Winter 2008 - Coram CVS/specialty infusion services

Celebrate Life
The Quarterly for Home Parenteral and Enteral Nutrition (HPEN) Consumers
Seven Steps to Success as a PN Consumer
The Second Opinion
Access Your Options (or Alternatives)
Fighting PNS — Parenteral Nutrition Stress
Celebrations and Dining Out
The Oley Foundation, Coram and Apria
Winter 2008
Winter 2008 Issue
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3 A Letter From John J. Arlotta
Coram CEO John J. Arlotta addresses Coram’s recent merger with Apria
Healthcare and the numerous benefits the merger will provide parenteral
and enteral nutrition patients.
4 Seven Steps to Success as a PN Consumer
Don Young, a PN consumer for more than 30 years, offers key lifestyle tips to
other consumers at the 2007 Oley Consumer Conference.
5 The Second Opinion
Access Your Options (or Alternatives)
No two consumers have the exact same response to treatment. Coram
Partner Linda Gravenstein suggests ways to educate yourself as much as
possible about your needs.
6 Fighting PNS — Parenteral Nutrition Stress
Are you busy, busy, busy? Whether you are a caretaker, a care partner or a
PN consumer, you may be under a great deal of stress and not even know it.
Follow these tips to learn how to deal with your stress and eventually find a
silver lining in almost any situation.
8 Home Parenteral and Enteral Nutrition Support
Educational Teleconference Call Series
In an effort to educate and empower home nutrition consumers, Coram is
pleased to present the 2008 schedule for its Educational Teleconference Call
Series for HPEN consumers.
10 Celebrations and Dining Out
Celebrate Life
The Quarterly Newsletter for Home Parenteral
and Enteral (HPEN) Consumers
Winter 2008
Celebrate Life Staff
Carol Ireton-Jones, Editor-in-Chief
Carlota Bentley, Managing Editor
Brad Jones, Senior Editor
Karen Hamilton, Clinical Editor
Patrick Standish, Design and Layout
Contributing Writers
Linda Gravenstein
Don Young
Celebrate Life is published quarterly and provided as a
free service to parenteral and enteral consumers. Opinions expressed by contributing authors and sources
are not necessarily those of the publisher. Information contained in this newsletter is for educational
purposes only and is not intended as a substitute for
medical advice.
Do not use this information to diagnose or treat a
health problem or disease without consulting a
qualified physician. Please consult your physician
before starting any course of supplementation or
treatment, particularly if you are currently under
medical care. Never disregard medical advice or
delay in seeking it because of something you have
read in this newsletter.
© 2008 Coram Inc. All rights reserved. No part of
this publication may be distributed, reprinted or
photocopied without prior written permission of
copyright owner. All service marks, trademarks and
trade names presented or referred to in this newsletter are the property of their respective owners.
We welcome your comments, stories and suggestions. All correspondence should be sent to:
Brad Jones, Senior Editor
Celebrate Life
28550 Cabot Drive, Suite 200
Novi, MI 48377
Tel: 248.324.6333
Email: [email protected]
Get-togethers can be difficult if you are a PN patient — especially at mealtime or when dining out. Are you tired or frustrated from trying to explain
why you are not ordering a full meal at a restaurant? The Oley Foundation
has come up with a great idea for dining out at restaurants.
11 The Oley Foundation, Coram and Apria
The Oley Foundation is a national, independent non-profit organization that
provides information, resources and psycho-social support to consumers
of home parenteral and enteral nutrition (HPEN). Read about Coram’s and
Apria’s support of the Oley Foundation over the past 25 years.
COR09007-0108
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Celebrate Life • The Quarterly Newsletter for Home Parenteral and Enteral Nutrition (HPEN) Consumers
A Letter From John J. Arlotta
As CEO of Coram, Inc., I am proud to announce that we have recently
completed a merger with Apria Healthcare. In doing so, we have greatly
enhanced our level of integrated home care services, and have become the
largest specialty infusion service provider in the nation. This means that as a
Coram or Apria home parenteral or enteral nutrition (HPEN) consumer, you’ll
have access to new resources and expanded support services along with a
seamless continuation of your current care plan.
We now have greater resources with which to serve you. Benefits include a more extensive
network of branch offices, and a combined total of 84 infusion sites to support you when you travel.
