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Cystic Fibrosis

Cystic Fibrosis. An Inside Look into the Life of a CFer By: Jeremy Parks BS, RRT. Objectives. Learning objectives for this presentation: Provide a patient perspective of Cystic Fibrosis Detail what it takes to fight the disease

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Cystic Fibrosis

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  1. Cystic Fibrosis An Inside Look into the Life of a CFer By: Jeremy Parks BS, RRT

  2. Objectives Learning objectives for this presentation: • Provide a patient perspective of Cystic Fibrosis • Detail what it takes to fight the disease • Expose myths about CF & the struggles CFers and their families face • Inspire you to live life to it’s fullest and be the best therapist you can be AARC Congress 2012

  3. My CysticLife

  4. Living with Cystic Fibrosis Cystic Fibrosis – A hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, reproductive tracts and bronchi often resulting in respiratory infection.

  5. Whaaaaaat???

  6. What is CF to us as CFers? What CF is to us, is determined by how it affects our everyday lives • Depends on age and progression of the disease • Infant – 14ish: meant I had doctor visits every 3 months with chest X-rays and blood draws. Not affected. • 15 – 17: doctors harping about tx’s. Frequent “colds” • 18 & 19: First 2 hospital admissions 1 year apart. Began realizing maybe CF would affect me. • Has progressed and changed over the years since. • Research project at age 20 taught me a lot

  7. Lifestyle Disease • Lifestyle has to be molded around the disease • My typical day (8 hour work day, 8 hour sleep min.) • Treatments: • Pills every day/every meal • Breathing Tx’s/CPT (min of 2 hours a day) • Exercise – Necessity, Just doing tx’s not enough • My PFT’s and Treatments/Exercise • Doesn’t mean it has to affect the quality of life(initially) or limit your life

  8. MAGIC PILL What would you say if I told you I had a magic pill that if taken every day would: • Reduce Heart Disease • Prevent High BP • Good Cholesterol, Bad Cholesterol • Prevent Strokes, DM, Arthritis, Cancer • Put you in a Great Mood • Give you Energy • Help you Sleep Better • Jeremy, what is this MAGIC PILL you speak of????

  9. Exercise!!! • Exercising 30 minutes a day has been shown to do all the things listed on the previous slide! • New study by Dr. Mike Evans – Walking 30 min • Who exercises 30 min. a day? • Why Not?? • You know it’s good for you and will prolong your life so why don’t you do it? • Reasons why it’s hard to exercise (life gets in the way), same reasons CFers miss tx’s

  10. Attack! • Mentally, Physically, Emotionally draining • Tired of doing tx’s, tired of coughing • Tired of facing mental/emotional struggles • Just plain Tired! Fighting infection drains Energy (Dr. Rosenbluth & pseudomonas study) • Disease doesn’t sleep • Attacks 24/7, 365 until eventually it is victorious • CFers have to know that there’s no rest, no breaks from the disease, and we have to fight often and hard • With CF we know someday we will die because the disease will win. This can, at times, become a very heavy burden to carry. (P.S. I Love You)

  11. CF Parents • Spoil kids • Done mostly out of guilt for “giving” their child CF or feeling sorry for what their child endures • My momma and my CF

  12. Hey, It’s Party Time!!! “Pity Party” Phase • Every CFer goes through it • Some never leave it • Have to accept the disease for what it is, understand you can’t change it • Make the decision to fight or die • My Decision

  13. CF Spouses • “If you’re afraid of commitment, marry a CFer!” • Financial Hardships • Avg. cost $49,000 a year in 2011 ($9,800 if insurance covers 80%) • Avg. cost of lung transplant 2011 around $800,000 (Between $150,000 - $180,000 out-of-pocket) • Prolonged hospital stay prior to dying leaves spouses with immense medical bills after losing their spouse

  14. CF Spouses • Possibility of no children • IVF is $19,000, 50/50 shot at live birth • Knowing someday they’ll lose their loved one, possibly at very young age • Median life expectancy is still only mid-upper 30’s (cff.org) • Avg. is climbing but misleading • 10% of newborn cases die before age 1 • Always chance of death for anyone, but different when you know in advance someday your loved one will pass away from the disease

  15. We’re More Than CF Labels • We’re contagious • No kids • Big deal when talking about marriage • Will die young • Stomach surgery • Are sickly and weak • Heck no I’m not!!

  16. My Boys Born April 12, 2013 JaceWayne 5 lbs 12 oz 19 inches Jeriah Matthew 5 lbs 1 oz 19.25 inches

  17. CFer’s Requests and Gratitude for their loving RT’s • We appreciate adjusting to our routines & quirks • Please don’t treat us like kids • Some may act like it, but we all don’t • My dear little cousin Logan

  18. CPT • Hand clapping is more effective • If you’re not good, have no fear…. We’ll tell you. Some may be more shy, so ask. Then please, work on it • Don’ts: • Don’t use as a way to vent anger or frustration • Don’t do it really hard to try and make us refuse next time • We know you don’t want to be there doing it because it takes a lot of time and hurts (especially when done wrong) • We don’t either, getting CPT 4 times a day for 2 weeks wears us out, BIG TIME • Difference is: • You’re getting paid  • We have CF, you don’t

  19. Care • Healthcare – It’s in the name, “CARE” • Nothing worse than spending 45 min with an RT who has a BADitude • Fake it til you make it! • Want to get a frustrating CFer to do their tx’s? • Care • Develop a relationship with them • You’re there for 45 min make the best of it • YOU could be the difference in their lives, the difference they need to start taking care of themselves • Ronnie’s Friend • G.W.

  20. Care • 13100 Team great idea! • RT’s are most important person in our care! • Our time in hospital (The Hole) is vital • Once lung volume is lost, it’s lost • RT’s are key in our improvement, even could go as far as to say, our survival

  21. “Being healthy simply means you’re dying at the slowest rate possible.” - Anonymous As CFers this is our goal, to die at the slowest rate possible.

  22. THANK YOU!!! On behalf of the CF community, Thank you! Thank you for tolerating our unusual behaviors, our CF quirks, for beating on us, for taking the time to get to know us beyond “our disease” and thank you for caring! We really do appreciate it (even though we may not always show it)! THANK YOU RT’s!!

  23. My Contact Info http://jeremyparks.blogspot.com jeremyparks627@gmail.com

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