Meet
Some Of Our PBC Daily Digest Subscribers
Digest Moderators
Linie M.
Diagnosed in 1995 after being on the medical merry-go-round for a few
years and misdiagnosed with Lupus. Out
of fear and need, I founded the PBCers Organization and it was a life saver for
me. Each day I’m amazed how the group has grown and the support and love
offered by PBCers around the world.
Age 56, Tim and I share a farm SE of Houston with two ornery horses,
four dogs, one cat and numerous cows. I have a wonderful son Ryan (25), lovely
almost daughter Brenda (24) and a very supportive family.
This year I’ve had the honor of attending PBCers regional meetings
across the
When diagnosed, I feel it is important for patients to understand that
PBC is NOT a death sentence and there is life after PBC diagnosis. Do what you can, when you can…..let those
dust bunnies visit longer if needed and so what if there’s a few weeds in the
garden. Keep a positive attitude and
throw in a little humor. Enjoy today
because tomorrow could be worse!
Digest Moderator PBCersDigest
Linda L.
E-mail PBCersLinda@ PBC Stage 4 &
AIH ... home was NYC, then a few years in TN, now it’s the Outer Banks of
NC. I'm an insulin dependent diabetic on pump therapy and have a several
autoimmune disorders. My Mom had 15 children, she stayed busy or she was nuts
as I tell her all the time. Married with 2 children, 5
stepchildren and 10 grandchildren. My youngest son is in
Digest Moderator PBCDigestsMod2
Sandra T.
Usually e-mail from address IMRanch@, 63 years old and live in
I take my meds, exercise, try to eat right (enjoy a glass of
All I need to do is look at my granddaughters to know I will continue to do as
much as I can toward finding the cause of PBC, not only for us but for future
generations. The researchers are getting so much closer and this group
has
been a part of it.
Digest Moderator PBCDigestsMod3
Subscribers to the PBC Daily Digest
Gerry
Hi, my name is Gerry and I live in
Arwen
MI, PBC Stage 3, Sjogren's syndrome, arthritis, IBS, etc. 55-year-old widow. Interests include writing, consuming
books, Bible study, classical & country music, photography. Placido
Domingo &
Julie F.
Born outside
Karen
Karen,
Born --
Most bothersome symptom of PBC - Fatigue
Military husband -- lived where ever his orders took us. :)
Married -- two daughters, two stepdaughters.
Four grand children -- two boys, two girls.
Son-in-law left for
I take it one day at a time and do what I can do! I found the PBCers in 1998, I think. I lived
in denial for three years before I finally decided the Dx wasn't a mistake. So
glad I found all of you. Have a great day
Carol M.
Dx 12/99-stg2-age 59. I'm from
Peggy A
I have PBC Stage 3 and Hashimoto's Thyroiditis, diagnosed in November 2002,
biopsy in December. I am originally from Queens NYC, moved to Somerset
county New Jersey 25 years ago. I have 9 siblings, 7 brothers, 2 sisters.
Both sisters have the Thyroiditis and some arthritis but so far neither have
PBC. So far none of my brothers have any auto-immune disease that I am aware
of. I am married and have 4 children, two grown and two still at home -
both boys age 15 and 11. I work full time usually 9 to 10 hours a
day. Sometimes the fatigue is just awful. Sleep doesn't seem to
help since I wake up every few hours so I never feel rested.
I have been on URSO since diagnosis and my alk phos dropped from over 800 to
around 430. I had terrible itching at first, (bloody shins and forearms
and really itchy inner ear, etc.) Urso took care of some itch at first
but not all. I was part of Dr Bergasa's study using Gabapentin last year
and that has stopped my itch almost completely but makes me foggy sometimes.
I still see Dr Bergasa quarterly, even though she moved to
I truly appreciate the effort of all those involved in this organization.
This can be a lonely disease, since no one really understands what we go
through, except for those with PBC that I read daily on this digest. It
can be so uplifting to hear the good stories and so informative to hear what
others have tried to alleviate some our common complaints. Can't wait for the conference next year to meet some of you in
person.
Paula
Age 50, PBC stage 3 DX 4/04, reflux -- born and raised in south suburbs of
Jeannette
65 PBC/AIH stage 3/4 dx'd 98 after 10 years and 5 doctors wondering WHY
my LFTs were elevating. I am asymptomatic and AMA negative and my doctor says I have probably had this condition for 25 years, just
very slow development. Also one of those who LOST weight
before final diagnosis, and can't seem to get it back.