Of course, you will continue to have access to your local nutrition support teams, and the consumer
resources and expert clinical support you’ve come to expect and trust. From personalized care and
delivery of your nutritional support therapy, to the availability of a broad range of new products
and services, our goal is to be the provider of choice for all of your nutritional needs by giving you
a level of service, responsiveness and care that is second to none. Coram’s merger with Apria also
adds the benefits of inhalation therapy pharmacies and a broad range of respiratory services such as
home oxygen therapy, CPAP/BiPAP for treating sleep disordered breathing, home-delivered diabetic
supplies and home medical equipment.
If you have any questions, please contact your local nutrition support dietitian, or our consumer
resource line at 866.4HomePEN (866.446.6373). Thank you once again for the trust you place in us to
deliver the expert care you need to stay healthy and live your life to the fullest.
Sincerely,
John J. Arlotta
Chief Executive Officer
Coram, Inc.
An Apria Healthcare Company
Winter 2008 Issue
3
Seven Steps to Success as a PN Consumer
Don Young, a PN consumer for more than 30 years, spoke at the 2007 Oley Consumer Conference about his “Seven Steps to Success.” If you have additions to these seven steps, please send
them to [email protected]. We may include them in our next newsletter. Thank you
Don for always helping your fellow consumer!
1. Be Informed and Educated
• Use your resources, including your Coram clinicians and the Oley Foundation.
2.
Take Control
• Therapy is done with you, not to you.
• Learn about your care and your equipment so you can have more control in the process.
• If you live far away from your care provider, move closer; it is important.
3.
Cost of Supplements
• If you take supplements, shop around to find the best price.
• Search the internet, ask your friends. Ask your doctor before you take any supplements.
• Expensive doesn’t necessarily mean better.
4.
Lifestyle Changes
• Realize that you may not be able to do what others do.
• Learn to say “no” and do only what you can handle.
• Be selfish — think of yourself first.
5. Hospitals
• Try to stay out of the hospital; you are vulnerable there in lots of ways, including germs,
care of your catheter and more.
• Designate someone as the liaison between you and your doctor. You need someone who
is looking out for you when you are feeling bad.
• Keep track of your info on your computer or in a notebook; carry a printout with you to
the hospital. Don’t give up your originals.
• Use your Oley “Keep Me Safe” poster.
6. Home Care Companies
• Home care companies, including Coram, are the best thing since sliced bread (people
used to mix their PN treatments in their homes).
• Home care companies need consumers, and consumers need home care companies.
7.
Faith
• You need a source of strength.
• Do what you need to do to give yourself strength.
• Give back to those who have helped you.
This article represents the opinions of the author and are not necessarily the opinions of Coram, Inc.
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Celebrate Life • The Quarterly Newsletter for Home Parenteral and Enteral Nutrition (HPEN) Consumers
The Second Opinion
Access Your Options (or Alternatives)
by Linda Gravenstein, Coram Partner
After 26 years as a caregiver for a nutrition support consumer, I have been involved in many
scenarios that have been challenging and life changing. I have personally experienced
negative news, and I have listened to other families that have been the recipient of negative
news. Sometimes we think that we have run out of options — this can be a helpless feeling.
In these circumstances, resources such as your physicians, your home care clinicians and
support groups like the Oley Foundation* can make all the difference.
Every consumer I have met on HPEN is a wonderfully complex person. No two
consumers have exactly the same responses to treatments. This makes each
one of you unique and special. Given the fact that no medical professional has
all the answers, it may take a team with you as the captain to find the right
solution to your problem. You need to educate yourself as much as you can
about your needs. One way you can do this is to access the Oley Foundation,
a non-profit organization that serves as a clearinghouse of information for
HPEN consumers. This foundation holds an annual conference and invites
medical professionals from all over the world to share their knowledge. The
Oley Foundation also publishes a newsletter that is very informative. If you
find something in the newsletter that is of interest to you, bring it
to your physician. He or she may not be aware of new or specific
approaches to your therapy.
For example, just this year my daughter was given very
negative news that would have impacted her life greatly.
I remembered hearing a physician speak years ago at an
Oley Conference about the exact topic that was affecting
my daughter. I called Oley and got the number for the
center where the doctor practiced and was able to obtain
an appointment. The visit had a very positive effect on
my daughter’s condition.
