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Favorite tips/tricks for living w/ lung disease

Was just wondering if you guys have any favorite cheats, tips, tricks and hacks to make living life with chronic lung disease easier? 

Things I’ve learned thus far from you all:

meds: budesonide needs to be swirled back into solution and should be nebbed solo or it foams like nuts

neb care: pari sprint nebs are worth every penny, boiling in distilled water eliminates nasty grime on your equipment 

portable nebs: be sure to register your battery and device

Inhaler technique: hold dpi’s flat like a hamburger but suck like a milk shake

med adherence: pill minder app for steroid tapers, keep meds visible in areas you are likely to encounter them and need them

surviving prednisone: puzzles to keep the mind busy, channel the energy of high doses to prep for the weaning lethargy, antiacid for stomach upset, Benadryl for sleep, apologize/warn family of the mood swings/irritability.

post hospital: keep a journal to help see the little daily improvements 

 

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  • Shea

    Love those! You really hit them on the head. The only thing I'd add is:

    -practice avoidance of triggers–especially in your home environment (allergens, chemicals, bacteria/viruses) by not keeping pets or plants your allergic to, using asthma-friendly green cleaning products, using extra care if a person you live with is sick)

    -carry an asthma mask with you in case you tun into a trigger while out (especially useful in stores with perfumes or that spray chemicals on clothing–as many do)

     

  • Melissa G

    Great topic! 

    Keep track of prescriptions and when to refill along with their expiration dates. 

  • Emelina

    Melissa, have you figured out a good way to do this (track refill & expirations)? For me right now it’s a jungle. Every week it’s a shake test. 🙄

  • Wheezy Me

    Warm yourself and your airways during winter (clothing, heating devices, hot beverages etc).

    Get the flu vaccine (and pneumococcal one too if your doctor recommended it).

    Stay physically active… as much as possible.

    And find sources of support and a good sense of humor!

     

  • Wheezy Me

    Just an opportunity to say thank you to everyone for being part of this wonderful community. I love this forum!

  • Emelina

    Shea, Melissa and wheezy me, thanks for sharing your tips! Keep them coming, they are all so useful. Yes, I’ll jump in with ample thanks as well for this forum and safe space for us. Your guys’ company and guidance is priceless. It’s everything you wanted to know about living with lung disease that you can’t find anywhere else and a wonderful source of support on the good days, tough days and everything in between.

  • Melissa G

    Wheezy me, I agree! This forum is amazing! 

    Em, I put a lot of stuff on the calendar on my phone and set up alarms to remind me. 

  • Deborah Bartlett

    Always remember: If you are having a problem on a Friday: Call the doctors office at least 2 hours before they close for the weekend. It could save you a trip to an  Urgent Care Walk In.  ✔

  • Wheezy Me

    Rach, there are many different lung diseases and some are typical to different age ranges. Yes, it is possible in any age.

    Why do you think you have a lung disease? Were you tested?

  • Emelina

    Hmm, I can’t remember where I saw it mentioned … do you guys have favorite breathing exercises? I remember someone mentioned diaphragmatic breathing and it felt really good. I noticed today I tend to breathe very shallowly when feeling tight which just worsens the dyspnea. 

  • K8sMom2002

    My mom's respiratory therapists suggested she use pursed lip breathing. I've asked my doctor and she says that if it helps me, then by all means use it. 

    Let's see … my number one tip would be to know your inside and out. Over the years, I've talked with my doctor and my daughter's doctor about each of our plans and gotten such good feedback about what to do when. 

    Emelina posted:

    Melissa, have you figured out a good way to do this (track refill & expirations)? For me right now it’s a jungle. Every week it’s a shake test. 🙄

    When you say "shake test," are you talking about your rescue inhaler? Can you check your inhaler's prescribing leaflet and see how many puffs it comes with?

    And then could you calculate how many days' worth of meds are in the inhaler based on your dose?

    I like the way the explains it this way

    If you use an MDI [metered dose inhaler] every day for control of symptoms, you can determine how long it will last by dividing the total number of puffs in the MDI by the total puffs you use every day. For example: 2 puffs x 2 times per day = 4 total puffs per day. At 120 puffs, the MDI will last 30 days.

    Then you can set up an appointment a couple of days ahead on your phone or your computer to remind you to refill your meds.

    I do the same thing with expiration dates — when my DD gets new epinephrine or asthma inhalers, I set up an appointment on that expiration date on my calendar to remind me to go by the pharmacy or call the doctor's office. 

    I learned many of these tips in AAFA's  online course — a great course that's FREE!

  • LK

    Partway through that course, Cynthia!  It does have some really good tips!

  • Pljohns

    that is a REALLY good course-I've finished it and it reminded me about a lot of things-

  • Emelina

    Do you guys have any thoughts on must have chronic lung disease supplies/tools? Recently these bad flares have been tanking my o2 sats down to 89-90%, so I just bought a pulse ox for spot checking at home when feeling poorly, any other must have supplies? 