Born and raised in
Angelie
I seldom post and have had a hard time finding the time to read as much as I
would like because of a too busy life style. I was diagnosed in 1995 and
promptly joined the PBCers when we were only 300 members strong. The next year
I started university after being a stay-at-home mom for 17 years. I finished a
BSc degree in Health Education and have now moved to the other side of
I work 80% of the time as an addictions counselor with the
Anyway, I came home from work today and crashed because I was so tired. What
time will I get to sleep tonight? Fatigue is my biggest concern and itching
follows as a close second. I had a rough time after diagnosis for a few years,
when PBC was all I ever thought about. I read every article there was to read
on PBC from all the university databases. Now, I am back to living. Hope this
wasn't too long-winded for one posting.
All the best to everyone.
Edmonton
Diane JB
I'm 62 years old. I grew up in Chicago, worked as a medical
researcher, then a teacher, got married, had 2 children, moved to Salt Lake
City, became a nurse, got a masters degree, divorced my husband, married a
better one, and worked for the State of Utah for 20 years. Last year I
became a grandmother. My daughter had a son and my son had a
daughter. ALT, AST, and ALK PHOS tested normal in March of 1986 and
elevated 6 months later. It took eleven years (
Anne Marie
Hello to all our PBCers
My name is Anne Marie and I have had PBC since 1992 that I know about. Had
biopsy with no stage named in 1992.I am married almost 51 years and have 5
children. Twin girls and twin boys and one single son.
We also have 8 grand children. The oldest grandson is getting married on Aug.
28th. Simply cannot believe where the time went. I also have psoratic
arthritis, osteoporosis, and Sjogrens and am a retired RN who has forgotten how
to spell. Fuzzy brain.
Love and peace to all
Rita H.
Hello everyone. My name is Rita H, age 46. I live in central
OK. I just completed treatment for Hep C in March. PBC was actually
discovered in Dec of '00, but I was not told until Nov. '03 due to a mistake at
my doctor's office. I am married, have 3 daughters, ages 25,17, and 9. I pray they do not end up with this
disease in the future. I lost my only sister to this in March of
2003. She would have turned 57 June 12. Joyce suffered terribly
from this, but because of other severe health problems, was not a candidate for
transplant. I miss her very much. I do take Urso 250, and Prevacid,
and the calcium/Vit D supplement for osteopenia. Most days I feel pretty
good, especially early in the day. So right now, tiredness and joint pain
are my most bothersome problems. (& of course fuzzy brain :) Anyway,
I just want to add that this group is a wonderful place to learn, and feel not
so alone in dealing with everything going on. I think at this time
I am stage 1-2. Take care, all! & a big thank
you to the ones who make this possible!
Jeannie
My name is Jeanine and I am an American (ex - NY, Houston and Vegas) now living
in
Carol R.
Carol R from
Bonnie
I guess I'll introduce myself. I'm Bonnie, sixty years old. I've
been married to Ralph for 38 years next month and I have two children - Rob, 37
and Karen, 33. Rob has one daughter who is 8, my only grandchild.
I've decide to join in the Mayo study and my daughter and granddaughter have a
lot to do with that decision. As far as I know I'm the first in my family
with PBC.
I take my meds, exercise 6 days a week - I'm trying to lose those nasty extra
pounds by walking away from myself. I still feel good most days - I'm
fighting trying to get my blood pressure under control. So far, it has
been a loosing battle but I'm going to win.
Bonnie, dx 3/04 stage 2, NJ
Gayle
Hi everyone! When I found the pbcers, I found a wealth of
knowledge and information about a disease that no one really knows. Sure some
of the readings were scary to me but I put them in perspective to how it
related to me personally. If they were helpful, I thanked the person who took
time to answer if it did not relate to me I made notes just in case I needed
this information down the line. I asked the pbcers before asking my drs.sso I felt
like I was somewhat informed and I have felt a sense of empowerment over my own
body because of this group. Let us all remember that this is a support group
made up of wonderful, caring individuals who truly care. Let’s keep this a
support group for everyone. Provide information and let each individual
make her own decisions about their futures. This
wonderful website was established to inform and support any person dealing with
pbc. Let’s continue this great undertaking.
Gayle dx10/03 stage1-3
Jana M.
