LiverHope
Volume 3, Issue 07 July 2001
LiverHope
Volume 3, Issue 07 July 2001
Are you newly diagnosed or
do you want more information about Hepatitis C?
- Attend LiverHope too -
July 15th, 2001
In This Issue
4th Annual Minnesota Hepfest 2001
Study Finds Troubling Trends In Hepatitis
C Screening, Diagnosis and Referral
4th Annual Minnesota Hepfest 2001
This August we will not hold our
regularly scheduled LiverHope meetings. Instead, we encourage everyone to
attend the Minnesota Hepfest that will be held August 1-5. It really is a week
long support group. It’s a lot of work but well worth our effort.
If you’re
coming from out of town, you’ll fly into the Minneapolis/St. Paul airport.
Plenty of people will have cars so we will arrange pickups from the airport.
There is no need to rent a car unless you want to do some sightseeing on your
own. Last year people carpooled for rides to and from the hotels and for
sightseeing trips (don't miss the Mall of America).
I have a large
house and yard with a swimming pool and hot tub so swimsuits are a must!
Actually, you may swim in any attire if you are too shy to wear a swimsuit.
There also is a public park across the street if the crowd gets too large, but
I think we will be fine. We had 110 here last year with plenty of room to
spare.
We will take
turns cooking meals and will pass a hat to cover the grocery bill. However,
contributions are not mandatory. I don't want anyone to feel that they can't
afford to attend. There
is plenty of yard space for tents if you prefer not to stay in a hotel. You are welcome to camp here but you need to let me know if that is your plan. Also, there’s room on the driveway to park a motor home. A list of hotels closest to my home are listed at the end of this note. They all are located in the same area in Brooklyn Center and are less than a mile from my house. I live only a couple of blocks from the border of Brooklyn Center. I have listed national toll free numbers for some of them along with the local numbers.
Feel
free to share this info with any other support groups.
If you have any questions, please
email me at pat@liverhope.com or give me a call at (763) 566-3839.
I'm sending warm thoughts and
prayers to everyone in their continuing fight against Hepatitis.
Hugs,
Pat
Buchanan
Comfort Inn
763 560-7464 or 1 800 228-5150
Super 8
763 566-9810 or 1 800 800-8000
Country Inn
and Suites
763 561-0900 or 1 800 456-4000
Hilton
763 566-8000
Baymont Inn & Suites
763 561-8400
Americinn
763 566-7500 or 1 800 634-3444
Holiday Inn
763 566-4140
Motel 6
763
560-9789
From WI: Follow I-94 West to Minnesota and watch for the I-694 exit. Follow I-694 west until you cross the Mississippi River. Take an immediate right onto 252 north. Follow 252 to 73rd Ave and turn left. From 73rd, take the first right, which is Aldrich Ave. Follow Aldrich until you come to the T in the road, which is Meadowwood Drive. Turn left onto Meadowwood. I'm the 4th house on the left side of the street. My address is 901 Meadowwood Drive, Brooklyn Park, MN 55444.
From the South: Take I-35W North to I-94 West to 252 North. Follow 252 to 73rd Ave and turn left. From 73rd, take the first right, which is Aldrich Ave. Follow Aldrich until you come to the T in the road, which is Meadowwood Drive. Turn left onto Meadowwood. I'm the 4th house on the left side of the street. My address is 901 Meadowwood Drive, Brooklyn Park, MN 55444.
Call for directions from anywhere: (763) 566-3839
It's real hugs from other persons with
hepatitis.
It's love and caring and sharing of thoughts and feelings.
It's meeting a very good friend face to face for perhaps the very first time.
Its renewing ongoing friendships with those
who know exactly how you feel like no one else ever could.
It's hepper helpers finding out they aren't alone because other helpers
(spouses) have the same feelings they do.
It's good friends, good times, good food, and good music.
It's wonderful.
Study Finds Troubling Trends In Hepatitis C Screening, Diagnosis
and Referral
ANN ARBOR, MI -- May 22, 2001 --
People who might be infected with the potentially fatal hepatitis C virus are
not getting tested early or often enough, possibly because neither they nor
their primary doctors are raising the issue, a new University of Michigan (U-M)
Health System study finds. And even if they do test positive for the virus,
they may not always get referred for specialty care.
The study's results suggest an
urgent need for better awareness among both physicians and the public about the
risk factors for hepatitis C. The authors say better mechanisms may be needed
to help busy doctors identify those at risk and ensure they get tested while
there is still time to refer them for treatment - treatment that may help them
fight the infection and stave off liver failure.
The new study finds that among a
sample of the 2,348 hepatitis C screening tests ordered by primary care
physicians, only a quarter of the tests were ordered because the doctor
identified the patient as having a potential risk factor, such as intravenous
drug use or a blood transfusion before 1992. Another 65 percent had the test
because of prior liver problems or because routine blood tests showed elevated
liver enzymes. Ten percent of patients requested it.
