have the sense that it was helping. That is a difficult call for me as I am an engineer. We aren't really trained to respond to "feel". We're a pretty quantitative group of people.
I also use kale tea. The tea is made by simmering kale in a pot of water. The water picks up "some" of the nutrients from the kale. I drink the tea cold. I like to eat green vegetables (with the exception of brussel sprouts).
Wouldn't it be funny if the Saw Palmetto turned out to be the significant supplement?
Spiritual
This is listed last not because I believe that it is the least important, but because it is the most personal. I am a religious person, but have never prayed to have the PBC cured. I know that others have for me though. My mother just passed away and I know that she always prayed to ask God to cure me of the disease. I have a feeling that she may have interceded on my behalf. I would never discount the power of prayer.
Dr. Pockros has said that we will do another liver biopsy in five years. I am still on Urso and I still take my supplements. I never did drink too much alcohol, and I probably won't start over indulging now. I'm still fatigued and itch a little, but I am so happy with the news. I wanted to share the good news with you all.
Thanks for your support!
Jim Enos
I was born in 1945 and was lucky to find the best husband in the world. : )) He is very understanding and supportive. We have two adult "children." Stephanie and her husband have 6 children. I am lucky that she lives so close so we can visit lots! Young Jeff is also married and has 1 child. I have one sister who is very, very supportive, even though she lives halfway across the states from me.
I remember as a young teenager that anytime I got near the color purple I would turn very yellow....and we all thought I was darker skin tones then the rest of the family. I had this same "tan" and olive tone. I also remember the odd days of nausea and fatigue. Then in high school I got Epstein-Barr......... Life went on as usual.... Then in 1982 my fatigue was much worse and the nausea was much more often. After a battery of tests my gastro did checked my LFT's and found my liver enzymes high. He then popped me in the hospital for the day and night, to do a liver biopsy. I had mine right in my hospital bed. First he gave me a mild tranquilizer..then gave me a shot of "Novocain." Then all I felt was a bit of pressure...same as if someone was poking you in the ribs..and that was that. He kept me in hospital for the night to be safe in case I bled. At that time I don't think Actigall or URSO were out...so I went on Silymarin.
I always used up my sick days at work....and then some. Usually nausea and severe fatigue would send me home to bed. After sleeping I felt ok. Other days I felt wonderful.and life was good and I would even forget about the icky days...as by now they were "Normal" for me. Gradually I was getting worse. But, life went on as usual. Then slowly about 1994 my LFT's were climbing and I was feeling worse. I cut my work back to part time....then that became too much and I went to even less hours...and then as a fill in for sick people. It got so bad I would come home crying. Finally, I gave up working. It wasn't until 1997 that I filed for disability.....I had never thought of it, but my doctor told me to. At the same time I was sent to my liver docs at Layhe Clinic in MASS, to be evaluated for a Tx. My emotions were all over the place.....happy I would have a chance to live longer and scared at the same time at the prospect of such major surgery.
It was after my evaluation and my acceptance to the program that my doctor suggested I get a computer and see if I could find a support group somewhere. As I didn't know another person with this or even anyone who had heard of it. So, sigh...... : )) as in whew....I played with my computer and in my wanderings I found the AOL chat with Kandy (Kandysfl) and Judy (Liveritup). That was the beginning....they sent me to dear Linie....and here I am. This support group has been a haven in my life with PBC. I have learned so much and found so many wonderful people.
I have had one variceal bleed in 1997....very scary, but mine stopped before the ambulance got to the hospital. My husband was going to be a living donor for me....and at the last minute they decided they didn't want to risk his health...he has odd veins etc...At the time that was very upsetting....For months the Spiritual Siders, and I had planned a "Soul Train" to take me to the hospital..we had a lot of fun. They put together a book for me and everything.....(I love all of you) so I was also feeling at the time as if I also let them all down...silly of me I know. Then a dear friend offered but she was the wrong blood type.