If you are ever faced with negative circumstances, whether
it is bad news, a negative prognosis or just something
you don’t understand, please take the initiative and seek out
answers — even if it is a second opinion. Remember your condition is
complex, and centers of excellence for your condition may have more
answers. Contact your Coram clinician if you need help finding a center
of excellence near you.
*The Oley Foundation • www.oley.org • Toll-free 800.776.OLEY (6539)
Winter 2008 Issue
5
Fighting PNS — Parenteral Nutrition Stress
by Carol Ireton-Jones, PhD, RD, LD, CNSD
Stress is the condition that results when personal or environmental transactions lead an individual to
perceive a discrepancy — real or not — between the demands of a situation and the resources of the
person’s biological, psychological or social systems. In medical terms, stress is the disruption of homeostasis through physical or psychological stimuli.
Stress can be good and bad. Many people feel they do a great job when working under the stress of a
deadline. However, for others, waiting until the last minute to complete a project can cause worry and,
in some cases, physical symptoms.
What is your life like? Are you busy, busy, busy? Do people envy you for what you can get done? Are you
exhausted? Can you stop long enough to determine if you are exhausted?
Whether you are a caretaker, a care partner or a consumer, you may be under a great deal of stress and
not even know it. Stress can affect digestion, growth, sleep and energy storage and can be caused by
many things — an upcoming doctor appointment, a surgical procedure, a family event and more. It
could be as simple as the fear of a GI problem occurring while outside the home. Are you so worried
that you can’t relax? So relax. It’s easy, right? Not always. Here are some suggestions for dealing with the
stress of a potential GI problem that have been submitted to us by other consumers.
• Plan a short trip for your first outing.
• Choose a place you are familiar with. For example, pick a place where you know you won’t be
far away from a restroom for a long time. You may want to pack some supplies, such as an extra
change of clothes.
• Picture the whole trip in your mind. Envision yourself getting in the car, riding in the car and feeling
good. Now imagine yourself stopping at your location, enjoying yourself, then going home.
• It can be as uneventful as a 10-minute trip, but it can be your first success story. And guess what,
if you have an accident, who cares? Remember, former President George H. Bush threw up at
a state dinner — right in front of some of the world’s top dignitaries! Marie Osmond recently
fainted on live TV on “Dancing with the Stars.” They are human and so are you.
Hopefully, exercises such as these will alleviate your worries and symptoms of stress will fade. If, however,
you suffer from chronic stress, it may lead to other diagnoses. As a consumer, you may deal with physical
stress on a day-to-day basis. You may also be suffering from psychological stress, brought on by a case
of the “what ifs” in your life: “What if my catheter gets infected?”, “What if my delivery doesn’t come?”,
“What if my lab tests aren’t right?” Sometimes it seems like we try to conjure up scenarios to keep our
mind occupied! If you are suffering from “What if?” syndrome, try the following:
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• STOP! Start Thinking Of Positives — the positives in your life.
• If you are having a hard time identifying the positives in your life, make an effort to notice them. Sit
down with a notebook before bed and write down all the good things that happened that day.
Celebrate Life • The Quarterly Newsletter for Home Parenteral and Enteral Nutrition (HPEN) Consumers
This may be hard at first, but pretty soon you will be able to find a silver lining in almost everything.
For example, I knocked a bottle of syrup off the shelf in my pantry recently and the syrup spilled out
everywhere. I know it sounds like a small problem compared to the strenuous trials we face each day
in the HPEN world, but I really wanted to cry and have someone else clean it up. Instead, I decided to
find the positive in the situation. Did you know that syrup can flow almost everywhere? It was really
pretty amazing. I am not sure I could have planned to put syrup in the places where it went. Even six
months later, I still find syrup in the nooks. How about that for amazing syrup! Our Coram Partner, Linda
Gravenstein offers another example. She is a caregiver to her mother and her daughter, both of whom
have had serious medical issues. Recently, she started to fall when trying to do something, but she
caught herself with her laptop computer. The positive? She didn’t fall, because the laptop saved her.
Of course, the laptop broke into two pieces, but the hard drive is still intact and she can retrieve all the
information from it. Talk about viewing something positively!
Now, compared to the challenges of being on home parenteral or enteral nutrition (HPEN), these
stories are no big deal. Nevertheless, if you put the challenges of being a HPEN consumer first in your
life, it may be, as Dr. Lyn Howard has called it, “the elephant in the room.” Find the positive in everything. I know you can do it.