I am Jana
M. and a Registered Nurse. I live in Olive Hill, KY. I work at a
Public Health Clinic here in Olive Hill. I was 33 when I got my dx. of PBC in Sept. 2003, and like everyone else, I
was scared to death. But thank God for the Internet. I began to
research, and found you guys, and realized that I did not receive a death
sentence. I have one daughter, 7 years old. My husband and I have
decided to try to have another baby. I want to get pregnant in Aug.,
Sept., or Oct. That way, when I am off for maternity leave, my daughter
will be out of school for summer break. I hope it works out. I was
first started on Actigall, 600 mg. a day. My labs came down some, but
were never back to normal. In Feb. of this year, I started seeing a new
doctor, a Hepatologist. He started me on URSO 1500 mg. a day. I had
my 3 month check-up in May, and all of my labs were completely back to normal,
Thank God. I do not have any symptoms of PBC, and never have, well maybe
a little fatigue, but nothing I can't handle. My PBC was found because my
Cholesterol was high, and my family doctor wanted to put me on Lipitor, and me
being a nurse, requested we get base line LFT's. He called me the next
day and informed me that my LFT's were abnormal. That started the journey
to my final dx. I had a paternal aunt who had PBC. Her's was not
dx.until she was in the later stages, so she eventually died from cirrhosis of
the liver, but she was in her late 60's when she passed away. Well that's
a little about me. Feel free to e-mail me anytime. Praying you are well
Jana, Olive Hill, KY, age 34, dx. 9/03, early stage.
Marla
I've just
turned 62, was dx'd in 1983, transplanted in 1990, and have just been diagnosed
with recurrence of PBC. My first round with PBC, which wasn't diagnosed
until I was in a late stage, was pretty awful, and learning that I will undergo
this disease again hasn't been a happy thought. As horrible as the
disease itself was (severe itching, fatigue, nausea, diarrhea, painful eyes,
memory problems, ascites, etc., etc.), it also was the cause of the
end of my marriage, loss of my home and break-up of my family, so it was indeed
a very unhappy time, and I'm still sometimes amazed I survived through it
all. But I am 14 years out from transplant, have a stable home
life again, and only now am in the beginning stages of PBC; I believe
it will be a long time before I get into the later stages and I feel
very lucky to know that the drugs are improving all the time, that new research
is being done, and that there is always new info available through this great
group. My first time around, of course, there were no PBCers --
there was no internet for that matter! In all those years before my
transplant, I only met one other PBC patient, and finding information was a
difficult task. Believe me, I learned everything
the hard way. I hope you newbies out there realize how lucky you are to
have this digest, and the wonderfully informative people, available.
My grandfather had pernicious anemia, and several offspring on his side of
my family have had autoimmune diseases. Besides my PBC, I suffer from
several other related problems (thyroid, arthritis, Sjogren's syndrome,
autoimmune colitis and rhino sinusitis), both sisters have thyroid problems,
one has Epstein Barr syndrome and chronic fatigue; also two cousins have
multiple sclerosis, another has lupus. So I have to believe that there is
a genetic predisposition. Maybe someday researchers will figure out what
triggers the disease and find a means of prevention. The more I've
learned about this disease, and other autoimmune diseases, I realize that I'd
had small symptoms as early as 12 years old, but of course I didn't connect any
of them with PBC until these many years later.
My current partner is currently undergoing chemo for lymphoma, which should
probably panic me, but having been through so much myself already, I find it a
lot easier to deal with his problems. I've become a strong person over the
years; I've learned what my limitations are, and I strive every day to
maintain my own health the best I can, which includes eating healthy (but not
strictly dieting), exercising (swimming an hour every day and walking), and how
to fight the depressions that nearly destroyed me all those years ago.
Since my transplant, I've lived to see my daughter happily married, and my son,
who was 11 at the time, is now finishing his second year in medical school
(the same place where I had my transplant -- one of my doctors is, in fact, his
mentor). I fought hard to survive but I've never regretted my
decision to seek a transplant. By the time I need another transplant, I
will be too old, and will have too many other health problems to be considered,
but I am grateful for the years I have been granted. I want to hang on as
long as possible! I'm way too curious to see what happens next......
Thank you Linie, and Joan, and all the others who have made this forum for us.
Hugs, Marla
Janice H.
I, too have enjoyed reading everyone's stories. You
can read mine on the web site as well as my poem. I,
too was diagnosed at stage IV in 93 and have no end stage liver problems. I won
my SSDI based on my age (55) and the severe fatigue I endure. I started on
Actigall and then was put on URSO when I moved to
Betty
I am 48 years old, have two kids, and three step kids. I can't call them
children because the majority of them are over 30. They have given us 13
grandchildren.