Now life goes on and I am happy. Of course I have those days of feeling extra yucky and having a little pity party but usually a good walk outdoors gets rid on it. Now, I take Propranol to maintain very low blood pressure to hopefully never have another. I also take Actigall/URSO, Prilosec for my GERD, Atarax for itching and nausea. SARNA lotion for an extra bit of help with the itching..especially if it is just my feet. I not so fondly remember days when my scalp would feel as if I had bugs crawling..would make my dear husband check for bugs..giggle...but, it was "just" the liver itch on my scalp. Also take, Aldactone twice a day for edema, and about once a week a Lasic to keep my edema under control. (On those days I do not take Aldatone) For severe nausea I have Phenergan and for the muscle spasms that can go on for hours I have finally been put on a medication, Flexeril. Plus, I use a heating pad. I have also been on Epiver for about 6 months or so now....and also for longer I have taken coenzyme Q10, along with an antioxident supplement, and a basic over the counter (inexpensive) multivitamin and lastly I take Magnesium for my muscles...and it seems to have cut the muscle spasms back quite a bit. Eating plain Romain lettuce...an entire head often daily has increased my blood platelets!
As most of you know I walk ....for my health, sanity, and enjoyment. I walk from 2 miles to 4 miles or more daily. Since I started walking about 3 years ago I have found I am less tired and have gone back down 38 pounds! : )) For pain I am allowed an occasional Tylenol. For severe pain I may take Tylenol with codeine as codeine is safe on the liver. (as is morphine). As most of us do I have good days and the odd bad day. But, I try to enjoy life as much as possible. We have moved to the mountain top about 2 years ago..and to me this is heaven. I am hoping to continue holding my own until the cure is found.
Thank all of you for making this such a wonderful group of folks, and to Linie, for doing all this, and Linda, Joan and all the rest of you, Sandra, Anne V., Glenda, Bobbie (BDROMANS8) , Judy .not from NJ ha ha.....now from NH, Kandy, Kathryn, ( I KNOW I am leaving out names....but you know who you are), a huge thank you to each one of you who works so hard on all the different committee's, and other who find ways to bring in money for our Fund For The Cure, you are all amazing!! Blessings, Joanne C.
My name is John and PBC can affect men also. I’m 41 years old, married with 2 children. Early in 1995 while on active duty in the US Navy my wife Karen and I decided to get additional Life insurance. The insurance company sent a nurse over and she took blood, weight, and history Etc. A week later I received a registered letter from the insurance company saying I needed to see a doctor. I took the letter and went to the base sick call. The doctor wanted to know how much I drank. I explained I was a very light social drinker. Well she was not convinced and continued to insist that I needed to come clean about my drinking. I objected and demanded to see a specialist. After several blood tests and a liver biopsy I was told I had Primary Biliary Cirrhosis (PBC). I was told there is no cure and I would need a Liver Transplant or Die! I found this hard to believe since I was running 2-3 miles a day, biking to and from work 11 miles each way and doing general military PT. I was told I was early stages and it could be 10 to 20 years before I went into liver failure and not to worry. Karen is a nurse so; she and I started researching PBC. After our research we knew as much if not more about PBC than the military doctors I was seeing. It was about this time we decided to retire to our home in Middle Tennessee to be close to family and friends. As it turned out I was not in the early stages as it was first thought and I was placed on the Liver Transplant List February 12, 1999.
My main symptoms with PBC were portal hypertension with severe Esophageal and Gastric Varicies. I also had Gastric Antral Vascular Ectasia (GAVE); which was also a result of the high portal hypertension. The Varicies were deemed uncontrollable after drug therapy, banding, and the placement of a TIPS shunt all failed. I received over 200 units of blood and blood products between July and November 1999. This included over 14 hospital admissions. I also had moderate Acities and Hepatic Encephalopathy. At 6:30am November 9, 1999. I received a Liver Transplant. Everything went perfect. The surgery took 10 hours and the Liver started working right away. I spent less than 24 hours in Surgery ICU. I was moved to my room the 2nd post-op day and was walking with assistance that night. I was discharged from the hospital November 14, 1999 “The 5th post-op day”. I continue to improve, and everything is going great with my new liver. I have no signs of rejection or infection. I hope a cure can be found for PBC soon. My son is 21 years old and has been diagnosed with abnormal liver functions.
I am very grateful to my wife Karen who went thought this life-changing event with me. For my children for being strong and understanding. For my family who took over the day-to-day activities of running our home. For my church and pastor who had many special prayers for my recovery. For my Donor family who in a time of despair and loss decided to give “the gift of life”. And most of all I am thankful for my Savior Jesus Christ, whom without his grace I would not be writing this letter.
