PBCers Sharing
Regional Meeting & Other Event Experiences
2004
Linda
Corder
(
First, wanted to say what a great job you and the others did in organizing the San Antonio TX PBC meeting. (Sorry, can't remember all their names right now). Your communications before and during the 3 days was outstanding. I applaud you all.
I didn't really know what to expect!!!
I really enjoyed meeting all 50 people. I took pictures of most of them. Will forward them to you in a couple of weeks. Going on Vacation next week and my film is not finished in that roll.
The folks that were there, were just really nice people. They all made you feel like you've known them forever. That is what made attending so special for me. Making new friends and being able to share with someone that "really understands" what you are going thru. My husband also had a great time. He was glad he went with me.
I also learned that I was on the wrong medication----Actigall. That I should be on Urso 250. It just so happened that I had an appointment with my gastro today and showed her what I had learned. She wrote me another prescription; I left her with all the material that I had gotten from Karl.
The speakers were very informative and interesting. I learned some new things and re-learned some old things!!
Thanks again for the fine job you all did for us in
Linda Corder,
Whisel
(
Experiencing the joy, humor, vitality and affection shared among PBCers encouraged me to continue celebrating the human condition in whatever shape or form it takes. I am grateful to have been with so many smiling faces, sparkling eyes, firm handshakes and warm hugs. Whatever unique lifepaths or diversification of issues that exist among us, what mattered most is that this condition/disease/disorder brought us together as "sisters and brothers" in a type of "family" reunion. Thank you for this opportunity.
Buck Brown
(
Whisel very eloquently sums up my thoughts as well on the Texas Regional Meeting. I would only add that in addition to the personal joy of meeting others who struggle to manage the symptoms of PBC, I always stand in awe of the courage of those who have undergone a transplant and are so willing to share their personal experiences. Thank you - you are an inspiration to the rest of us.
Thanks for organizing a great meeting - I thought the speakers were first rate and our PBCer's panel were candid, open and very helpful describing the full range of this amazing condition we have from Lonnie at Stage -1 to Joan with 2 Tx's.
The most poignant and yet absolutely true observation was that made by Terri Noble - without PBC we probably wouldn't have the opportunity to be a member of this great group and to know such a courageous and inspiring group of friends.
I agree Terri - and you are so right.
Thanks again Linie to you and your band of Merry Angels for a such a great meeting.
Best,
Buck Brown,
Mary Anne Simpson
(
While driving home from the TX PBC meeting, I reflected on my experience.
First, I took valuable information to help me fight this cumbersome disease, I have surrendered that I must take better care of my body or it will not take care of me. I learned we need additional Fat soluble vitamin supplements than ever suspected. Dr. Lawitz stated the need for 50,000 U of Vitamin D daily! He suggested getting the fat soluble vitamin (A,D,E, K) lab levels checked for deficiencies. I learned all these brown spots I have on my skin are related to the PBC due to melanin mal-absorption. Did you know that fatigue is a presenting symptom in 65% of PBC'ers and itching is at 55%?
I learned that Soy can help reduce joint swelling easing joint pain. Edema and swelling are causes of joint pain. So it makes sense if you can reduce swelling with Soy, we should all be eating and drinking Soy products liberally. Did you know that Tofu is tasteless and inherits the taste of any food it is added into? Now if I can just get over that "spring back to life" texture, I will be able to tolerate this stuff. My mother adds it to her "Vegan Chili" for the protein. Did I mention that Axcan fed us a wonderful lunch with a great variety of wonderful food choices plus yummy desserts? The Axcan Reps were very informative about the company. They explained Urso therapy the fact that the normal dosage is 13-15mg/kg of body weight. They are a wonderful company and we are lucky they have chosen the Orphan drug market (drugs that support a small percentage of specifically diseased patients, such as PBC) as their niche.
Second, I learned that having a liver transplant might not kill me after
all. The debt and ability to pay for the liver transplant may kill my poor
husband who could die of a heart attack when he hears what this bill could
be! It left my head whirling thinking about how I was going to come up with
the amount of money it was going to take to transplant my liver. Dr.
Lawitz reported expenses close to $300,000 for
the first year following transplantation. It appears people with PBC need
two nest eggs; One for our home and retirement, and the other for the eventual
liver transplantation. Speaking with newly transplanted Teri Noble made me
realize what a challenge we have ahead of us to plan for our financial security
as our disease progresses. We all have to face the fact that transplantation
is expensive and this is why we all become uninsurable with a diagnosis of
PBC. In the
Thinking of body image and how I may feel as a post surgical transplant patient came to mind when Joan Dale flashed us a look at her incision. I found Joan's Mercedes incision appearing more like abstract body art than a lifesaving surgical technique. However it was large and very frightening to think it might be my body.
