LiverHope
Volume 4, Issue 9 September 2002
LiverHope
Volume 4, Issue 9 September 2002
Are you newly diagnosed or do you want more information about Hepatitis
C?
-
Attend
LiverHope too –
September
15th, 2002
In This Issue
Calendar.............................................................................................. 1
Minnesota
Hepfest 2002.................................................................. 1
Joyful News........................................................................................ 2
Interferon
Therapy Can Prolong Life Expectancy Among Chronic Hepatitis C Patients 2
A Note from a
Fellow Hepper.......................................................... 3
4th Annual
Sharing Life Walk/Run................................................ 3
Painkillers
and the Liver................................................................... 4
Age at
Infection Influences Outcome of Hepatitis C................... 4
Weight Loss
Improves Liver Abnormalities in Patients With Chronic Hepatitis C 5
United Way
Campaign 2002............................................................ 5
This year’s Minnesota hepfest was a wonderful week of caring and sharing with people who were or who all became friends. We had a wonderful turnout this year with a total of 98 people from the following 13 states: Florida 2, Iowa 1, Illinois 1, Louisiana 2, Michigan 3, Minnesota – Twin City locals 64, Minnesota - out-state 10, Mississippi 1, New Jersey 2, Oregon 1, South Dakota 2, Tennessee 1, Texas 1, Wisconsin 6, plus one from Victoria, British Columbia, Canada. Those attending included 54 heppers, 27 hepper helpers and 17 well behaved children and teenagers.
This was one of the best Hepfests we have ever had and it wouldn't have been possible without my wonderful husband Jerry. He is always the chief cook and bottle washer during the hepfest and refuses most help offered to him. He tells people to just relax and be on vacation! Thankfully not everyone listens to him <grin>.
Andy Robarge from Roche was kind enough to donate a catered meal from Famous Dave’s barbeque on Saturday night (the biggest night of the fest). Preston Wilson from Schering supplied us with literature, pens, and notepads. Molly from ALF gave us T-shirts, golf towels, and cups to give away.
We had a wonderful hairdresser (mine) on Saturday who did hair in exchange for a donation to LiverHope. Thanks Jennifer! A big special thank you goes out to the following people who labored in my kitchen for us: Gloria from Michigan made yummy stuffed peppers, Leo from Texas made his fabulous chalupas and his wife Barbara sent her scrumptious homemade pralines with him again this year! Pete “Da Yooper” from Wisconsin made his fiery hot chili -- OUCH! Vern from right here in Minnesota made deep-fried turkey and chicken; they were wonderful! MJ from Michigan made her lasagna for us again this year and it was a big hit! Lori from Mississippi, thank you for putting out breakfast every night before you went to bed!
And more thanks to everyone else for their help in preparing meals, putting away a never-ending supply of food, washing dishes, donating food and money for food, and for everything else that needs to be done when you have 98 friends over for a week; not to mention the never-ending loads of towels that needed washing constantly.
I want especially to say a big thank you to Helen for her fabulous baked goods and to Bruce for all his trips to the airport. It could not have been done without them. They are truly our best and dearest friends.
On Saturday night we held a silent auction to benefit LiverHope. It was very successful with a total of $836.50 raised! This will be put to good use and will benefit patients with hep c. Heppers and hepper helpers donated all of the items auctioned. A great big thanks to Gloria and Debbie from Michigan for setting up the auction; I know it was a lot of work and you made it look so easy!
On Sunday afternoon we held a memorial service for Pat Davis, better known as Apache Pat or Patchie. Michael from South Dakota led us in prayer and then we each took a turn to talk about how special she was to every one of us who was there. There will never be another Patchie. I handed out a flower bulb for each of us to plant in our gardens in her memory. The card read:
Plant a flower in memory
of Patricia Libby Davis Born: November 2, 1939 Died: November 1, 2001. Apache
Pat loved flowers so please plant this one in the spring and when it blooms you
will have a lovely flower in memory of Patchie.
On the reverse side I put a nice picture of her. Many tears fell. The minute we finished the service, Patchie’s daughter Teri called to say hi and how much she wished her Mom could have been here. I think Patchie was here and knew when to tell Teri to call. We love you Teri and we sure miss your Mom!
There were five liver transplant recipients here this year, three
men, and two women. The earliest transplant was 6 ½ years ago and the most recent was just 7 months ago. The recipients all seem to be in good health and are in great spirits. What a blessing for these people and for us to still have them with us!
For those of you who have never been to a Hepfest, my advice is to attend one. It makes such a difference to be able to sit and visit with others who are going through what you are. Even though each of us has a unique story to tell, there is always someone who can "relate". Long-lasting friendships are formed and sometimes a new romance starts. Many tears are shed when it's time to go home.
