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Mucus Is My Superpower

Saw the doc today because I'm just struggling to keep my lungs clear. Then I catch everything that comes along. More mucus, more inflammation – vicious cycle that I can't seem to break. Mucus is my super power!

He wants to hit things hard to try to calm things down and keep it that way. Switching up my inhaled steroid to neb to see if that helps . I also get to add the budesonide to nasal rinses. Nothing new, but not excited about it. Guess I'll be working on my Duolingo while I neb! I wish mine was quieter. What do you do while you neb?

Also adding saline neb for when my chest is junky and nothing else will loosen it up. I sometimes "steam" my lungs in a hot shower to try to loosen things up. Anyone else have saline for their neb? Does it help?

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  • Shea

    Lol… I love that title Kathy! I suppose wheezing is my super power!!! I feel like I always have a wheeze of some sort or another, and tension in my upper back. 

    Nebbing works best for me–but it is hard to squeeze in the nebs sometimes. Sometimes in the morning I will start doing it while making my bed, or folding my clothes. Sometimes I will actually try to relax. Sometimes I watch TV with the captions on. I try to keep my neb right next to my bed, plugged on and ready to go, so that I wont "run outta time" to do it. I have been esoecially bad during the move transition, but I really need to do it 2 times a day. Sometimes I come on here and post when I am doung ut. 

    I dont have saline for my neb, but I am considering trying the MyPurMist Handheld Steam Inhaler in addition to my neb:

     

    Does the saline help you? Do you get that OTC or ordered from the doctor? I hope that this treatment puts an end to that viscious cycle!

     

  • Kathy P

    That steam inhaler looks interesting…I gavhave heard of it before. I just use my shower!

    I haven't tried the saline yet. The difference will be that it's a cool must in the neb. Im hopeful that it helps when things are really junky. 

    It's still on order at the pharmacy. My Albuterol tablets are ready for pickup, but the saline is not yet. Doc called it in as an RX. There's actually a broncosaline solution . it took him a while to find it in the system! 

    Something is helping….the really thick stuff is loosening up and I'm able to cough it up. I'm exhausted from coughing, but I just want this stuff out! I feel like I'm in one of those Mucinex commercials! I did the combo neb last night and this morning – xopenex and budesonide. I used my Ventolin in the afternoon which kicked off another coughing jag. Now I'm feeling things thicken up again, so I'll do my evening one. 

  • Marie E Natzke

    KathyP, Shea, one of the ENT doctors I went to told me to use My purmist. It seemed to help in the beginning but the last couple of times I used it it made me feel worse. What they don't tell you is you have to buy special water from them to use. Just a heads up. 

  • Shea

    Thanks Marie for the info on the my pur mist. Id imagine hard water would clog it up with residue. Im thinking of trying it out. Steam showers do help me too but I am used to nebbing 2 x a day and I shower every other day (unless Im outside a lot sweating or dusty from cleaning but I rarely do thise things back to back because I try to pace myself and allow recovery time). 

    Thus morning Im super stuffed and congested from my cleaning the old house yesterday. It was super dusty. Im a mess. 

  • K8sMom2002

    Hugs on the congestion, Shea! I hope things settle down SOON so that you can enjoy your new home!

  • Kathy P

    Boo on being congested from cleaning Shea! I was worried about triggering that myself the other night when I tackled dusting under the bed and all dressers! How are you doing now? Has it cleared up?

    I'm slowly clearing the mucus out! I'm down to an occasional cough and it's not too bad. But there is definitely still junk in there. Just so frustrated! But my numbers are trending in the right direction!

  • Shea

    I am doing better. I rested alot today earlier on and then was able to clean the new house without flaring because I used my good Hyla vacuum (so much better than sweeping or using a regular vacuum). It feels good to breathe in a clean home!

    I am glad you are going in the right direction of recovery–I bet you will be feeling all better in no time now! You will have to find a new superpower 😀 !

     

  • Kathy P

    I'd love to find a new superpower!

    And woohoo for getting serious cleaning done without a flare!

    I'm continuing to improve! Slowly the mucus continues to loosen deeper and deeper. I guess I hadn't realized how bad things were for so long. 

    I'm continuing the xopenex and budesonide nebs twice a day. Plus the nasal rinse with budesonide every other day. 

