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Thread: Best & Unique Practices for CF Individuals

  1. #1
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    Question Best & Unique Practices for CF Individuals

    Hi Fellow CFers,

    Hope everyone is having a wonderful fourth of July weekend! I've wanted to start this thread on best practices for a long time as I'm hoping to contribute my experiences to a group that has helped me tremendously over the years. Given I've been living with CF for nearly 40 years, with one of my alleles being the most severe class 1 CF mutation, I thought I would start a best (& unique) practices thread.

    Here are some best & unique practices for me (CF male diagnosed at age 2 in 1980):

    (1) On a daily basis, complete active breathing techniques while using the localized electro flow 5000 to pull deep mucus plugs out. Using this method, my plugs were usually green or brown, even if the plugs I could cough up with nebulized medications were only white / light yellow.

    (2) Exercise before you do your breathing - this was counter intuitive to me, but it worked as I found I was breathing the medication in deeper after exercise. Obviously, my sample size is only 1, so test out how the sequence of your active breathing techniques, other mechanical devices and exercise. FYI - if I was having a stuffy day, I would use Xopenex

    (3) On long car rides, play portable video games (if you don't become motion sick) and huff mucus plugs through active breathing techniques

    (4) use physical therapists at your center to teach you stretches to help stretch you torso, back and neck

    (5) Use BiPap / CPAP even for napping (most do it only overnight); get a bipap/cpap and oxygen generator (they work together) BEFORE your breathing gets bad enough that you need oxygen; be proactive!

    (6) For the most skilled and military compliant CFers: use the TRIFECTA of mucus plug purging – simultaneously use the electro pounder 5000 + bipap/cpap (over nose) + active breathing techniques (mouth)!!!!

    (7) Instead of using Hypertonic Saline which is acidic (CFers already have too much acid in them!), ensure your doctor prescribes PulmoSal which has a neutral PH.

    (8) Save time by walking on a treadmill while you do your vest and nebulized medications -- it goes faster if you listen to your favorite music

    I look forward to reading the best and unique practices this wonderful community comes up with!
    Will (heterozygous DF508 with antisense mutation(class 1 severity))

  2. #2
    My advice is more for psychological assistance. We all need help when life throws us down.

    During difficult times, I've found it helpful to read inspirational stories, either fiction or non-fiction. Books soothe my soul and renew my hope for the future.

    I have watched TV shows with motivational messages, such as, 7th Heaven. You can find it on Hulu. It's a great show to watch with your family. They teach good values to the kids.

    Think positively. No one has gotten anywhere in life with a negative attitude. It's ok to feel down in the dumps for a little while, but sooner or later you have to snap out of it. Surround yourself with positive and supportive people. A strong support system is important during those difficult moments. Negative influences will obviously have a negative effect on you.

    Find a hobby to keep yourself occupied while you do treatments or during longer hospital stays. Art is my therapy. I've done all kinds of crafts, beaded jewelry, card making and adult coloring.

    Keep a journal. Log your progress, even if it's the little things. I've even added bits and pieces to my writings such as, ticket stubs, receipts, photos, stickers and artwork.

    Listen to music. I love christian music, especially the Casting Crowns.

    Keep the faith. Read the bible, go to church and pray.

    All of these things have helped me get to where I am today. Maybe they will help someone else too.

    Hugs,
    AMBER 26yrs CF (Double F508DEL) Married
    CFRD, Double Lung TX 3-13-07, Kidney TX 7-2-07
    G-Tube, insulin pump, & cochlear implants

    Amber's Blog- A Creative Newmie

    God is within her, she will not fall -Psalm 46:5

  3. #3
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    Great advice both the physical exercises and mental/attitude outlook. My suggestion would be hydrate, hydrate, hydrate. We also do not use the word can't in our house. No excuses. Always at least try. Be consistent in treatments, medications and keep in the habit. I was so tempted to let things slide last week when ds' vest quit. He complained, kept asking when we'd be done with chest physiotherapy, when the replacement vest would arrive and it would've been so easy to just let him get away with not doing it or shortening the amount of times. But we persevered.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  4. #4
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    Best CF Practice - Sleeping Without Off-Gassing and Without VOCs (Tip#9)

    I want to add an additional helpful hint (#9) since I just completed wayyyyyyyy too much research to find the best possible mattress. I am probably a bit OCD

    Background: I was looking for a bed that would be ideal for my lungs pre- and post-transplant (currently listed for Tx). I want to avoid mattress off-gassing and VOCs to keep my current and future lungs in the best shape for as long as possible.

    Based on my research, 3 certifications are critical to ensure a "healthy" mattress: GOTS, GOLS and Greenguard. Effectively, these certifications mean no chemicals were used to manufacture the bed, the bed will not have any off-gassing and that a 3rd party has reviewed the manufacturing process and materials and “certified" that indeed organics were used.

    I researched saatva, zenhaven, naturepedic and a number of other mattress companies – either the process (talalay latex creation uses non-organic chemicals) or the end product did not achieve these third party certifications. I ended up going with Lifekind (Lifekind.com) as they achieved all of the certifications above (and more) and had non-commissioned and strong customer service (5 stars! Thank you Sarah!)

    Although I just ordered my Lifekind mattress (the "Euro" Twin XL) -- I will post again in 3 months’ time on how I am sleeping and how my lung health (FEV1) results are trending. Sleep is such a crucial part of my CF regimen that I hope this post helps others! Thank you again for sharing your best practices!

    With hope for the future,
    William (heterozygous DF508 with antisense mutation(class 1 severity))

  5. #5
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    What is pulmosal? It's the first I heard about it.

  6. #6
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    Pulmosal is 7% salt, (sodium chloride) solution for nebulizing. I am using it as are many if not most CFers as part of an airway clearance protocol. There's a little controversy over it's use but it's rare occurrences when changing the pH in the lungs could give certain pathogens an improved environment.

    It's just salt water and the body is going to restore the pH in the airways quickly. It's going to take a prescription for it and it is well worth discussing it with your doctor. Generally speaking, it's great compared to more medicine, it really loosens up mucus, breaking it up for easy expectoration. Saline solution at 7% concentration is going to wipe out most bugs on contact with out doing any damage to the delicate lung tissue and mucosa.

    Anyway, hope that answers your question,

    LL
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

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