It’s so quiet here in my house now and I'm already lonesome for my friends who were here for so many days. I thank each and every one of you who came and made this year one of the best ever!!! I hope to see everyone again at next year’s hepfest. It will be held August 6 – 10, 2003.
Hugs to all,
Pat Buchanan
Wayne Mattingley (a LiverHope member) had planned to attend the hepfest this year with his wife but an unexpected phone call quickly changed their plans. He was admitted to the hospital at the University of Minnesota instead. He went in on Friday, August 9th, and received the gift of a new liver the following morning. He did so well and recovered so quickly, that he was moved out of the ICU on Monday and was able to walk in the halls that day! He was discharged on Friday, August 16, and says it’s been years since he has felt so well. What a wonderful outcome. We hope that his recovery will continue to progress smoothly and we expect to see them at the hepfest next year!
Interferon Therapy Can Prolong Life
Expectancy Among Chronic Hepatitis C Patients
Life expectancy can be increased in chronic hepatitis C patients undergoing interferon therapy due to its preventative effect in liver-related deaths reports a study in the latest issue of Gastroenterology.
The effects of interferon therapy in chronic hepatitis C patients on survival are unclear. However, a Japanese study has now attempted to cast some light on this subject.
Researchers from several universities and medical schools in Japan analyzed survival rates among 2889 chronic hepatitis C
patients using a retrospective cohort study.
All subjects in the study had histologically proven hepatitis C, with 2430 patients receiving interferon therapy, and 459 patients remaining untreated.
For intervention, the median dose and duration of interferon administration were 480 million units and 137 days, respectively. Medical records or direct questionnaires were used to confirm survival status.
The effect of interferon therapy on survival was assessed by standardized mortality ratio (SMR) based on published mortality among the Japanese general population and by risk ratio, calculated by proportional hazards regression.
A total of 30 of 459 untreated patients, 7 of 817 virologic sustained responders, and 49 of 1613 non-responders died in 5.4-years follow-up.
Of these 86 deaths, 58 (67%) were due to liver diseases (39 to hepatocellular carcinoma).
Compared with the general population, overall mortality was high among untreated patients (SMR: 1.9; CI: 1.3-2.8) but not among interferon-treated patients (SMR: 0.9; CI: 0.7-1.1).
More specifically, in the case of liver related death, the likelihood of dying was reduced, both among interferon-treated patients and sustained responders, when compared to the untreated group.
The researchers therefore conclude that interferon therapy improved survival of hepatitis C patients by preventing liver-related deaths.
Gastroenterology
2002; 123(2): 483-491
30 July 2002
Please don't put your life on hold before, during, or after treatment.
Do what you can. Enjoy what you can. Kick butt when you can. After an unsuccessful 6 months first try at treatment and another 18 months with most all the sides except the most lethal, I think I know what I am talking about. And for those of you who don't know about the 12-step program for AA (Alcoholics Anonymous), look into it and use it. Those same steps apply to Hep C and Life…period. And for those of you who are familiar with AA, refresh your memories.
I'm swimming again, doing arts and crafts, visiting - at home and away (as you know I went to the 2002 Hepfest), entertaining friends here for a few days at a time, doing some photography (not too well), attempting some gourmet cooking (liking food again), preparing to go back to college (and I'm 58 years young), learning (brain fog lifting) a new graphics program (Paint Shop Pro), gardening, riding my bike, boating, fishing, shrimping (was able to do those last three within limits on treatment), sex life returning (yippee) learning how to make love all over again, going on picnics, playing in the rain, and walking in the sunshine (with sunscreen of course).
Sure I get tired but COME ON, life is there, live it. Hep C virus or not, if there's one thing I’ve learned from this journey on the Hep Sea, it’s to ride the waves when they are up. That’s not to say I don't still have some near drowning episodes (some residual side effects, cardiac problems and emotional ups and downs), but they are fewer and fewer. And if the time comes when I am again scuba diving below the waves on a limited air supply, so be it. I tried, fairly successfully, to enjoy life on treatment (used humor a lot) and am enjoying the H E double L out of life even more now. I really don't care what my results are going to be, I am going to live my life to the fullest extent I am able to do NOW and in the future.
I met many, many heppers at the hepfest and it was an attitude shared by nearly everyone (especially a little lady who goes by the name of Helen): to do the very thing I am talking about. So keep smiles on your faces and do as I say, KICK BUTT and LIVE LIFE as much as you possibly can.
An ever hopeful hepper,
Joyce
(Editor’s note: Joyce
is six months post treatment and waiting for her PCR results. She lives in
Florida.)