Hello! My name is Karen and I live in the beautiful Ozark mountains. I am 44 years old and was diagnosed with pbc in March of 1998. I married my wonderful husband Randy in May and in June I retired after 18 years of teaching theatre, speech, debate, and English. I taught in settings from rural (no running water in some of the kid’s homes) to small town with gang/juvie problems to culturally elite Ivy League bound kids. My master’s thesis was about Helen Keller and Annie Sullivan’s vaudeville act. One of my best “life” experiences was discovering a scrapbook put together in the 1920’s by Miss Keller’s sister that had never been released to the public or to historians. Although meeting her family had an enormous impact on me, the one thing my eight years of research on Miss Keller taught me was that no matter what you are handed, you learn to adapt and overcome. As Miss Keller said in so many words, if you keep your face to the sun you will never see the shadows.
I am known in my community as a veteran character actress. I portrayed Daisy in Driving Miss Daisy, one of the old sisters in Arsenic and Old Lace, The Wicked Witch of the West in you-know-what (and yes, I did get to fly), Sister Hubert in Nunsense I and II, and many other leads in musicals and straight plays. My husband Randy is a professional keyboardist/arranger for Shoji Tabuchi in Branson MO. Our love for theatre and music is what brought us to each other. My gorgeous daughter Meagan is studying to be a gemologist and her last promotion required that she relocate to another state so she moved recently and has a place of her own. (I am experiencing the empty nest syndrome as well.)
My health history has included many pesky problems. I have had numerous surgeries for benign tumors including a reoccurant parotid gland tumor that required radiation in my face and neck area. I’ve also had six surgeries in my abdominal area (C section, a tubal pregnancy AFTER I had my tubes tied, hysterectomy due to a tumor the size of a football, incisional hernia, gall bladder laproscopy) not to mention several other surgeries elsewhere. Sigh. I also am prone to infection. For the last few years I have been tumor free but still experienced tummy woes, fatigue, and then suddenly incessant itching. I also began to become unable to function on my job. Trying to explain simple things like punctuation rules became impossible in my English class. It was very strange not to be able to produce the exact word I was looking for when lecturing or directing. I knew something was wrong. At first I blamed it on stress as I had in the last two years left my husband of twenty years and moved across the state with my teen daughter to start a new life and a new job. By October of the second year I had physically taken a nose-dive due to the stress of losing my dad, sending Meag to college, and starting school all within a week of each other. Stress seemed a logical choice for the symptoms. Oh, and in the meantime I had fallen madly in love with Randy and was engaged to be married at Thanksgiving. Needless to say, I went on sick leave and my world got put on hold, including the wedding.
The fatigue, aches, pains, nausea, and itching were intolerable. I thought I was truly broken. After 15 surgeries in as many years I thought I could shrug off anything. My primary care doctor sent me to an allergist. He suspected my immune system due to the itching and history of chronic rhinitus, colds, infections etc. He then tested for antimitochondrial levels and it came up positive so I was scheduled for a liver biopsy and had my gall bladder out at the same time. The liver biopsy confirmed PBC in stage one. Since I had so many other things like tumors and chronic/systemic immune dysfunctions I am worried at times that the PBC will progress faster rather than slower. I haven’t been able to tolerate Atigall. I received medical retirement from teaching and hope that I will experience fewer colds and flu now that I am no longer near runny noses. The itching is now occasional, but the fatigue, tummy woes, and aches are ever present. I am very grateful that I had good doctors and a wonderful group of people where I worked that listened when I said “something is wrong here” and believed me when I said “I am not myself right now.” I also have peace of mind that Randy is willing to face the future by my side. Life is good.
I am very grateful that the PBCers exist because I know that they are only a few buttons away when I need encouragement. (I am relieved to know that I am NOT the only one who believes bras are a tortuous device.) I had never heard of PBC before my diagnosis in March of 98. Now I read the digests every day and post occasionally. I honestly feel I would have been in a deep depression or feel a sense of great isolation if I hadn’t found this group. This group has given me sunshine when I have had my face to the shadows.
As of January 2005 - I am 54 and four years post transplant. I've been with the PBCers since we first started.
I was diagnosed with PBC in September 1993. After running, I had experienced continuing pain on my right side and someone at the hospital I work at suggested I was having a gallbladder attack. I went to the Emergency Room and while the test results were negative for gall stones, my liver enzymes were elevated. On follow-up with my primary care physician, he suggested that I might have PBC or some other liver disorder and referred me to a GI specialist. Liver biopsy in September confirmed a diagnosis of asymptomatic Stage 1 PBC. My doctor suggested that I take Actigall. However, having no symptoms and being hypersensitive to drugs, I declined.