Of all those tested, 10 percent
turned out to be infected and about half were referred to a specialist for
follow-up. Meanwhile, almost half of the 57 patients who tested positive and
went on to have a liver biopsy turned out to have
significant liver scarring, either cirrhosis or fibrosis, suggesting a
longstanding infection.
The results were presented May 21
at the Digestive Disease Week meeting in Atlanta, Georgia, by U-M Medical
School gastroenterology professor Anna Lok, M.D., fellow Thomas Shehab, M.D.,
and visiting fellow Mauricio Orrego, M.D.
"Primary care doctors are the
gatekeepers of the health care system, and it's crucial that they catch this
infection early by asking about risk factors, ordering tests, and referring
those who test positive for evaluation and treatment," says Dr. Lok.
"And since primary care is a two-way street, patients need to know whether
they might be at risk, and volunteer that information to their doctors so they
can get help and find out how they can keep from spreading the disease."
Adds Dr. Shehab, "General
physicians are being expected to screen for more and more diseases, and our
results show we need to help them do that in a way that's both efficient and
effective." The study is one of the first of its kind, based on actual
medical records from patients at several primary care sites. Drs. Lok and
Shehab have also performed surveys of primary care physicians, and found that
many reported they thought they did a good job of assessing patients for their
hepatitis C risk and referring them for treatment. The new study did not
examine why a higher percentage of patients weren't tested based on risk
factors, or what reasons - such as a patient's age or other health problems -
might have kept an infected patient from getting a referral. The study also
only reflects patients who had a hepatitis C test, and not those who weren't
asked about or didn't offer risk factor information.
"Ideally, early diagnosis can
be made if doctors ask about hepatitis C risk factors and patients answer
honestly," says Dr. Lok. "We shouldn't wait until patients have
symptoms, or until the infection has progressed, as treatment is often more
effective if it's begun earlier."
"In addition, there are
important potential benefits to the public at large of early diagnosis,"
Dr. Shehab adds. "These include the fact that hepatitis C patients may
change behaviors and therefore reduce the risk of transmission to others, and
the possibility that they may modify practices such as alcohol consumption that
may alter the disease's progression."
Eighty percent of people infected
with hepatitis C, either in the initial acute phase or the long-term chronic
phase, have no signs or symptoms. Only blood tests for antibodies against the
virus, or for the virus' genetic
material can show for sure that they're infected. Infections can go undetected
for years or even decades before symptoms begin, even while the liver is slowly
destroyed. In the current study, the percentage of patients whose biopsy showed
significant liver scarring was high - at least 10 percent of all those who
tested positive for the virus.
As many as 3.9
million people in the United States may have the hepatitis C virus, and an
estimated 2.7 million of them have chronic infections, putting them at risk for
liver failure.
Both
professional societies and federal agencies have developed guidelines to help
doctors find and treat infections. But public health authorities know that many
infections aren't spotted. There is no vaccine against the virus, and even
advanced treatments are only moderately successful in slowing the pace of the
chronic disease's progression toward either liver transplant or death.
The stigma
attached to some risk factors may play a part. Intravenous drug use, risky
sexual practices, cocaine use and tattoos from dirty needles are all common
means of transmission. Dr. Lok notes that patients need to volunteer
information about these behaviors to their doctors - even if it has been
decades since the last time. And doctors need to act on that information.
Meanwhile,
other behaviors that don't carry a stigma may still put people at risk of
infection: occupational exposures in health care workers, long-term dialysis,
or having received a blood transfusion or organ transplant before 1992, when
surveillance of the blood supply improved.
Once a person
tests positive for hepatitis C, further tests and biopsies to determine the
subtype of the virus, whether the infection is active or dormant, and the
extent of accumulated impact on the liver, are often needed to help guide
treatment. This often leads to specialized treatment by those with advanced
training in liver disease. For example, Dr. Lok is leading a major national
study of a combination therapy that uses a new form of interferon and an
antiviral drug. The question of why
only 57 percent of hepatitis C-infected patients in the study were referred to
specialists puzzles Dr. Lok and her colleagues. They plan to look at the
question prospectively, to see if race, gender, medical, insurance or other
factors are at work. They also hope to explore ways to add screening questions
about hepatitis C risk factors to the questionnaires that patients in primary
care clinics are often
asked to fill out when they arrive, or to find ways to use technology to make
that process more efficient.
SOURCE: University of Michigan Health System, via DG
Dispatch
On Nov. 18, 1995, Itzhak Perlman,
the violinist, came on stage to give a concert at Avery Fisher Hall at Lincoln
Center in New York City. If you have ever been to a Perlman concert, you know
that getting on stage is no small achievement for him. He was stricken with polio as a child, and
has braces on both legs and walks with the aid of crutches. To see him walk
across the stage one step at a time, painfully and slowly, is an awesome sight.