    I picked up the Albuterol tablets and the saline neb solution – but haven't used either yet.

    Today I rode 25miles and it wasn't terrible LOL It wasn't perfect and I still had some issues, but it was greatly improved over the past 2 rides. I had "reserves" where I could increase my effort to get up a hill. I wasn't flicking the shifter to get to my lowest gear. My HR was still pegged most of the ride, but I wasn't struggling as much or as out of breath the whole time. 

  • Shea

    Wow, that is great that you got a good ride in! (Even though it is not perfect yet, it is going in the right direction and that is good!)

    I have my exercise bike set up in a front screen room, so once I finish doing lawn-work and sorting boxes, I can schedule in exercise-bike ride time. Once I get to a good level on that, I'd like to start going on little bike rides with Tommy. For now, I walk while he rides–another great thing about our new neighborhood is sidewalks, so we will start doing walks/rides soon.

    Let me know if you start the saline in tbe neb–I am curious about it. 

  • Kathy P

    That's great that you an exercise bike set up. Sometimes I wish I had a trainer for when I just don't feel like riding outside. And riding with Tommy will be great. Do you have any parks or bike trails?Got another ride in today once the rain stopped. Ugh I'm tired of the rain! My lungs were feeling a little junkier than yesterday. We did about the same distance that I did yesterday (25) – maybe a mile and a half less. The afternoon winds are miserable and it just adds another hindrance! Yesterday was relatively flat but today we did a route with hills. So more difficult. My lungs are still not as clear as I'd like, but slowly moving in that direction.But… with all the rain, mold is way up. That's one of worst asthma triggers. It's seems to skip annoying allergy and just flares my lungs. The tree pollen is hitting my nose. And the cold air for a trifecta!It's supposed to be nice tomorrow, so hopefully a long training ride. Fingers crossed!

  • Kathy P

    Things have slowly been improving. I don't know if it's the nebs instead of inhalers. Or the second round of antibiotics .

    But now along comes pollen! I'm sneezing my head off. My ears itch like crazy. I'm hoping that since I seem to have the baseline mucus under better control, spring allergies won't flares things too much.

  • Kathy P

    I've learned something about my mucus production….it's definitely environmental!

    We were in Mexico for 4 days. It was an area of coastal desert – nothing grows there but ocotillo and sage brush. Seriously the desert! It was dusty/sandy. We were there for off road racing, so also lots of less than EPA approved exhaust fumes too. And I had no asthma issues after the first day! Our schedule was wonky, so missed nebs. 

    Then we get home Monday and I was still feeling good. Even after the stale smoke room Sunday night.

    24 hours later, I'm a hacking, mucousy mess! WTH?

    Haven't had a chance to talk to the doc yet – he's out of the office for 3 wks. All my blood work is back too – and all w/in normal ranges. Except for pneumo titers, so need to go get vax next time I get my allergy shots. 

  • Melissa G

    Glad to hear you did so well while you were away, but ugghh on returning and the asthma symptoms returning. I hope your dr can come up with a good game plan.

  • Kathy P

    Yeah, I think it's pollen! Last night was not too bad. I slept well andeven felt pretty good this morning. BUT it rained last night! As thingsdried out today, it's been getting steadily worse. UGH!I checked the predominant pollens and ash/olive are high. Guess what Itest class 4 to….go ahead, guess! Yup!What was even more depressing was that today was listed as medium level.It's supposed to go up to high for Sat…when I have a 100K bike ride

  • Shea

    Kathy, I was the healthiest when I lived in Phoenix, Arizona for the same reason– here in Florida high pollens all the time :/  I am sorry they are giving you such clear reactions– but at least you know what one of the main culprits is!

    I have been just going out when the pollens are lower later in the day. That and changing/showering. And trying to keep them outta the house. Avoidance is my main thing with allergens… It seems the easiest for me to keep a handle on… Because I cant get the allergy shots with my disease or they could flare it up, although the nucala had worked for me when I had the $$ help program… But since their funding went down Im just dealing. 

  • Kathy P

    I do get shots. But I'm behind with being flared so much. I need to quickly get back to maintenance before it gets cut in half for my remix. I didn't go this week because I wanted to wait til after my ride this weekend. 

    I don't know what's going to happen with biologics – my IgE was not high.