I started itching the next year and tried Actigall but it seemed to make my itching worse, plus it nauseated me - so I stopped taking it. After tolerating the itching for a while, I started taking Questran. I also noticed that I tired more easily. I was also in an emotional and mental tailspin. Still in denial, I struggled with my diagnosis and its implications. I was depressed and emotionally wiped out.
In July 95, I went to Mayo for a complete workup, where they did a repeat biopsy, ultrasound, lab tests, x-rays and ERCP. The result, which they gave me the next day, was Stage 2 PBC. One of the most gratifying parts of that experience was actually meeting a liver transplant patient. I was actually quite fearful of the whole transplant experience, mostly because it was such an unknown. But when I realized that people actually did survive PBC, I was ready to be more proactive about my situation.
I went home and let everything settle in. I was glad to go to Mayo but, frankly, disappointed in what little the medical community had to offer and felt that I needed to have some control over this disease. I began exploring alternative medicine and wellness activities - and what is now known as integrative medicine. I read lot and tried a number of different modalities including shiatsu massage, metabolic clearing, a nutrition regimen, herbal supplements, energy therapy, homeopathy, etc.
The simplest and most effective therapy for me was been nutrition. After going through a liver detoxification regimen, I met with a nutritionist who helped me to understand how the liver processes foods and who gave me a diet to help my liver (lots of dark green and orange vegetables, whole grains - no fats or processed foods or foods with additives.) After 2 weeks on this regimen, people were coming up to me and asking me what I've been doing, because I looked great! I have found that certain foods exacerbate the itching - no brainers really - stuff high in fat. I drank lots of water, exercised and tried to stick to my diet.
At the same time, one of the most influential things that happened was finding the Liver Support Group on the internet. Here was this collection of people with auto-immune liver diseases and Oh My God! Other people who also had PBC that I could talk to! What a relief! Previously, all I had was medical gobble-de-gook from doctors who couldn't give me anything concrete that I could do for myself.
As hard as I tried though, my PBC progressed and I finally got listed for a transplant. I waited on the list for about 3 years. At first, I was very disappointed because I thought that I would beat this thing by myself. I denied how sick I really was.
PBC has been an incredible personal journey for me and resulted in major and profound changes in my life. First - I met Linie and watched as the PBCers grew from a collection of 6 or 7 people to the thousands we are today. I have said many times that Linie is truly an angel and proves to the whole world that one person can make a change. I got very involved with the PBCers and its research and fund raising initiatives. They gave me a purpose - which is key because the second profound thing that happened to me was a complete realignment of my view of life, my disease and what it all meant.
When I was sick, I read Viktor Frankel's book - Man's Search for Meaning. He was a psychologist who survived the Holocaust and studied people in concentration camps during WWII, and wondered why some survived and why others did not. He developed a couple of theories that changed my life profoundly - one was that "man can survive anything - even the most awful things…if they have meaning". And the other was "the only thing you can ever control in life is your attitude." Well, these aren't rocket science, but they really sunk in for me and from then on, I was a changed person and used the fact that I had PBC to help others with PBC - THAT was my meaning in life.
The third thing was my transplant. I can't tell you how having a positive attitude made things so much easier and I believe allowed me to heal faster. Before my transplant, I was in a very good place - spiritually, mentally and emotionally. I had put my life in order and had learned how to enjoy, no savor, each and every moment.
I continue to believe in the power of the mind/body connection. Whatever feels good is healing and whatever is good for the soul, is good for the body!
Received her gift of Life June, 2000 and has run in two half marathons! WTG Kathryn!
Kathryn is our PBCer who helped bring the American Liver Foundation and PBCers together, along with our history making research project that is taking place right NOW. Without her hard work and endless group support, researchers wouldn't have taken notice of the PBCers.
I hate this picture but it's all I have. Don't know what a bio is supposed to contain but I have autoimmune cholangitis (PBC without the AMA), and autoimmune hepatitis. My mom has PBC. She was diagnosed in 1995 at the age of 66, at the same time I was dx with AIH at the age of 46. In 1999 I was also dx with PBC. I am single, no children, no significant other. Kay in Austin
Keith K
Linie wanted me to send my biography because I am one of the few men with PBC. The bright side is that I get to meet so many women. I flirt, tease, cajole, kid and taunt them all. I am a bad boy.