I was dx'd
with PBC in Dec. of 2003. I am in advanced stage 3. The only thing
I suffer from is fatigue, and some minor itching once in a while. I work
four 12 hour days a week. It gets tough sometimes.Like a lot of folks, I
ran to my computer to find out all I could about PBC. I bought tons of
herbal vitamins, which my dr won’t let me take. I tried a no protein
diet, which didn't last long. The only thing I abstain from is alcohol,
and I don't smoke, so that's not a problem.
I don't post very often, but I read every day. At one point I quit the
newsletter because of personal reasons, but I came back a
week later.
Glad to meet you all...... Betty from
Lauren D.
Hi, my name is Lauren D. and I was
diagnosed with PBC in 1999, stage 2/3. For years prior to being diagnosed
I had so many symptoms that no one could figure out what was wrong with me, so
they labeled it "mental problems"! I was actually relieved when
I finally had a diagnosis of PBC that explained all my symptoms.
I was born in
I was a Registered Dental Hygienist for
15 years and loved my work. I had to quit and apply for SSDI in 1999 due
to the disabling fatigue, dizziness and widespread pain. I was also
diagnosed with fibromyalgia, sjogrens syndrome, osteoporosis, depression, IBS,
and GERD at the same time. It took 2 1/2 years to get approved for SSDI.
I've had a live in boyfriend for the
last couple of years and he is very supportive. My previous husband
divorced me when I got so sick..
I love animals, gardening, reading,
garage saleing and helping others.
I'm making plans to attend my first PBC
conference in 2005!! I'm so excited at the thought of meeting you all!!
Hugs,
Lauren,
Jennifer D.
Hello everyone, I do not post much but was wondering if anyone could help
me. I have read some posts about itching but can't remember them
all. I am 34yrs and was diagnosed a year ago. I don't know what
stage I am in but I am itching really bad.
I feel like at times that I am going to claw myself and it drives me
crazy. I am on Urso 250, 4 times a day. I stopped taking it for a
little bit then got back on it. I did notice that while I was off the
itching was not as bad. I try to take warm showers and then rub lotion on
and that helps a little. I do go back to my dr. in Aug. and will ask her
but until then can anyone help me.
Thank you and God Bless.
Jennifer D., NM,34, unknown stage,dx 7-2003
Bea
I first diagnosed myself from a medical CD by putting itching, spots on chest
and fatigue into the search facility. Up came PBC which fitted in with
all I had been feeling and suffering for at least 12 years. My daughter said to
let the doctor make a diagnosis, but as it said death would result within 10
years, I took a printout to the doctor and demanded tests. The nurse at
the specialists said that although there was a support group you could join,
most preferred to live out their own life without becoming too involved with
their illness. It is fortunate that I found this site, because that was 6
years ago, diagnosed at stage 3, and at the moment I feel just fine.
The CD also said that PBC could be triggered off by estrogen, so the birth
control pill and HRT aggravate it, and that it was familial with each
generation (usually females) starting a little earlier.
Another interesting fact I read in a magazine was that 'washing out' the marrow
of the bones, and putting it back minus the problem antibodies, is becoming
more common in cases where antibodies attack the various organs, and sometimes
removing a gland behind the breastbone which forms antibodies. Does
anyone know any more about this?
Bea, stage 4,
Debbie
This is my first posting to this group. I have
belonged for at least a month. My situation isn't very remarkable
compared to all of yours, but it's very real and life-changing in my home.
After many tests, biopsies, endoscopies, etc, I was diagnosed with PBC in
1998. This year my levels soared again and I was found to also have
AIH. My worst symptoms are the fatigue and the muscle and joint
pain. My youngest son knows when I'm having a bad day because I walk like
a monster. (I'm sure many of you can relate.) I am on many
medications including steroids and Imuran, which don't seem to be working
effectively. I'm very scared about what my future holds if I don't
respond to these medications. And I can't wait to get off the
steroids! I can really feel the aggression some days that they cause. I
don't know what stage I'm at or my Meld score. My last biopsy showed
bridging fibrosis crossing into cirrhosis.
Thanks for all of the postings I have been reading. It helps me
understand my diseases and put my life in perspective.
Take care, Debbie
Jennifer
Hi...I've never written to this site, even though I've known about it since
1999! My name is Jennifer and I'm in the same PBC boat...I guess it has
to be "something" for each of us in life, yes? This
particular boat does manage to stay in tact for quite some time, as a note of
encouragement for those that have just been diagnosed---One immediate
goal, is to keep it maintained or calm in the water, so to speak. A
corny but helpful visual, regardless of what we're talking about...