He walks painfully, yet majestically, until he reaches his chair. Then he sits
down, slowly, puts his crutches on the floor, undoes the clasps on his legs,
tucks one foot back and extends the other foot forward. Then he bends down and
picks up the violin, puts it under his chin, nods to the conductor and proceeds
to play.
By now, the audience is used to
this ritual. They sit quietly while he makes his way across the stage to his
chair. They remain reverently silent while he undoes the clasps on his legs.
They wait until he is ready to play.
But this time, something went
wrong. Just as he finished the first few bars, one of the strings on his violin
broke. You could hear it snap - it went off like gunfire across the room. There
was no mistaking what that sound meant. There was no mistaking what he had to
do. People who were there that night thought to themselves: "We figured
that he would have to get up, put on the clasps again, pick up the crutches and
limp his way off stage - to either find another violin or else find another
string for this one." But he didn't. Instead, he waited a moment, closed
his eyes and then signaled the conductor to begin again. The orchestra began,
and he played from where he had left off. And he played with such passion and
such power and such purity, as they had never heard before.
Of course, anyone knows that it is
impossible to play a symphonic work with just three strings. I know that, and
you know that, but that night Itzhak Perlman refused to know that. You could
see him modulating, changing, and recomposing the piece in his head. At one
point, it sounded like he was de-tuning the strings to get new sounds from them
that they had never made before.
When he finished, there was an
awesome silence in the room. And then people rose and cheered. There was an
extraordinary outburst of applause from every corner of the auditorium. We were
all on our feet, screaming and cheering, doing everything we could to show how
much we appreciated what he had done.
He smiled, wiped the sweat from his brow, raised his bow to quiet us,
and then he said, not boastfully, but in a quiet, pensive, reverent tone...
"You know, sometimes it is the
artist's task to find out how much music you can still make with what you have
left." What a powerful line that is. It has stayed in my mind ever since I
heard it. And who knows? Perhaps that is the definition of life - not just for
artists but also for all of us. Here is a man who has prepared all his life to
make music on a violin of four strings, who, all of a sudden, in the middle of
a concert, finds himself with only three strings; so he makes music with three
strings, and the music he made that night with just three strings was more
beautiful, more sacred, more memorable, than any that he had ever made before,
when he had four strings.
So, perhaps our task in this shaky,
fast-changing, bewildering world in which we live is to make music, at first
with all that we have, and then, when that is no longer possible, to make music
with what we have left.
Scientists call it TNV—The Next Virus. It’s the one that could be percolating in blood banks this moment. But Cerus Corp. may have created the first defense shield for the world’s blood supply. Its Helinx compounds bind with DNA and RNA, inactivating all viruses and bacteria, including HIV and HCV (hepatitis C). (Healthy blood components are unaffected.) The filter is not a cure for people already infected with HIV or HCV-- the viruses replicate too quickly and lodge themselves in bodily tissues—but it makes transfusions safer and could increase blood supplies once blood banks trust the technology. Cerus hopes to gain FDA approval late next year.
SOURCE:
Newsweek, June 25, 2001
The Hepatitis C Quilt will be on display at the Minnesota Hepfest. If you wish, you can add your own square to the Hepatitis C Quilt or create one for a loved one.
You can bring it to Pat's Hepfest and it will be returned to Marie, along with the quilt, for later inclusion. The quilt squares should measure 12 inches by 12 inches. They should be made of either red or yellow material. You can decorate the square by painting or embroidering it. Or, you can incorporate your own unique, creative flair.
If you can’t come up with an idea for your square, just outline your hand on the material, add your name, date you were diagnosed, where you are from, and any other information that you desire. If you wish, you may send your completed square directly to:
Marie Stern
14119 Via Corsini
San Diego, CA 92128
Marie adds the new squares each time the quilt is returned to her. You can view the quilt at http://home.flash.net/~stern/quilt/
Have fun creating your Hep C quilt square!
LiverHope Support Group
Helen
Clark & Pat Buchanan
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] Ulrich Beyendorff has been
the Clinic Supervisor at the Alternative Medicine Clinic, Department of
Medicine, Hennepin County Medical Center since 1992. He is a Co-Principal Investigator of a NIH Office of Alternative
Medicine sponsored research project on the investigation of Chinese Herbal
Medicine in the treatment of Hepatitis C. Uli and Dr. Jeffrey Albrecht are
performing the first human trials of an herbal formula thought to lessen the
severity of Hepatitis C symptoms. Uli
received his Chinese Medicine training in San Francisco and China. Uli is a Licensed Acupuncturist, State of
Minnesota and has received both a Diplomate in Acupuncture and a Diplomate in
Chinese Herbology from the National Commission for the Certification of
Acupuncturists, Washington, DC. His
focus is on the treatment of fatigue, OB-GYN, and Gastroenterology including
liver diseases.