I was diagnosed in 1998 with stage 2 PBC. Since that time, my LFT's have been lowered and stabilized. I also get fatigued easily, but I suspect that that's because I'm out of shape. I used to have severe itching and dryness, but those symptoms went away some time ago. There is hope! The only reason we found out I have PBC was that I was being monitored because I'm on Zocor. Therefore, my liver enzymes are checked every six months. All of a sudden, the alkaline phosphotase was way up amongst other enzymes. This lead to a biopsy and the diagnoses.
We have two children who we are very proud of. There were both preemies. Mindy is 44, and when born, she only weighed 3.1 lbs. We have always taught her to be self-sufficient. As a result, she has her Masters in Special Education, and works as a programming specialist at an ARC. She is the one who tests the clients and develops programs for them which they are capable of doing. She also has a private, full time practice working with learning disabled kids in her home. Finally, she teaches Sunday School at her local synagogue. She's a busy gal.
My son, 42, was born at 3.14 lbs., worked for me for ten years in the party equipment rental business. He finally quit because he just didn't like it. However, he self-taught himself to be a computer expert. Now he supervises Prince William County, VA information technology.. He recently married a woman who is older than he, so it looks like we'll never have grandchildren. However, we love her as our own daughter. She is as crazy as I am.
Many of you have asked me why I'm called a pitbull. This started because I was very vehement in an effort to get the name of PBC changed. Linie insisted that she wanted our efforts focused on education of the public rather than a name change. However, I was just sick and tired of people, even health professionals, equating PBC to alcohol related cirrhosis. I insisted on keeping up the fight, so Linie named me The Pitbull (in a kidding way). It stuck. Since then I have had other friendly disagreements with Linie and her Board. So the name lives on.
I am an avid participant in the chat room. I think it's lots of fun, and I get to tease a lot of ladies. I know that some of you say you're challenged when it comes to computers, but if you're persistent, you'll find the chat room to be well worthwhile. I guess the easiest way is to enter from the PBC web site. But it is slow. Sandra and Jean can help you download a program called Pirch which is a lot faster way to reach the chat rooms. Jean's ICQ number is 4778091. Her e-mail address is jeanok@pbcers.org. Sandra is 13924028 and IMRanch@aol.com. They are both lovely people, and will be happy to help.
My background is in the party equipment rental business. We had outlets in Shrewsbury and Oakhurst, NJ. I sold the businesses and retired in 1996. Linie was kind enough to publish the story about the Hall of Fame award I received from the American Rental Association.
Just this year, I had triple by-pass surgery. Last year I had a TIA and a pacemaker implant. Old age is getting to me.
Have I rambled on too much? But I have a lot more to say. Oh well, meet me in the chat room.
Keith "Pitbull" Klarin
Kris
I am 48 years old, have a wonderful husband and 4 children. I must confess that this is the first step I have taken in dealing with this disease since my diagnosis last March. Well actually in March I was miss-diagnosed with autoimmune hep., and when the steroids shot my #'s sky high, the Pathologist sort of said oops, missed this one. After another bioposy PBC was confirmed.
However, the good new is I have no symptoms and the Actigall seems to be working. At any rate, I work in advertising, and Friday (today) are our busiest deadline day so have to sign off. I just wanted to commit to the first step in being able to talk about this and share my fears, concerns, etc. Talk with you soon. Stay positive.
Lacy Brewer
Hello Everyone :)
This is a open to letter to each and every one of you. This is my gift to you because all of you mean so very much to me.
