PBCers MEETING THE
CHALLENGE
Conference Report from the PBCers Organization President, Linie Moore BIG THANKS to
our conference organizing committee. It has been an honor working
with them, and I truly feel they out did themselves this year. Thanks
to: (PBCerLinda@aol.com) Linda Lynch - Co-chair (IMRanch@aol.com) Sandra Tropple THANKS to Axcan Pharma for sponsoring our
conference and to Patrick Colin and Thomas Draime for answering all of our
questions. It's comforting to have a company such as Axcan Pharma
standing behind our organization. URSO Many
THANKS to our digest members, conference attendees, doctors, sponsors,
Adelphi School of Nursing and the American Liver Foundation for their
generosity in donating not only their time and energy, but the craft items,
Wow, what a wonderful conference! I think our fifth PBC Conference
was the best one we’ve had. Not only was it a great learning experience,
but everyone appeared to really have a good time. It was such fun
renewing old PBCer friendships and making new ones. We had a large
number of newly diagnosed PBCers attend this year. I hope they left
(2wingers@cox-internet.com) Judy Faust
(clroberts11@hotmail.com) Carol Roberts
(ehurtig@twinvalley.net) Edie Hurtig
(FVertrees@aol.com) Anne Vertrees
(Gaynell@aol.com) Gay Walker
(hdb39@hotmail.com) Buck Brown
(janice_hurst@hotmail.com) Janice Hurst
(jjha@azalea.net) Jean & John Haynes
(PBCRhea@aol.com) Rhea Meshekow
(watson@euronet.nl) Diana Watson
250 and Axcan's continued PBC research give us hope for the future.
books, auction gifts and monetary donations. Without your continued
support we would not be able to achieve our organization's goals; offering
help and education to our fellow PBCers and the general public. Thanks to
all for working so hard to make our conference fundraising event a huge
success.
This was when those who were attending the conference for the first time
saw what an upbeat and friendly group we are. Not only do we learn
from the medical speakers, but we learn
Conference Notes: Charlene comments --
As always I learned lot of "new stuff" and reinforced knowledge
I already knew I am so impressed by the caliber of speakers the
organizers get for the PBC conferences, that I always send a
program to my internist so she can see that it isn't just a bunch of women getting together to
"play" . The friendships made are just as important as
the education gained. I
do like having the conference in difference places as I like seeing new territory. Not only is the conference good for us,
but it is good for our spouses as they have a chance to express their
thoughts, fears, and concerns with others with the same feelings. …and from Janice Hurst of
Living with chronic illness presents
varied challenges for patients, their caregivers, families, support conditions? How
can we empower ourselves to utilize all the resources available to assist
us? When one first receives a medical diagnosis of a chronic
illness, often he/she exhibits a whole gamut of emotions. These may include fear, denial, anger,
guilt, depression and frustration.
Not knowing what the future ramifications of one’s illness might be
is quite frightening. A patient may
feel isolated and that no one else can possibly understand what he/she is
experiencing. It is important for
the individual to express these emotions.
An understanding medical professional, such as a psychologist or
psychiatrist can help the patient sort out these emotions in a safe and
private setting. Often times, a
support group, spiritual leader or trusted friend or family member can help
the patient by being, if nothing else, a good listener. Adapting to a new way of life and coping with one’s
chronic illness(es) is a different process for each person. To gain some insight, I contacted several
PBCers who have generously offered their thoughts on how they cope. Questions and candid responses may be
helpful to others in their journeys with chronic illness. How did you feel when you first received your
diagnosis of PBC? Those
responding stated that they were frightened, devastated, angry and shocked
when informed that they had a life-threatening and life-altering
illness. They also were appreciative
that they finally received a certain diagnosis. Many felt that they had been given a
death sentence, most likely due to the fact that they did not have current
information or their caregivers did not provide adequate education in that
regard. Some stated that their
primary care doctors are uneducated about autoimmune liver diseases and
this was frustrating for patients whose medical needs and concerns are
constantly changing. In what ways
has your life changed since your diagnosis and acceptance of your disease? Our respondents mentioned that they
take better care of themselves and that they are more attuned to their
bodies. They have learned to slow
down and have shifted their priorities in how they live each day. Living life to the fullest and appreciating
the small pleasures of life have become more meaningful. Some find humor, relaxation, having fun,
or just spoiling themselves to be helpful.
