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: isa@stenzeltwins.com and ana@stenzeltwins.com

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 - amstenzel@gmail.com Isabel Stenzel Byrnes – isabear27@gmail.com