December 9, 1999
I had set the alarm clock to get to the post office as soon as the doors opened. I had gotten my husbands Christmas Gift over Ebay and it was coming from Australia. I had sent a money order off and it came back needing forty cents more postage. So there was a week delay. I had to get back to the post office and I had to spend $ 23.00 postage to get it to Australia in time for the gift to get back here for Christmas. Well I got there and took care of all that. As I was leaving the post office a preacher friend stopped me and we talked about me and my family, Christmas, and my health etc. I told him if something were to ever happen to me that I wanted to have his organ player sing and play at my service. Black Lady with a lot of talent. She'd have everyone rocking and rolling which is what I would of wanted. Well I left the post office and I was just starving. I hit the Jack in the Box drive through and got me two tacos, coke. I was exhausted by now so I went on home. The first thing I did was eat a taco and get on the computer and email the Lady in Australia to let her know what had happened. While I was sitting here typeing to her the phone rang. I got up and answered the phone. " Hello my name is Mickie (lady) and I'm from the Organ Transplant Office at University Hospital. Is this Mrs. Brewer?" I told her that was me and she said " Well we have a young healthy liver a waiting you"! Well I just shut down folks! My heart was beating so fast I think it should of burst! So many things running through my mind at one time. I even told her was she sure as I was not on the 2B list? She said two people on the 2B list prior to me did not answer their phones or beepers and I was next. It took her about 10 min to get me mentally in shape for the 45 minute drive into San Antonio, Texas. She told me to drive safely but to get a move on they were ready for me. She told me to bring all my medications. I took the Taco sack and dumped all the contents in the floor!!!! hehe Raked all the pills etc in the taco sack, grabed my keys got in the car and took off. She said not to pack or anything just get to the hospital. So thats what I did. I got have way to the hospital and saw that I had left the Taco sack behind. lol lol I was a wreck. The thing was I wasn't scared. I cried all the way, 45miles, for the donor family. I don't know if it will effect others that way? That is just the way it came to me. I asked God to be with the donor family and I thanked God for sending me the liver to be well. It was a real rat race on the highway. I had my police radar detector on and flashers and i went about 80 average all the way. People were actually having road rage over me. lol People saw my flashers on and the people in front weren't moving and they were pulling along side making jestures, lololol,, to make them move over for me. Not so nice jestures some of the time. hehe Well I got about 3 miles from the hospital and I had to start talking to myself. " Now Lacy get your act together. There isn't anything you can do for that family right now except calm yourself down and be at a decent blood pressure,pulse etc rate so everything will go well in surgery. So the surgery will be a victory and their sons liver will work and be a good match". So by talking to myself I got everything under control. I parked the car and got right out and walked up to the hospital went to the 12th floor and announced I was there to get my liver! Now let me back up here just a minute. I had absolutely no time to call anyone except my children and my husbands job. Kids weren't home, hubby was on the train. He is a locomotive engineer. My youngest daughter was the only one I finally got in touch with. She got my other daughter somehow and they were both at the hospital very shortly after I got there. One of the railroad men came from work to make sure I got there ok in Bob's absense and he and the girls and I said a prayer. Lord then here came the three ring circus. Blood, X-Ray, EKG. 21 tubes of blood drawn. then the surgeons came in, then my doctor. Then I had to take a shower with some special soap. Then back on the gurney and down to surgery the floor below. 11th floor. All sorts of cute interns and residents and doctors talking to me and the girls making me feel real real comfortable and not scared. I got a margarita IV and I was feel'n real real good. They wheeled me into surgery and I had told them that I had a bad tail bone from a childhood injury and to be sure and put extra padding in that area. They did cause the nurse showed me. I don't remember going to sleep??? I just did. lol
I don't remember too much about the first day at all. Vagely? I didn't hurt though. Slept mostly. They took the breathing machine out the next morning and all the tubes etc. Everyone was saying how well I looked. What a easy surgery it was. Only four hours on the table. I didn't have to have any blood at all. It was a perfect match. I was in ICU four days. But only because they didn't have a bed for me on the surgical floor side. If they had I would of only been in ICU for three days. I want all of you to know the instant the new liver was transplanted I was well. NO MORE PBC. My husband said my color turned back to baby pink as soon as he saw me. The third day I felt like running to town and back except for the pain from the surgery. But the fatigue you all are expeiencing, the itching, the yellow, the not being able to sleep, the constapation all of it goes out the window immediately. God God it is amazing. All the sores are gone. All dried up and left within a week. I also lost 25lbs. from fluid. Thats always a nice extra :) For us women anyway! hehe I was in the hospital five days all together. The day I went home I was crav'n Mexican Food something awful. Still am? I also had a real longing to drive by the donors home. I didn't because it was late by the time I got out of the hospital and it was 32 degrees and I didn't want to get sick. But the longing was sure there. Real Bad. Well that is pretty much it except I have to take an immense amount of pills. But the best part is I got rid of all the old ones. So thats good too. I donated them all to people who don't have insurnance up at the Clinic Pharmacy. But they taper down as the year goes by. Just a lot to take at first. Anti virus, anti bacterial, anit fungus, anit rejection. quite a few of those. Stuff to swish in your mouth for thrush, blood pressure medication. Lord I have to still look there are so many. Now one last thing. I want all of you to get busy doing back exercises. I want you to do it everyday. I didn't and I'm sure paying for it. I didn't know about the strange table they lay you out on in surgery. It looked like a space ship to me? Good Drugs? lol lol Well anyway it is like a clam. Your laying there with your back arched for hours on this sorta hump. Nothing has hurt me except my back. I'm taking muscle relaxers and heavy pain pills for it now. But I think if I had done the exercises it would of been easier on me. The other thing is after the surgery you are going to experience numbing in places in your stomach. Patches where you have no feeling at all. A lot of this will return and some of it might not? Due to cutting of the nerves. The insesion is very long. One side of the upper tummy to the other side and a short one between the breast area, they call it a Mercedes Cut! lol Mine turned out real neat and no trouble with infection. Just wanted you guys to know what to expect. I have recieved so many cards and letters from all of you that I have never met and I want to thank you from the bottom of my heart. These cards have ment so much to me and my family.