4th Annual Sharing Life
Walk/Run
Saturday, September 21, 2002
8:30 AM at
Lake Phalen in St. Paul
This event is held each year to remember and honor the life of Laura L. Neumann, whose life was extended by fourteen years through the gift of a kidney and liver transplant. Kris Neumann Goldade, Laura's sister, started the Sharing Life Foundation to support research to find a cure for liver disease (Hep C), educate the public about the need for organ donation, and financially support families and individuals going through the transplantation process.
The event starts with a walk/run and includes a kids' race, kids' games, a picnic, live music, and fantastic door prizes! The grand prize is a weekend stay at the Downtown Radisson. Last year we had 300 participants. Please join us!If you are interested in participating, contact Kris Neumann Goldade at 651-698-5409 or visit their website at www.sharinglife.org
Which type of painkiller is safer for my liver -
Tylenol (acetaminophen), or Advil (NSAID-nonsteroidal anti-inflammatory)?
Acetaminophen (APAP or Tylenol) is a medication used to control pain (known as an analgesic) and fever (known as an antipyretic). It does this without producing the stomach discomfort often experienced with aspirin and other nonsteroidal anti-inflammatories (NSAIDs). This capability has caused acetaminophen to become a very popular alternative to NSAIDs. In small doses (i.e. less than four grams per day, or eight pills taken over a twenty-four hour period of time) acetaminophen is quite safe for the liver. (Note: each acetaminophen tablet or pill typically contains 500mg of acetaminophen). In fact, acetaminophen is the recommended medication for relieving minor aches, pains and headaches from any cause in individuals with liver disease.
However, when taken in excessive quantities or when combined with alcohol, acetaminophen may cause death due to liver failure. In fact, an overdose of acetaminophen is one of the most common causes of liver failure, as well as the most common cause of drug-induced liver disease in the United States. And, after acetaminophen became readily available in 1960 as an over-the- counter medication, it became one of the most popular instrumentality's for attempting suicide.
For liver injury to occur, acetaminophen must generally be consumed in a quantity exceeding fifteen grams within a short period of time, such as in a single dose. Although uncommon, an ingestion of between seven to ten grams at one time may also cause liver damage. The consumption of alcohol in conjunction with acetaminophen significantly increases the likelihood that an individual will incur severe liver damage. Therefore, individuals who consume alcohol on a regular basis should probably limit acetaminophen intake to a maximum of one to two grams per day (i.e. two to four pills within a twenty-four hour period). Still, the best advice for individuals with liver disease is to totally abstain from alcohol.
Individuals should take special note that acetaminophen is also an active ingredient in more than two hundred other medications, including Nyquil and Anacin 3. So, it is essential to carefully read the labels of all over-the-counter medications carefully. Other commonly used medications such as omeprazole (Prilosec), phenytoin (Dilantin), and isoniazid (INH) may increase the risk of liver injury caused by acetaminophen. It is always in the liver patient's best interests to consult with his or her hepatologist prior to taking any medication.
Acetylsalicylic acid (Aspirin) and other NSAIDs are drugs which are widely used for their anti-inflammatory and analgesic effects. They also have the potential to cause drug-induced liver disease. In fact, many NSAIDs have been withdrawn from the market due to their harmful effects on the liver (known as hepatotoxicity). All NSAIDs have the potential to cause liver injury. However, some NSAIDs are more hepatotoxic than others. The NSAIDs, which are presently on the market, yet are frequently associated with liver injury are: aspirin (ASA), diclofenac (Voltaren), and sulindac (Clinoril). Therefore, individuals with liver disease should avoid using these NSAIDs. Older women seem to be particularly susceptible to the hepatotoxicity of NSAIDs, and are best advised to avoid NSAIDs altogether. Individuals who have developed complications of cirrhosis, (known as decompensated cirrhosis), such as ascites (accumulation of fluid in the abdomen) or bleeding esophageal varices (enlarged blood vessels in the esophagus), are at increased risk or kidney injury due to NSAIDs. Since this may lead to both liver and kidney failure, known as hepatorenal syndrome, individuals with advanced liver disease are best advised to totally avoid all NSAIDs.
In conclusion, acetaminophen taken in moderate dosages is generally the safer choice for the relief of minor aches and pains occurring in individuals with any type of hepatitis or liver disease.
Excerpted
from "Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease"
©
Copyright Melissa Palmer, MD 1999
Age at Infection Influences Outcome of Hepatitis C
NEW YORK (Reuters Health) Jul 19 - In patients with transfusion-associated hepatitis C, age at infection influences the likelihood of progression to cirrhosis, according to Italian researchers.