Winter 2008 Issue
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Home Parenteral and Enteral Nutrition Support
Educational Teleconference Call Series
In Invitation to the Consumer Community
Coram is a consumer-focused company that strives to educate and empower the consumers it serves. To that end,
Coram is pleased to present to you the 2008 Home Parenteral and Enteral Nutrition Support Educational Conference
Call Series.
The Educational Conference Call Series is a great way to share, listen and learn about topics that affect you as patients and
consumers. You never have to leave your home and there is no charge for participating. Coram’s goal is to provide you
with information and to give you an opportunity to interact with others with similar interests and concerns. To participate
in a conference call, simply follow these steps:
• Call 866.213.1962 approximately five minutes before the call is scheduled to begin
• When prompted, enter the seven-digit conference call access code 9917809
We look forward to having you!
Conference Call 2008 Calendar
All conference calls are held on Tuesday evenings at 7:00 EST, 6:00 CST, 5:00 MST and 4:00 PST. Arizona calls will be one hour earlier during
daylight savings time.
January 15, 2008
Speaker: Marcia Reints,
Clinical Reimbursement Specialist, Coram
Topic: Insurance Check Up
April 15, 2008
Speaker: Bob H. Saggi, MD
Topic: Intestinal Rehabilitation vs. Intestinal
Transplant — Which is Right for You?
February 19, 2008
Speakers: Nancy Kramer, RN and
Marcia Boatwright, RN, CRNI, Coram Infusion
Topic: Caring for Your Access Device Part II:
Maintaining Patency
May 20, 2008
Speakers: Robin Nagel, RD and
Linda Gravenstein, Coram Partner
Topic: Traveling — You Can Do It!
March 18, 2008
Hug Your Dietitian Month
Speakers: Karen Hamilton, MS, RD and
Carol Ireton-Jones, PhD, RD, Coram
Topic: Eating for Enjoyment — What to
Avoid and Tips to Maximize Your Social Life
June 2008 — No Call
Oley Conference in San Diego, June 28-30
July 2008 — No Call
Enjoy your summer!
August 19, 2008
Speaker: Megan Gravenstein,
Coram Consumer
Topic: School Daze! Kindergarten to College
September 16, 2008
Speaker: Mark DeLegge, MD,
Medical Director, Coram
Topic: What to Do When You Are Told You
Have No Options Left — Exploring Centers
of Excellence
October 21, 2008
Speaker: TBA
Topic: Transitioning to Independence on HPN
November 18, 2008
Speaker: Carol Smith, PhD, RN
KU Medical Center
Topic: Coping for the Holidays — We All
Need It!
December 2008 — No Call
Enjoy the holidays!
For more information, contact:
Linda Gravenstein, Coram Partner: Toll-free 866.4HomePEN (866.466.6373) • Cell 832.296.7188 • Email [email protected]
Carol Ireton-Jones, Director, Nutrition Services: Tel 972.394.9974 • Cell 972.786.2859 • Email [email protected]
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Celebrate Life • The Quarterly Newsletter for Home Parenteral and Enteral Nutrition (HPEN) Consumers
Tell us about yourself!
Coram places sponsorship advertisements in newsletters
and magazines such as the Oley Foundation newsletter,
LifelineLetter. These ads provide others with anecdotes
about our PN consumers as well as information about
Coram’s nutrition services. Many of you have your own
stories to tell — stories that we believe would make great
testimonials to Coram’s home care abilities and your
own love for life. That said, we are inviting you to write
about your experiences with Coram. You provide the
words, photos and anything else you think your friends
and fellow consumers would like to know about Coram
and life on PN. Our graphic artists may turn your ideas
and words into an ad for the Oley Foundation newsletter.
Send your stories to [email protected] or fax
them to 972.394.9774. The first approved submission
will be placed in the March/April 2008 edition of the
LifeLineLetter.
To the right is a sample ad that illustrates how Jerry Fickle
is living his life to the fullest!
We look forward to your stories!
REQUIREMENTS:
TEXT: Around 100 words describing how you live life to
the fullest while on home PN. It may seem like a lot, but it
won’t be once you get started.
PHOTO(S): We would love a photo or two. Please
submit multiple pictures so we can choose the best
one(s). We can also scan printed photos; all photos will
be returned.
CONTACT INFORMATION: You will be contacted by a
Coram representative to develop your story. You will
review and approve it before it is published. Please include
a daytime phone number with your submission.
