10. 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
11. 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
12. 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
14. 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
22. 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
31. Life After Lung Transplantation… Is miraculous! Is unimaginable! Is breath-taking! Is freedom! Support organ donation www.donatelife.net or www.DonateLifeCalifornia.org
32. Lung Transplantation : Our Generation’s “Cure” Over 20,000 transplants occur in the USA each year
33. The Heroes of Transplantation: The Donor Families Isa’s Donor The Cervantes Family Of Xavier Cervantes, 18 years old, Fresno, CA Ana’s Donor The Dorn Family Of James Dorn, 29 years old, Eugene, OR
37. 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
38. 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. 19-25 New York City: Aug 26-Sept. 1 Boulder, CO: Sept.3 San Francisco, CA: Sept. 9 Richmond, VA: Sept. 13 Washington DC: September 15 And many other locations! www.thepoweroftwomovie.com
39. Chronic Illness Wisdom What Physical Chronic Illness Cannot Do Chronic Illness Is So Limited It cannot cripple Love It cannot shatter Hope It cannot corrode Faith It cannot destroy Peace It cannot kill Friendship It cannot suppress Memories It cannot silence Courage It cannot invade the Soul It cannot steal eternal Life It cannot conquer the Spirit
40. 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
41. 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
42. Resources Cystic Fibrosis Foundation (CFF) www.cff.org Cystic Fibrosis Research Inc. (CFRI) www.cfri.org The Breathing Room (Images of Adults with CF) www.thebreathingroom.org Organ 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
Editor's Notes
CF background
Kids are doing better, living longer, but more challenges
OUR GENERATION. Parents immigrants; Diagnosed at birth in ‘72 due to Ana’s meconium ileus. 18 mon older brother, healthy. Healthy til 5, started treatments. Active family, swim team, hiking. Normal school, girl scouts, gymnastics etc. travel to japan, germany. Parents thought we wouldn’t live past 10, so gave us the best lives we could have
Frequent HospitalizationsWe spent a lot of time in the hospital. Nen ni nankaimo nyutai inwo kurikaeshimashita.We had chronic lung infections (frequent pneumonia?) so we had to be hospitalized regularly for powerful intravenous antibiotics. 私たちは、 まんせいて(chronic)きな 肺えん(haien)(pneumonia)に なり、つよい こうせいぶっしつ(antiobiotic)の てnてき(IV)の ために よくにゅういんしました。Watashitachiwa, manseitekina haienni nari, tsuyoui kouseibu'shitsuno tentekino tameni yoku nyuuinshimashita. These hospital stays lasted several weeks, sometimes every other month. １かい（いっかい）の にゅういんは すうしゅうかんにも(couple weeks)なり、ときには いっかげつ おきに にゅういん することもありました。I'kaino nyuuinwa suushuukannimo nari, tokiniwa i'kagetsu okini nyuin surukotomo arimashita. The hospital became our second home.病院が 私たちの だい二の いえに なりました。Byouinga watashitachino dainino ieni narimashita. This was very hard for my parents and my brother. これは、私たちの りょうしんや 兄（あに）にも たいへん つらい ことでした。Korewa, watashitachino ryoushinya ani nimo taihen tsurai kotodeshita. Sometimes Isa and I went into the hospital togetherイサと 私は いっしょに にゅういん することも ありました。Ana to watashiwa i'shouni nyuuin surukotomo arimashita. It was very helpful to share this disease with each other, because we felt very different from our healthy friends.じぶんたちが けんこうな ともだちとは ぜんぜん ちがうことを かんじていた ふたりに とって、二人（ふたり）が おなじ病気 だったのは、おたがいに とても ささえに なりました。Jibuntachiga kenkouna tomodachitowa zenzen chigaukotowo kanjiteita futarini to'te, futariga onaji byouki da'tanowa, otagaini totemo sasaeni narimashita. The nurses and respiratory therapists became our close friends.かんごしや セラピストとも、とてもなかよくなり ともだちみ たいでした。Kangofusanya kokyo serapisutotomo, totemo nakayokunari tomodachimitaideshita.