I'm in
the 4th stage...I've just turned 50, which I am very happy about, since I
had more than a couple of docs tell me when I was diagnosed at age 45,
that I needed to "prepare" myself---for a transplant or for not being
able to get one in time. They meant well, but guess what? They just
didn't know enough and were wrong. It's amazing how many well meaning
doctors think they know about this disease, but really, I just don't think but
a small percentage of them do understand it...So, in my experience, the two
things that helped the most when things were at their worst were:
Always
schedule something restorative or comforting directly after each hospital or
doctor visit---a call to a positive friend, a massage, an acupuncture
appointment, any thing that was counter to the weight and fear that I felt when
I left the Western medical world...Don't get me wrong, Western medicine is
exceptional in it's way and certainly Ursdiol is a miracle, but the experience
of being thrown into environments of countless labs, etc, must be balanced
out with something nurturing and about being alive, or the other will take its
toll.
The
second thing is to remember that while the doctors perhaps had met this
disease before in some form, they've never met it in you---that's a whole other
equation. Who's to say it has to go exactly in a direction or in their
time frame. I went from being told that I had 6 months before needing a
transplant, (and the likely hood of my getting a liver by that time was very
slim) to an additional 6 months, to two years, to who knows...It's been 5
now and I'm still in that same 4th stage boat, but feeling pretty darn
good.
This
is not to say that I don't have an occasional fear spiral, or down time---I do,
it's natural...I have some fatigue, a bit of itching, particularly if I eat
something that everyone would have to say is in the "without merit--but
fun" food group...But we just can't know and neither can the docs, how it
all will turn out for us---They're there to help us, give us some true
guidance, if they're truly knowledgeable and compassionate, but our care / our
lives are up to us to steer.
Today
I felt a bit down due to life circumstances, mostly NOT having to do with PBC, and
I knew I needed to contribute instead of wallow, (not that I don't enjoy a good
wallow, now and then!)---So, I write this to you as a small way to offer
perspective (to those that may find it useful)---and
to those that are further down the path, I say thank you for being so generous
with sharing your pioneering spirit with us. This site, as I'm
beginning to see, could be a terrific way to exchange encouragements
and valuable medical / diet, etc, information. Thanks!
Julia
Hello, my name is ms Julia , I stared with three son’s in 1996 I lost my oldest
son , Michael he was in Fort Hood Texas , this forever changed my life
,there isn't a day that goes bye that I don't think of him or call his name ,
then in 2004 I was dx with pbc , there is so much to learn about this pbc , I’m
coping with this , I say too myself every day I can live with this , I’m trying
to live without my son, I take one day at a time, that's all I can do , I still
have two wonderful son's , yet I live in fear that something well happened to
one of them ...... I do a lot praying on behave of my son's , sorry I didn't
mean to unload on you guys ......so dealing with pbc has been easy for me
......I’m not making light of this ....I just feel that I can live with this ,
a lot more then living without my son.... Please forgive me if I sound cold ...... You all have a good day ....
Good bye ms Julia
Cindy
I am a newbie in
The Digest has given me information to be able to go in July and discuss my
condition with factual information and take charge of my health issues.
It had also given me hope because everywhere else seems to promote doom and
gloom. The digest is real people who are living and living long and full
lives with the disease and/or with tx. Knowing
that, I can better face each day with this disease.
I have my good and bad, up and down days, but I refuse to let this disease rob
me of a time of my life that I truly was looking forward to. So I take
each day at a time (good or bad) and thank the Lord for each of them.
Please feel free to contact me at any time.
Cindy 50 dx 4/04 PBC/AIH Stage 1
Amy
Hello fellow PBCers,
I'm
Amy, an American "ex-pat" living in
All
the best, Amy
Yvonne
Greetings fellow PBCers: My name is Yvonne, I'm 62 and was dx'd with PBC
- stage 1 in March 04 (positive AMA (ANA was
neg) and a liver biopsy. The only symptom I have is dry eyes
which was dxd via a tear test during a routine eye exam.
My primary residence is in a suburb of
My case was typical with routine elevated liver enzymes (done as part of a
wellness check), positive GGT (suggesting liver vs bone disease) & finally
a referral to GI specialist who finally did an AMA test &
"suggested" that the liver biopsy be done to stage the disease. My
When I got the news from the Dr I was in shock & uninformed. Even
though I am a nurse, PBC is not a well known disease. But I found the PBC
site and read the postings religiously. Most of the PBCers who posted
their experiences were a major comfort to me and I began to have a sense that I
wasn't going to die from PBC in the next couple of years. In fact, I am
now finally relaxed about my disease, however, I am taking the medicine,
avoiding alcohol & trying to eat healthy. So to all of you who
offered your advice & comfort & restored my sanity, I give you MY
BIGGEST THANK YOUs.