Finding joy in each day is important. How do YOU cope?
Many mentioned that they have empowered themselves by researching
their disease and educating themselves and those close to them. Living life
in the shadow of serious illness affects the patient and all who know and
care for them. Many have involved
themselves in the PBCers Organization, the American Liver Foundation and in
fundraising for a cure for PBC. Having a supportive family, medical team,
friends, counselors, spiritual life and a positive outlook are all
extremely important. How has your
illness affected your relationships with family, friends, or co-workers? Do they treat you differently? Surprisingly, many said that family members, friends and co-workers
do not acknowledge their illness.
Some have been hesitant to share with others. Because PBC does not always have overt
symptoms, it is difficult for others to understand the ways the disease has
limited patients in how they cope in their daily lives. However, several mentioned that by
educating others and sharing their honest feelings, family, friends and
others are more willing to support them and understand what they’re
experiencing. Some mentioned that
without support, they could not cope as well as they have. Some PBCers have
been estranged from friends, family, and co-workers, which is very hurtful.
However, to not be afraid to be open and genuine has a lot to do with how
others view us. Some suggested that
they are still in denial that they do have a serious chronic illness, which
adds to the challenges one faces. What changes
have you made, physically, emotionally, spiritually, etc., since your
diagnosis? Each person responded
that she has made positive changes in diet, exercise regimens and has a
renewed purpose to take better care of her body. Taking time to rest, to enjoy the small
pleasures of life, to creating a spiritual center and accepting new
limitations is a process all mentioned happens in its own time. Many seek professional help from the
mental health community. Spiritual
guidance, support from family, friends and medical professionals does make
a difference in how one copes. Being
open and honest with all with whom we trust can be especially affirming.
What advice would you give to others who have
recently been diagnosed or are having trouble coping with their new life
after diagnosis? Most
recommended seeking out a local support group or an online group as very
helpful in coping with their diagnosis. Sharing fears, thoughts and
feelings with others who are struggling in ways that are similar can be
very helpful. It is very important
to feel comfortable with your medical team as well. If one does not feel comfortable with a
medical professional or their care, perhaps seeking another opinion may be
appropriate. Ask support persons to
accompany you to appointments. Educating oneself and those around you is
essential. Life does go on after
diagnosis, maybe differently, but with support a person can have a quality
and enriching life. By
Anne Vertrees
Questions & Answers by
Dr. Andrew Mason Associate
Professor of Medicine, Division of 2. Is there anything that can be done to help this
pain? 3. Why does
the itching of PBC seem to come and go? Do doctors know what causes the
itching? There are factors in bile that are not
adequately removed in PBC patients that cause the itching. Although Urso is
of great help, when the therapy is started, the itching can get worse as the
Urso starts to increase the bile flow. So we advise patients to stick with
Urso therapy as it usually is of some benefit.
1. What causes the Upper right quadrant
pain that so many of us have? We think that it may be due to
an enlargement of the liver.
Occasionally some get relief from lying on their left side.
4. Fatigue: Could you explain why it
is so bad in PBC? What causes it?
All liver disease can have severe fatigue as the main complaint.
This probably occurs because the liver is the main manufacture and
degradation organ for the body. So if this is deficient, the main result is
lack of energy.
5. Is there anything that can be
done to help? As fatigue is the
main presenting factor for depression, we sometimes use anti-depressants to
boost energy.
6. My doctor, who is not
hepatologist, admits he knows very little about PBC. Well most of us Hepatologists don't
understand the disease very well.
7. After symptoms begin to surface in
the individual, how many years of good health might one expect to have, or
is this totally based on the individual?
It used to be thought that PBC was a progressive disease that
would lead to liver transplant in 9 to 15 years. Now we know that many patients
with mild disease have no progression to cirrhosis or a need for liver
transplant.
8. Should alcohol consumption be
stopped entirely in persons with PBC?