    Other things I’ve thought of: 

    – asthma mask

    – steroid/medic alert bracelet if on chronic pred

    – spares handset and filters for the nebulizer

  • LK

    Em,  I have a pulse ox, too.  Sure is "interesting" seeing my pulse race after the nebs!  

    Good list!  

    Asthma mask is a great idea.  If you can, have two.  If you have the washable kind then you always have one if one is drying.  If you have the unwashable kind then you always have a backup if something happens to the first one.

    Maybe a rechargeable or battery operated nebulizer for if you are somewhere without power.

    Even if you are not on continuous pred, a medic alert bracelet is a great idea since it can have your emergency contacts and your meds on it.  

    I always need chapstick/lip balm for after rinsing my mouth after inhalers/nebs.  Sometimes if my lips are especially dry, like this winter, I put a little A & D Ointment on them.

  • Deborah Bartlett

    A pulse oximeter is a great little tool! I have one too. 

    I even have some disposable paper masks in case I am outside and want to toss the mask when I am done with it. 

    I always have spare nebulizer accessories….med cup, baffle, mouthpiece and tubing…plus filters. When I gave 1 spare of anything left, I order more. I also have spare filters for my masks. The filters are not washable. I have a portable nebulizer in case the power goes out. It runs on batteries or can be plugged into the car. I have plenty of fragrance free tissues on hand. Chapstick is always found here…and in my purse. I have learned to save any prescription boxes…for example from inhalers and ampules.If there is a problem…such as a defective item, you will need the box in order to get a replacement. I have gone through it. If you drink bottled water, keep alot on hand. Don't forget extra batteries for nebulizers…if needed. 😷

  • Wheezy Me
    LK posted:

    I always need chapstick/lip balm for after rinsing my mouth after inhalers/nebs.  Sometimes if my lips are especially dry, like this winter, I put a little A & D Ointment on them.

    My lips are always dry, no matter what… but having a balm on hand sure helps. I used to have one on my desk and one in my bag so that I can use them whenever I have a moment (now I have one and tend to forget…).

    I found that washing my throat well (as after using an inhaler) can help get rid of phlegm, which is really bothersome especially during winter… and I always keep a bottle of some mucolytic syrup at home in case it gets worse.

     

  • Emelina

    Thanks for the suggestions all! I think I have 4 chapsticks near or on me at all times (car, desk, coat, purse)

    good idea to keep the boxes Deborah!

    good point about the bracelet Lisa! It’s amazing, some of the bracelets totally fly under the radar! Maybe I’ll be hip and get an anklet.

    Howdy wheezy, what type of mucolytic syrup do you use? Something like a guaifenesen?

     

  • Wheezy Me

    Emelina, I use carbocysteine. Never tried guaifenesin.

    Does anyone have other tips regarding phlegm/mucus, BTW?

  • K8sMom2002

    Em, I highly recommend a medical ID bracelet — and I'll share the advice we got from EMTs: "You want it classic and easy to find — on your left wrist where EMTs will check for vitals. Don't make it look too much like jewelry and make sure that the medical ID universal logo is very easy to see."

    From my own experience, if you can pay a bit extra to have dark letters when you engrave your info, definitely do it. 

    My doc has suggested staying hydrated is a good way to keep phlegm and mucus thin. Everyone has mucus, she says … it's just when it gets to be too much or too thick that it becomes noticeable.

  • Melissa G
    K8sMom2002 posted:

    Em, I highly recommend a medical ID bracelet — and I'll share the advice we got from EMTs: "You want it classic and easy to find — on your left wrist where EMTs will check for vitals. Don't make it look too much like jewelry and make sure that the medical ID universal logo is very easy to see."

    Dh, ds and our youngest dd all have medical id bracelets. I wanted something that any emergency personnel would know what it is. 

  • Wheezy Me
    K8sMom2002 posted:
    My doc has suggested staying hydrated is a good way to keep phlegm and mucus thin. Everyone has mucus, she says … it's just when it gets to be too much or too thick that it becomes noticeable.

    Thanks Cynthia! I do drink a lot, to a degree that earned me several jokes about my "buddy bottle"😉 which I take anywhere. I find it helpful as you said.

  • Emelina

    Thanks wheezy me, carbocysteine? Never heard of it, will have to look for it! Thanks for the tip.

    Melissa and Cynthia, great tips about picking out the bracelet and making sure it is readily identifiable and putting it on the left hand side. Some of the bracelets are so pretty they don’t even look like a medical ID, which you’re right, could be a big problem in the middle of a chaotic poorly lit emergency situation. Especially since I’ll have to start traveling for work, this is a no brainer. Also it’s pretty cool that you can put emergency contact info on your bracelet as well. 

    Funny story about mucus and phlegm. I worked around lots of gastroenterologists and pulmonologists. The funniest thing is you can tell what each does by their reaction to 💩 or airway mucus. To each their own I guess. I could never do 💩! I’m so bad I try to weasel out of baby diapers if I can, but messy noses, no problem!