Since I come from a large extended family & am the only one to be dxd with
PBC, I had the responsibility & task to inform all 5 of our children and my
sister & 2 brothers and about a zillion cousins (10 aunts & uncles
& they all had children). Most of the women in our family live into their
80s & 90s with no sign of the disease. The men have died of heart disease
& also no signs of PBC. Informing each one of my family was one of the
hardest things I have had to do because they immediately think that I have a
terminal illness. It's a lot for them to absorb so to help in this
process, I wrote up an 'Everything You Ever Wanted to Know" document to
hand out to family. This has helped them tremendously as they can mull
over the info whenever they are READY to handle more information.
Thank you for being such an important part of my life,
Yvonne (currently in Gig Harbor, WA)
Name Unknown
I've enjoyed the stories so much that folks have sent in ... so I just had to
add mine to the mix. I'm 56 years, diagnosed with PBC in January of 2003
after at least 10 doctors and 5 years of in and out of offices, multiple tests
and biopsies. Unfortunately by the time of the diagnosis there was no
mistaking it ... I was in stage 4 cirrhosis (diagnosed by Dr. Kowdley at UW).
I now leave by the ocean in
My main symptom has been fatigue. Before I knew I had PBC I quit work in
1999 because I couldn't get there on time and couldn't stay all day ever.
If I'd been properly diagnosed I could have gotten disability. I am now
on social security disability. I've also had the itching and continue to
have the bone aches and pains. I also have pain in the right quadrant
fairly regularly now. My gastro told me last time I have some small
varices in my esophagus as well.
I try to live every day to the fullest when I can. My husband and I
travel overseas and domestically as much as we can. One thing I find
ironic in my life is that my father had an incurable disease (PSP), I have an
incurable disease (PBC) and my daughter was just diagnosed with an incurable
disease (MS). Life is not always "fair".
Linda F.
Hi to all and welcome to all new members. My name is Linda F.and I am fifty two
years young. I have five sons, two daughters and three granddaughters. I was
diagnosed stage 4 in August of 93. I live in
Linda from the Funny Farm
Nellie W.
My name is Nellie W. and I live in
Thanks for being there for all of us. Nellie
Mary Anne
Hello to all our PBCers
My name is Mary Anne and I am from
Barbara
Hello all--here's a short bio. I grew up in the
I am a quasi librarian at a public library. Music, especially
early music, prolific reading, gardening, hiking and making quilts are some of
my passions. I'm married and have two daughters, 35 and 38, and three
grandsons, all under the age of 3. I'm 65 this month and actually diagnosed my
own PBC in the late '80's after having had elevated liver enzymes since the
early '80's. I was more formally diagnosed in '95 and have been taking Urso250
since then. I haven't had a biopsy and don't know my stage but have no symptoms
and feel well. My only sibling, a sister who's 50, has had PBC for the last two
years. This digest has been more invaluable for me than I can say. There was
almost nothing of much worth, that I could find,
written about PBC before I found it. Thank you all who do the nitty-gritty work
of keeping it together and to all who contribute postings.
Barbara - in
Janet
Hi my name is Janet I just turned 42 and I was diagnosed in the summer of
2002. I am stage 2 and dealing with not only the FATIGNESS but joint pain in my
wrists, osteoarthritis in both knees and back problems (not related to PBC).
I am currently living in
Connie P.
Age 49. I have just been told that I
also Pbc on june1 my tests came back positive. Every thing is high liver
tests & AMA. My TSH T4 is also high on my thyroid .I have
been taking levoxyl for 3 years 75 mg for that TOTAL IRON BINDING high. I go
back to the dr on July 2.He said he thought I was in the first stage and might
not do a liver biopsy till late fall. I don't know why he would wait that long.
I know now that this is what has been going on for years now. And I am still been put off again. I don't
know what to do. I have all of the signs and pain.
I have fine out more from this site than from my on dr.I don't think I should
wait till fall. Guess I will fine out when I go Thanks, Connie
Terry M.