Have Home PN.
Will travel.
Our consumers don’t have to stay put because
of their treatment. At least that’s what Jerry
Fickle believes. He has been on Home PN more
than 25 years. In that time he’s been on an
Alaskan cruise, to wherever Purdue University
plays in a bowl game, to Florida and on bus trips
with seniors groups. He plays golf and rides a
Jet Ski when he can find the time. Jerry doesn’t
see why he can’t do what he wants. And Coram
encourages him, working with him to make it all
possible. We got him started, and we will be there
for the long run.
Contact us toll-free at
866.4.HomePEN (866.446.6373)
or visit www.coramhc.com
Coram consumers.
Going places. Doing things. Living life.
Winter 2008 Issue
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Celebrations and Dining Out
Celebrations and holidays are a great time for visiting family and
friends, exchanging gifts and, of course, eating. Lots of eating. Goodies
are at our fingertips everywhere we go, and dinners are discarded in
favor of 10-course feasts fit for kings. This can prove difficult if you are
parenteral nutrition patient. You may find it awkward to sit down with
friends and family at mealtime, and at restaurants it can be frustrating
trying to explain to your waiter why you are not ordering a full meal.
At Coram, we encourage you to continue living your life as normally
as possible. Though you may not be able to eat, mealtime is still a
great opportunity to sit down and interact with people you care
about, and who care about you. Some of you may be able to eat in
moderation. If so, you must check with your doctor first so that it
does not interfere with your therapy.
It is very important to get your family, friends or care partner involved in your treatment as
well. They will be naturally curious about your condition and will be interested to learn about
your treatment. The more they understand it, the more they will realize nutrition therapy allows
you to lead an active, full and satisfying life. Chances are they will become one of your greatest
sources of support.
A Great Idea for Dining Out
Are you tired or frustrated from trying to explain why you are not ordering a full meal at a
restaurant? The Oley Foundation has come up with a great idea for dining out at restaurants.
Members and Regional Coordinators at Oley have developed Restaurant Cards — small printed
cards that can be carried inside your wallet or pocket book.
The front of the cards have the Oley logo and address, an illustration of a person infusing by tube
and IV, and the words “For people fed by tube or IV.” The back of the cards read: “I have a serious
digestive disorder which limits my ability to eat. Most of my nutrition is infused through a tube or IV
catheter. Please allow me to order a smaller portion, share a plate or order from the children’s menu.
Thank you for your consideration, Oley Foundation Member.” There is also a card for people who
cannot swallow. The Oley foundation will work with you to personalize a card for you. You can
call the Oley Foundation at 800.776.OLEY or order at www.oley.org/orderform.html
You do not have to be an Oley Foundation member to order or use these cards.
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Celebrate Life • The Quarterly Newsletter for Home Parenteral and Enteral Nutrition (HPEN) Consumers
The Oley Foundation, Coram and Apria
The Oley Foundation has had a longstanding relationship with Coram. Coram has been a supporter of the Oley Foundation for more than 25 years, or as long as the Oley Foundation has been around. In fact, it was a Coram consumer,
Clarence Oldenburg (Oley) who started the Oley Foundation with Dr. Lyn Howard. If you are not familiar with the Oley
Foundation, it is a national, independent non-profit organization that provides information, resources and psychosocial support to consumers of home parenteral and enteral nutrition (HPEN). You may have seen it referenced in this
newsletter and in past newsletters. Membership in the Oley Foundation offers many benefits and is free of charge for
people on HPEN.
Coram has been a Golden Donor level sponsor for many years and Apria was a donor to the Oley Foundation at the
Bronze Donor level in 2007. We pride ourselves on the support we bring to our consumers, and we also want to support
organizations such as the Oley Foundation who provide needed support and resources to HPEN consumers.
The Oley Foundation • www.oley.org • Toll-free 800.776.OLEY (6539)
Using the letters in the puzzle as clues, fill in the words from the list on the right.
caregiver
celebrate
change
clinician
consumer
Coram
Coram Partner
diet
dietitian
enteral
family
friends
home care
Home PN
infusion
lifestyle
nutrition
Oley
opinion
options
parenteral
resources
strength
support
therapy
treatment
winter
Winter 2008 Issue
11
Celebrate Life
A publication of Coram Inc.
1675 Broadway, Suite 900
Denver, Colorado 80202
A publication of Coram, Inc.