Now................The most important thing of all:
JAMES ANTHONY ANDERSON
My Donor
The third day in ICU I was still very troubled about the donor. I knew it was a boy 18 and the accident had happened in San Antonio, Texas. I called the local funeral home and had them get on it for me. I bet I was really flipping everyone out in ICU asking for Yellow Pages, White Pages etc. lol Anyway it wasn't hard to find who the donor was at all. The memorial service was to be held on Monday morning at 10am. I rounded up all my family and had them attend the service. James or Big Bubba, as his family and friends called him was a very popular young man. Over 300 people at the service. Big write up about it in the local newspaper. He graduated this year and was going into the Air Force on Dec. 15th. He had a girlfriend. He had a younger sister 7 and a brother 10. James was 18. He was a memeber of his hometown volunteer fire department. A Christian, good student and just a all around great guy the pastor said. James was killed in an auto accident. He was with his girlfriend and her sister. He was not wearing a seatbelt. Massive head injuries. The wreck happened on my dads birthday. The 6th of December. He died on the 9th of December. The wreck happened where I met my first tranplanted friend. Loran Greene. He is a PBCer. We met for coffee at the very place James was killed at. Strange. The parents left word for our family in the newspaper they were very eager to meet me. I assume they must of known my family was at the service? I contacted their preacher and said if there was ANYTHING that I could do to help them have a better Christmas to just let me know. I want so much to do something. ANYTHING! To give back. I have not recieved a call from the Andersons. But I think I will soon. I pray that something goes nice for them. You know they only live 15 minutes from me. The grandparents live two miles from me right in my town. This is a very special story. This liver was ment for me. A true gift. A amazing gift. God started preparing this table two years ago. When he got the table just like he wanted it he called and invited me to dinner. Everything was bliss. Beautiful linen, crystal, candles, soft music, the best bone china. It was some meal folks. Don't ever be afraid of it. When he invites you go! For he will invite you when he is ready.
If any of you have questions that I have not answered please email me at LaceeJay@aol.com. I'm still not able to read the digest everyday and I want to be sure and let you know anything that might be of interest that I might of forgotten. It might take me awhile to get back but I will do my best :)
Merry Merry Christmas
I love you all,
Lacy Brewer
Lauren
My name is Lauren K. and I am 26 years old. I started having abnormal liver function tests about 5 years ago. I heard everything from "you're taking too much tylonol to you have hep." I was also told a number of times that I was anemic. I have suffered from fatigue for the past 3 years and was finally dx with PBC this past dec of 98. I'm still going through tests and going to new Dr's. Everyone is stumped because I am so young. My days are long and most of the time it's an up hill battle. I have severe fatigue, many stomach problems, circulatory problems and pain in my joints and muscles. I am still working, but find most extremely difficult to get through. I live in Somerset, NJ with my fiance to be. he is very supportive and stands by me all the way. I am currently in stage 1 we think, but are still trying to narrow everything down.
I do get the newsletter, but would like more info on current research or anything being done for this disease.
I want to know if there is anyone I can talk to who has gone on disability. I am still working, but find that most days are interupted with my health issues. Is there someone I can talk to about this?
Hello Everyone,
It has been a long while I was an active member for a while and when moved to a different state dropped out of site..
I was dx in 97 after three years of "gee your liver count is elevated, so lets do blood work" The first year the Dr said my liver was regenerating itself and the same the second year well in the third year they decided to run alk/phos tests....and guess what they figured out what I had..Then in Jan of 98 they did a ERCP which showed no scaring in the bile ducts....then the fol