I am Teresa M. 47 years old and live in
I know
that we have free NHS treatment in
Teresa
PBC stage 1
Lisa
Hi, I
am 39 yrs old and married 17 years to my high school sweetheart. I have a
15 yr old son and 12 yr old daughter. I was diagnosed in October stage
1-2. Went for a regular checkup and my cholesterol was
400 and my liver enzymes were extremely elevated. I am on Urso and my
last blood work showed no real improvement. I have read many times on
here that it could take years to regulate the counts, yet my doctor is already
suggesting changing my meds and seeking another opinion. Has this
happened to anyone? I suffered with extreme itching until he put me on
Zoloft. Certain anti-depressants have been known to stop itching and I
rarely itch at all now. I also have terrible muscle and joint pain which
I have been dealing with for over 5 years now. Sometimes it’s so bad I
can't even pull up my own pants. My philosophy is to enjoy every day
because life is not a dress rehearsal. I am thankful that I finally have
a diagnosis and hope that it progresses as slowly as the doctors all tell me it
will. Thanks to all who share their stories they are encouraging and
helpful.
Cindy
I'm Cindy. I will be 49 in
August. I live in
Marie
Hi! My
name is Marie and at present I
live in San Diego in fact we had a small earthquake about an hour ago, I was dx
in march of 2003, 3 months after my husband died. Have lived in
Do
have a lot of the problems every-one else has with pbc
like thyroid problems and gerd but try to keep busy and keep
in touch with my kids.
Please
lets try to say only nice things to each other and try to find out all we can
about pbc
Hugs
Marie San Diego
Sandra S.
Hello, fellow PBCers,
My name is Sandra. I live in the
San Francisco Bay Area. I learned I have PBC three months ago after three long
months of tests and procedures to find the cause of my itching and high
cholesterol (437).
I found the PBCers before I was officially diagnosed. I kept
a list of all the blood work my doctors ordered and searched the
internet for the purpose of each one. Most pointed to PBC. When I
got my AMA test results and was prescribed ursodiol,I
asked my PCP if I had PBC. He sort of stammered and said I
needed to see the hepatologist.
I was scared when my doctors were searching for an answer and I didn't know
what was wrong with me. After I knew what I had, I was able to start
learning about what I was dealing with and find ways to cope. For me, the
more I learn the better I feel about being able to manage PBC and work with my
doctors. I hopeto learn enough that someday I will be able to read Dr.
Gershwin's papers and REALLY understand what they say.
My husband of 21 years has been wonderfully supportive during all of this,
learning along with me, selling PBC awareness pins to the folks he works with
and even giving blood and saliva samples along with me for Dr. Gershwin's
research. We have one son who just graduated from high school last
Saturday and will
be going off to college in a few months.
I work full time in information technology for a large tele-communications
company where I maintain electronic document repositories and am web mistress
for one of our internal web sites. At first, I was afraid that I might
have to consider changing jobs but I don't see that happening now. Well,
at least not because of PBC -- outsourcing my job off shore is another matter...
When I'm not working on computers, I enjoy reading,
gardening, cooking, growing orchids and making jewelry.
Sandra
Newark, CA, 46, dx 3/04, stage 1/2
Joan M.
Hi my name is Joan M, 57 yrs
old. Diagnosis in 1988 with stage 2-3. I started
on Actigal in 1989 and then changed to Urso when it first came out. I am
also type 1 diabetic on Insulin Pump ( and love
it) I was diagnosed with diabetes in 1990. I also have a younger
sister with diabetes. I have arthritis. I have
been married thirty-three years and have one son, Mark, who just
graduated from college and now living on his own. I found the PBC site
several years ago and so glad I did. This group is a wonderful
group. It has helped me deal with this disease.
I
worked full time for my local police department as a secretary and also do
matron work on the side (take care of female prisoners)
I try and keep busy, I also crochet and knit to keep my hands
busy.
Joan
M, Mass
Michelle
I'm 44 years old, married with an 18 year daughter who just graduated as
valedictorian for her class and identical 10 year old daughters that are the
light of my life. I have been in the mortgage business for 22 years and
just recently went from 50+ hours a week management job to 32 hours
non-management. The change has helped me out a ton with the
fatigue. It was thru this digest that I found the strength to even
consider the change. I was diagnosed in 2001 and at that time stage
1-2. I have had no itching and thank god. When I was pregnant with
my twins I had about 3 months of pure hell just literally digging my skin
off. Now I wonder if it was the PBC? I
will be attending the conference in
Thanks again to everyone, you help me everyday!
Marilyn D.
I'm Marilyn D. and was diagnosed
with PBC in '93. I'm approximately in stage two, and I'm 58. I
taught both secondary and elementary school for many years and managed some
property with my husband on top of all that. We have just started our own
home based business as he has wanted to back away from the corporate stress.
