Ana & Isa Stenzel
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Transcript of Ana & Isa Stenzel
Living Well with Cystic Fibrosis
Anabel Stenzel, MS, CGCIsabel Stenzel Byrnes, MSW, MPH
Friends Health ConnectionWebinar
August 22, 2011
Everyone With Chronic Illness Has a Story
Parallels Between Chronic Illness Experiences
Most common chronic illnesses: diabetes, asthma, arthritis, lupus, heart/lung disease, transplant patients, some cancer patients
• Chronic health maintenance: medications, clinic visits, hospital stays
• Chronic loss and worry
• Coping with being different
• Future is unknown
• Childhood chronic illness poses challenges at each developmental stage
Born in 1972 to Immigrant Parents
Diagnosed with CF at Birth
• a multisystem disease• is highly variable• is lifelong • is no longer a childhood disease• is progressive• is high maintenance• impacts daily living• shortens lifespan• is now an infectious disease
Cystic Fibrosis is…
Welsh, Sci Am, 1995, 273, 52
Frequent Hospitalizations
Impact of CF on Families• Impact on marriage - financial stress, role strain, exhaustion• We tried to maintain a sense of normalcy • We needed extended family & community
support• We needed health insurance
and job security• We needed to learn how
to communicate
Impact of CF on Siblings• Siblings with CF- rivalry, symbiosis, comparison• Siblings without CF- jealousy, rebellion, compassion
and support• Healthy siblings may not want special treatment, extra
responsibilities or pity• Healthy sibs may appreciate education about CF and
how to explain it to their friends• May benefit from outside mentors or activities
What Helped Us Cope with CF• A passion and outlet outside of illness
• Attitude of Gratitude
• Discipline: satisfaction from effort with results
• Philosophy of life: struggle is part of the human condition
• Illness Community
• Childhood Self Expression
• Sense of Humor
Treatment Burden
3-4 hours per day
Following Doctor’s Orders is Difficult
• 20-50% of American CF patients do not follow their doctor’s treatment recommendation*
• Young people want to be normal• Acceptance of disease is critical for compliance
11 year old child’s quote: "Healthy people spend their entire
lives trying to be special; sick people spend their entire lives
trying to be normal"
*T.White, U.Minn, US; G.Latchford, U.Leeds, UK
Tips for Parents• Parents must be consistent, dependable, and
sensitive to children’s intentions and needs
• Treatments are non-negotiable, with punishment, rewards and contracts
• Treatments need to be a family habit
• It’s okay to hate CF
• Parent’s guilt may contribute to ‘giving in’
All contents (c) Copyright 2003 thebreathingroom.org. All Rights Reserved.
The Breathing Room: Artistic Expression for People with CF and their Caregivers
www.thebreathingroom.orgBathe Me
I want you to bathe me,cleanse me of this putridity within.As my body soaks in that whichis meant to remove the foul poison,I am drowning.The weight of the tubes,the pills, the needles, the aerosols pulls medown like an anchor in a deep sea,it controls who I am, my time, my life.I should be floating in a bubble bathof elegance, luxury, perfection.Instead, there are no bubbles, they all burst.It’s just me and this bath of disease.
I. Stenzel 1997
Pursuing Normal Lives Despite CF: College, Travel, Career
40% work full-time, 14% are on disability
Marriage and Parenting
40% of CF adults are married 240 pregnancies in 2008
www.cff.org
How Health Care Providers Helped Us Cope with CF
• Competent and knowledgeable about CF • Encouragement and validation• Are compassionate but not too compassionate:
CF does not make us victims• Respect patient autonomy and collaboration• Communication that builds trust: “I think, I
want, I feel, I need”• Being real with professional boundaries• Taught us to be our own advocates
Wrestling with the Angel : Coping with Declining Health
• Disability, financial stress, dependency • Having distractions and staying as active as possible• Permission to grieve our losses & express ourselves• Surrounding ourselves with support• Tapping into inner strength, determination and faith
Lung Transplantation: Waiting for New Lungs
• Donors matched by size and blood type• UNOS Wait list based on LAS• Average wait : ½ - 2 years• 14% of people waiting for lungs have CF• One donor can save 7 people
The Gift of Life: Ana 6/14/00 & 7/14/07; Isa 2/6/04
Ana waited 16 months/5months; Isa waited 2 weeks
During After
Surgery & Recovery
Life After Lung Transplantation…
Is miraculous!Is unimaginable!Is breath-taking!Is freedom!
Support organ donationwww.donatelife.net or www.DonateLifeCalifornia.org
Lung Transplantation : Our Generation’s “Cure”
Over 20,000 transplants occur in the USA each year
The Heroes of Transplantation: The Donor Families
Ana’s DonorThe Dorn Family
Of James Dorn, 29 years old, Eugene, OR
Isa’s DonorThe Cervantes FamilyOf Xavier Cervantes,
18 years old, Fresno, CA
Writing Helped Us Cope with Illness
• Creative outlet spurred by challengesThere is no greater agony than bearing an untold story inside you.- Maya Angelou
• Healing transformation through writing
What is healing but a shift in perspective?
- Mark Doty
• Benefits of family life review• Historical perspective• Serve as an ambassador to raise
awareness of CF
The Power of Two: A Twin Triumph Over Cystic Fibrosis
Our memoir was translated into
Japanese and released in Japan in Sept. 2009
Iwanami Shoten Publishers
This led to a month long book tour in Oct. ‘09 to promote organ donation
and CF awareness in Japan
A Memoir by Isabel Stenzel Byrnes and Anabel Stenzel
University of Missouri Press2007
Why Japan?
• There are 37 CF patients in Japan.• The median life expectancy of CF Japanese
patients is 15 years. • As a developed country, Japan has the lowest rates
of organ donation in the world• Cystic fibrosis exists in Japan but is
under-diagnosed and undertreated• Due to cultural traditions, illness is shameful and
private, so patient advocacy is limited
The Power of Two Movie:A documentary film to examine the
cultural influences on organ donation, living with illness, and patient advocacy
National Festival Tour:
Los Angeles: Aug. 19-25New York City: Aug 26-Sept. 1
Boulder, CO: Sept.3San Francisco, CA: Sept. 9
Richmond, VA: Sept. 13Washington DC: September 15
And many other locations!
www.thepoweroftwomovie.com
What Physical Chronic Illness Cannot Do
Chronic Illness Is So Limited
It cannot cripple LoveIt cannot shatter HopeIt cannot corrode FaithIt cannot destroy PeaceIt cannot kill Friendship
It cannot suppress MemoriesIt cannot silence CourageIt cannot invade the Soul
It cannot steal eternal LifeIt cannot conquer the Spirit
Chronic Illness Wisdom
Chronic Illness Wisdom
“I try to live life according to these four words : desire, discipline, dedication, and determination. Without these, this disease is not beatable… Stay strong. Above all, keep breathing.”
-- Aliyah, 18 year old college student with CF
Final Message For Chronic Illness Families:
What’s Your Story?What Helps You and Your Family Cope?How Can You Express Your Experience?
Find Balance:Hope versus Realism
Control over Illness versus Surrender
I wish you well in your adventure!Contact: [email protected] and [email protected]
www.thepoweroftwomovie.com
ResourcesCystic Fibrosis Foundation (CFF) www.cff.org Cystic Fibrosis Research Inc. (CFRI) www.cfri.orgThe Breathing Room (Images of Adults with CF)
www.thebreathingroom.orgOrgan Donation information: www.donatelife.net www.unos.org Genetic Disease information: www.genereviews.org
Questions?Anabel Stenzel - [email protected] Isabel Stenzel Byrnes – [email protected]