Transplant Nurse LeRhea Nichols spoke about our health insurance coverage. She suggested checking your policy lifetime maximum payment amounts. If the transplant expense is going to exceed the lifetime coverage a secondary insurance may be prudent. Check to see if your policy covers the price of the liver which is normally $20,000 - $30,000. Check your outpatient benefits and your deductible if you choose an out of network transplant center. She advised checking on co payments for prescription drugs, in and out of network deductible amounts. You may want a surgeon who is out of your network, what expense are you going to have to pay to achieve this desired care? She explained the procedure to enter the transplant center in anticipation of being listed as a recipient. Many in the group including the American Liver Foundation representative were astounded to find out a person could apply to the Transplant Center in San Antonio themselves, void of a referral from a primary care physician!
Third, I learned that this group of people really cares about one another! As I sat absorbing the conversations around me, Joan Dale said, "Mary Anne, pull up your chair so you are not separated from the rest of the group." What Joan didn't realize was I wasn't feeling alone at all, just absorbing the different conversations and people in the room.
I had three new PBC'ers sitting next to me by the
time the meeting started. A beautiful young woman from
When we went around the room introducing ourselves, one woman just couldn't speak. She was taken aback with the situation and started crying. At this point several in the room started crying with her. I reached over and touched Ronelle on the shoulder as she was one of them. We both wept together, like good friends who had known each other a lifetime. We wept for our poor friend who was only expressing what we all have felt, we wept for our loss of good health, for our lack of control over this unfair and inappropriately named disease, we wept for our loss of energy and feelings of helplessness with a disease that has no cure, we wept because we don't want to leave our children and husbands with ESLD. The room was filled with emotion, love and support. What a wonderful moment it was for me to realize I wasn't alone with these feelings. For a rare instant in my life, I felt safe, loved and accepted. Thank You Executive Committee for the great meeting, and the warm and fuzzy feelings.
Mary Anne Simpson,
2004 Meeting in Niagara Falls, NY
Carol
Roberts
PBC Update Event – July 15, 2004 The Days Inn in Niagara Falls, NY was the site of a PBC update for patients with Primary Biliary Cirrhosis and their families hosted by the Western New York PBC Support Group with assistance from the Western New York Chapter of the American Liver Foundation and Axcan Pharma the makers of URSO 250. The event began the evening before with a social gathering for those arriving early. The hotel provided us with a hospitality room to use to get to know each other (while eating an amazing selection of snacks and dessert). For some it was their first “face to face” meeting of another person sharing this illness – for others it was a chance to catch up on the lives of some very special friends. There were 28 attendees traveling from Michigan, Vermont, Canada, Pennsylvania and all over New York State. We were disappointed that our Texas attendee – Linie Moore from the PBCers Organization was unable to attend due to an injury.
We were fortunate to have two wonderful doctors to share their presentations and answer our questions. David A. Sass, MD - Assistant Professor of Medicine University of Pittsburgh School of Medicine gave two presentations. “I’ve been diagnosed with PBC, what does that mean?” & “Now that I have PBC, what treatment do I need?”. He obtained his medical degree from the University of Cape Town, South Africa in 1992. From there he went to the Albert Einstein Medical Center in Philadelphia, PA and then to the University of Pittsburgh. After obtaining a certificate in clinical research he was awarded a fellowship grant from the AASLD to study the “Genetic Basis for Primary Biliary Cirrhosis”. He is certified as a Diplomate in Internal Medicine and Gastroenterology and UNOS certified in Transplant Hepatology. Dr. Sass also spent time with the family members who attended to answer any private questions that they had.
Our other doctor was Thomas Shaw-Stiffel, MDCM, MMM – Medical Director of Liver Transplantation at the Center for Liver diseases at the UPMC and Associate Professor of Medicine at the University of Pittsburgh School of Medicine. Of course many of us knew him from his time spent in Rochester, NY as Chief of Medicine at Park Ridge Health System and Medical Director of Liver Transplantation and director of Hepatology at Strong Memorial Hospital where he was involved with living donor transplants. His topic for the day was “If I need a new liver, what can I expect?” Dr Shaw-Stiffel sat with the PBC patients after lunch while Dr. Sass spoke with the family members and listened while we introduced ourselves and answered some of our questions.
Mary Bell from the Rochester Toastmasters group spoke to us on coping with life after being diagnosed with a chronic illness. She and her husband both have Chrons’ disease. She told us how important family and support groups are in coping and encouraged all to use the help that is out there. The event was a huge success – everyone left with handouts and goodies from the PBCers Organization, the ALF and Axcan Pharma as well as renewed hope for the future and many new friends. I would like to thank my friends Joan and Carolynne for their help and support both prior to and during the meeting - my sister Sue for her help with setting up, registration and videotaping- also George, Maryanne & Sandra for working on the 50/50 raffle and auctions. We were able to raise $364 for the PBC Fund the Cure.
The Western New York PBC Support group holds informal meetings – usually in the spring and fall – if you would like to join us or need to talk to someone regarding PBC please contact Carol Roberts at (585)225-7845.