Took years to accept CF
Following Doctor’s Orders is Difficult20-50% of patients do not follow their doctor’s treatment recommendationYoung people want to be normal11 y/o child quote: "Healthy people spend their entire lives trying to be special; sick people spend their entire lives trying to be normal"Redirect frustration into productive, healthy outletsEducation on pros and cons of options is vitalNon-compliance is related to depressionNeed role models and supportive peers It takes a lot of time and effort to follow the treatments.ちりょうには とても おおくの じかんと どりょく(effort)が いります。Chiryouniwa totemo ookuno jikanto doryoukuga irimasu.Of course, not everyone has the discipline to comply with treatments.There were many positive aspects of Japanese culture-日本の ぶんかには 病気と たたかう(fight) うえで おしえられた ことが いろいろあります。Nihonno bunkaniwa byoukito tatakau uede oshierareta kotoga iroiroarimasu. …like enduring discomfort, perseverance and discipline, which helped us fight our disease. くるしい ときの がまん づよさ、 すぐには あきらめない ねばり(perseverance) づよさ、そして、なんでも きちんと ただしく やること などです。Kurushii tokino gaman tsu(zu)yosa, suguniwa akiramenai nebari tsu(zu?)yosa, soshite, nandemo kichinto tadashiku yarukoto nadodesu. So we did not rebel or skip our treatments. But Here are some ideas for what helped us to follow the treatmentsThe doctors educated us properly about why we needed our medicine, and what would happen if we did not do themWe had each other and many friends, a good family so we did not feel depressed to give up.This is a photo of doing my treatment in the car with a portable machine with my transplanted friend. We were camping together. This shows it is easier to be compliant when treatments are convenient and we have social support.
Family is a team; pt not alone
Provider was interested in what we were doing outside of diseaseA simple ‘thank you’ for doing our treatments, smilingAutonomy- ie desire to have home Ivs vs. inpatientIf relevant to patient situation, shares his/her own difficulties with healthy lifestylesPatient advocacy- tell story of IPV machine- did PubMed research, called company, brought in articles, dr. prescribed it.“I couldn’t even do that” – Henig responding to my jazzercise w/ oxygen; also Kristin and her exercise goals- emotional intimacy that conveys real-nessLaughter Bra extensions story
Surgical challenges: pain, swelling and insomnia. Antivirals antifungals and antibiotics. High doses immunosuppression; ICU about 4 days. Absolute last resort
Even Dad wrote as essay. Mother wrote breathing room poem. My sister and I wrote this book. It took 1 ½ years to write, at time when I was severely ill. James Pennebaker- expression is healing
HIROKI:(318)Organ donation allowed us to fulfill our dream of publishing our story. Watashitachi ga kono hon o shuppan suru to iu yumewo jitsukendekitano wa zouki teikyoshaga irashita okage desu. We are even more grateful to Iwanami for believing in our message and publishing our book here in Japan.Mata, watashitachi no koushita message o gorikai itadaki, Nihon de no shuppan o shitekudasa'ta Iwanami shoten nimo taihen kansha shiteimasu. 286We hope that our story can provide hope to others who are living with serious illnesses or waiting for a transplant. Watashitachi no hanashi ga, nanbyo de kurushimu hito ya, zouki ishoku o matte iruhito ni kibou o ataerareru koto o negaimasu.(300)Our book, Miracle Twins, was recently published by Iwanami. We encourage you to purchase a book if you are interested in hearing more about how organ donation changes lives. Watashitachi no hon, “Miracle Twins” no nakadewa, watashitachiga byoki de ikani kurushii omoi o shitaka, soshite, ishoku o uketakotode ikani kenkou de, jiyuu de , kikai ni megumareta subarashii jinsei ni nattaka o kuwashiku kakimashita. (s77)Copies of Miracle Twins are available for purchase here. The cost is 2000 yen. Please go to the table over there if you are interested in purchasing a book. Please see our website or Iwanami’s website for more information. Go-shitsumon-wa gozaimasen-ka? We have some time for questions.Please ask anything, we are very open. Mada jikan-ga arimasu-node, nandemo shitsumon shite kudasai.Watashi-tachi-wa totemo open-desu-kara, nandemo o-kotae shimasu.