Dr. Dario Conte of Ospidale Maggiore, Milan, and colleagues note that during the 1980s, before screening of donors was introduced, about 10% of patients receiving transfusions in Italy developed hepatitis C.
In order to assess risks factors for progression to cirrhosis, the researchers eventually identified 268 patients with hepatitis C who recalled a single and precisely dated transfusion event and showed no other cause of chronic liver disease. All underwent ultrasound-guided liver biopsy.
As reported in the June 15th issue of Blood, 54 of these patients (20.1%) were found to have cirrhosis, at a mean of 18.4 years after blood transfusion. Multivariate analysis
showed that this was independently associated with serum levels of alanine aminotransferase and with age at biopsy, duration of follow-up and age at infection.
The investigators calculate that over a period of 30 years, patients aged 21 to 30 years at the time of hepatitis C virus infection are 4.51 times more likely to develop cirrhosis than those aged 20 years or less. In those older than 31 years at infection, the corresponding risk ratio is 12.29.
The researchers recommend that "an aggressive therapeutic approach should be adopted in patients infected by hepatitis C virus at an older age to prevent progression to end-stage liver disease."
Blood
2002;99:4588-4591
Weight Loss Improves Liver Abnormalities in Patients With Chronic Hepatitis C
NEW YORK (Reuters Health) Jul 24 - Steatosis and elevated liver enzyme levels are a common finding in patients with chronic hepatitis C. New study findings indicate that both of these abnormalities may be improved by weight loss.
Apart from avoiding alcohol use, there have been few reports of lifestyle changes that can improve hepatitis C liver disease. However, in some patients with chronic hepatitis C, the pathogenesis of steatosis appears similar to that seen in patients with non-alcoholic fatty liver disease. Namely, the steatosis is related to the presence of visceral adiposity and elevated serum insulin levels.
Based on this, Dr. E. E. Powell, from Princess Alexandra Hospital in Brisbane, Australia, and colleagues decided to investigate if weight loss would improve the steatosis and abnormal enzyme levels seen in patients with chronic hepatitis C. The researchers' findings are published in the July issue of Gut.
The study involved 19 patients with steatosis and chronic hepatitis C who participated in a 3-month weight reduction program. Liver histology was determined in 10 subjects before and after the weight loss intervention.
The subjects experienced a mean weight loss of 5.9 kg and mean waist circumference reduction of 9.0 cm. In most patients, serum alanine aminotransferase levels fell progressively as weight decreased. Furthermore, a significant reduction in fasting insulin levels was also observed.
Nine patients experienced a reduction in steatosis and the extent of improvement was directly related to the amount of weight loss, the authors note. Moreover, the improvement was independent of the viral genotype present. Five of these nine patients also demonstrated a reduction in fibrosis.
"These results demonstrate for the first time that weight reduction in patients with chronic HCV may reduce hepatic steatosis," the investigators point out. "We believe that weight reduction may provide an important new adjunct treatment strategy for patients with chronic hepatitis C."
When the 2002 United Way Campaign begins at your place of employment, we would appreciate it if you would consider designating LiverHope as one of your choices for your United Way contribution this year. We are in their database as an eligible recipient because of our non-profit status.
Thank you so much for considering us.
Co-Facilitators
Email:
info@liverhope.com
Fax: (763)
566-0589
Website:
www.liverhope.com
Helen: (952) 933-0932 – helen@liverhope.com
Pat: (763) 566-3839 – pat@liverhope.com
[1]Born
in Sydney, Australia, Dr. Smith graduated from the University of Sydney in
1969. He completed his medical
residency at Royal Prince Alfred Hospital in Sydney. Continuing his post-graduate education, he completed his
fellowship in gastroenterology at the same facility and followed this with a
year working as a clinical research fellow.
He did additional postgraduate work in liver disease in Brisbane,
Australia and in Copenhagen, Denmark.
This work resulted in a research doctoral thesis.
In 1979, Dr. Smith
accepted a position as a clinical instructor in liver disease at the University
of Southern California. Then he
received an appointment at Stanford University in the Division of Infectious
Diseases where he conducted research in hepatitis.
He was a member of the
medical school faculty at the University of Minnesota before he joined
Digestive Healthcare (which became Minnesota Gastroenterology, P.A.) in
1987. He is currently a Clinical
Associate Professor at the University of Minnesota and Medical Director of the
Minnesota Clinical Research Center.
With his extensive
medical research background, Dr. Smith has written numerous articles about
liver disease which have been published in medical journals both here and
abroad.
When his schedule permits, Dr. Smith enjoys biking, running and spending time with his family. He and his wife have three children.