I'm married to my original spouse and we will soon have our 38th
anniversary. We raised a great son who works for a pharmaceutical
company. He's a bachelor, 33. I warned him we may go back to
arranged marriage if he doesn't get with the program. He has helped me quite
a bit with some information re: lower cost medications for persons who do not
have insurance, etc. I hope those PBCers realize there are special
programs which will assist them in getting their medications for less. I
have lots of interests: traveling, walking, gardening, reading,
socializing with friends and buzzing around with my husband in an old
Corvette. He's a major motorhead.
I too,
struggle with fatigue and aches, etc. This first appeared as uveitis (eye
inflamation--resulting in surgery) when I was just in my twenties and
shortly after our son was born. It took the medical world twenty years to
nail the label of PBC. I'm active in working with Dr. Gershwin and others
who are researching this disease. I will do whatever it takes as long as there
is not too much risk. I care about each of you and appreciate all the
volunteers who have given their talent and time.
Debby
Greetings, small but mighty PBCers! I have enjoyed reading all the bios,
so here's a little about ME! I'm Debby, age 53. I live in CT, with
my husband and four (4) dachshunds. I have one son and 2 step-sons all out
doing their own thing: art school, Air Force and first
job respectively. I'm a "retired" pharmacist, side-lined by
PBC and Celiac disease. (Those afternoon naps just weren't getting me any
Brownie points at work! ) I was diagnosed 2/02 and
found this wonderful site while
cruising the 'net for information. It took me awhile but I feel that I've put
together the care plan that works for me with acupuncture, and meditation
along with the host of drugs and vitamins we all endure. I like to read
mysteries in the summer and crochet in the winter. My husband and I ride
motorcycles on the weekend. Every year we have a garden with tomatoes and
cucumbers. Our black raspberries are just starting to ripen and we look forward
to freezing some for a mid-winter cobbler! Those CT winters can be pretty
rough, so it's nice to have something to warm us up.
Thanks to everyone for making this such an informative and supportive place to
share suggestions and ideas. Especially those who work tirelessly behind the
scenes to put this all together and send it out each and every day! Peace.
Debby
Olive
Hello pbcers,
Will tell you a few things about me.
I will be 80 yrs old in a few days. My only daughter is giving me my first
birthday party. I am very excited about it. I live alone in a Senior citizens
retirement center. Besides my daughter, I have one son, and a step-son. My
daughter is 54 and
looks 38. My son will soon be 62.... I lost my husband 12 yrs ago.. I was diagnosed in 1982 as having chronic active
hepatitus. Not realizing that I needed a hepatologist I continued to go
to my family Dr. In 1998 I changed to another dr. and he diag. the pbc.. I took actigall for a
while then urso 250. Haven’t taken any meds for 2 yrs now as
I got to the point of getting sick with every kind of med. I would take.
I am not one to take something that makes me sicker than before. PBC is now
considered a one of my minor problems as I have
many problems that are not related to pbc. I have never had itching or other
side affects the PBCers have. I do have fatigue. And no
energy at all. My hep says my labs are doing ok.
I have 4 sisters and 1 brother and I am the only one with any liver problems. I
was borne and raised near
in 1941. I have been here since.
Mamie
HI, My name is Mamie and I live in the
Thanks, Mamie
Richard & wife Evelyn
Hello, again.
Just a note to the gentleman who wanted to know if there were
other men with PBC. My husband, Richard, has PBC since '98. He has
progressed
quite rapidly to stage 4{or at least I think it is the stage he is in}. From
all I have read from the posts on this site. Thanks to all who make this site
what it is for us who are just learning what this PBC is all about. Our
daughters were the one that found this site and got me started on it. I am new
to computers and the internet so this has been a learning experience in more
ways than one. Thanks for all the bits of knowledge you have shared with us and
keep up the good works and kind words. They really help! Richard has started
reading the Digest with me and I hope it is helping him understand a little
more about what is going on in his body.
A little bit of bio on Richard. He will be 70 in Sept. .
At the limit for tx according to what his Dr. told him.
We live in the small southeastern
heavens that was clear, then they sent him to the University of Iowa Hospitals
and Clinics to see a blood specialist. They couldn't find out the problem so
sent him to the liver Doctor. Dr. Voight is the one that said he had PBC
after a series of blood tests and testing the pressure in his liver. He has
since been dx as diabetic. He is on 15 units of insulin and two pills a day. He
also has atrial Fibulation and arthritis. He is one of the lucky ones as he
does not have the itching.
He does have the diarrhea most days. We are taking it one day at a time. He is
having a hard time accepting the fact he can't do the things he
has always done, but don't we all? The fatigue is starting to be a problem on
some days worse than others.
God bless and take care and keep on caring for each other as you have been. It
is wonderful to find such a group of caring people.