Have your symptoms been steady or deteriorated?

Posted , 12 users are following.

Hi,

Please forgive my curiosity - I'm newish to this lung disease (as I've only recently begun showing it respect after 5 symptom-free years).

I wouldn't say I'm short of breath, but i wheeze more now and have a chronic cough, producing thin clear frothy mucus with every cough and it's frankly relentless - after 'enjoying' 5 years with just rales at night and extra mucus only when working out on my bike (no cough). After a sputum test coming back 'satisfactory', I'm impatiently awaiting a consultation in late October with a cough specialist, and part of me is wondering what I should be doing in the meantime to prevent further damage. Seems as if antibiotics wouldn't help given the fact that no bugs were found in the sputum.

I would just like to hear other's stories as to what symptoms they began with and how long it was before a change.........and how you coped / combated the disease.

Thanks in advance for your wisdom.

0 likes, 39 replies

39 Replies

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  • Posted

    Hi Dave . I'm in UK. I contracted this about 18 years ago. dust from upholstery, they said it was asthma and I got symbicourt steroid inhaler. I told every medical person I saw that it wasn't asthma but it took 15 years and me nearly dieing with sepsis before it got diagnosed. I was given the huffing breaths to do,I was given an acopela (may not be spelt right ) at the hospital. I have since got a Flutter, you can look this up on Google. these devices send vibrations down the lungs to help get crap up , since I had more than three lots of antibiotics and steroids a year for chest infections iv have to take low dose antibiotics three times a week. AZithromycin. as you have heard try to see what makes the crap worse in the first place. I find being in Lanzarote a great help fresh sea air keeping away from people with colds. I am retired now so we spend as much time in Lanzarote as we can . hope this helps .

  • Posted

    Hi Dave . I'm in UK. I contracted this about 18 years ago. dust from upholstery, they said it was asthma and I got symbicourt steroid inhaler. I told every medical person I saw that it wasn't asthma but it took 15 years and me nearly dieing with sepsis before it got diagnosed. I was given the huffing breaths to do,I was given an acopela (may not be spelt right ) at the hospital. I have since got a Flutter, you can look this up on Google. these devices send vibrations down the lungs to help get crap up , since I had more than three lots of antibiotics and steroids a year for chest infections iv have to take low dose antibiotics three times a week. AZithromycin. as you have heard try to see what makes the crap worse in the first place. I find being in Lanzarote a great help fresh sea air keeping away from people with colds. I am retired now so we spend as much time in Lanzarote as we can . hope this helps .

    Pam

    • Posted

      Hi Pam,

      I am 49 with two daughters who have just started primary school, so retiring to sunnier climes is sadly a long way off! Guess I left things a bit late in life.

      Reading Sue's comment about pollen (I used to get hay fever pretty bad until my late 20s) is giving me hope of some respite this autumn / winter. Fingers crossed.

      Dave

    • Posted

      sorry Dave I did not think this answer had shown. that is why I put a shorter answer later lol.

  • Posted

    Hi Dave. it took 15 years before they found out what I had , they kept saying it was asthma I said it was not , it took me to nearly die of sepsis before they did in both scan and found out. I'm now on low dose antibiotics every other day. and fostair inhaler.I was given a Acapulco devices at the hospital it vibrates into the lungs. I also got a flutter from Amerson. I live in the UK. but got to Lanzarote for winter. most of the time I am stable as long as I keep out of the garden and away from dust. I am retired so at least I do not have to work. hope this helps . Pam.

    • Posted

      Cheers Pam. Yes, all comments have been helpful and I have plenty of ideas and suggestions now that I can air at my consultation. An inhaler that works would be good - as I'd like to avoid antibiotics until I really need them. We'll see.

  • Posted

    Hi Dave,

    Another reply from the US. I have had this BX for at least 20 years and just as I was beginning to feel I was managing it, something showed up on a lung X-ray that my pulmonologist could not explain - a narrowing of the space in my right lung. This was last June and there seems to be no explanation but meantime I needed to start using supplemental oxygen. I am now 76 years old and life has gotten a lot more difficult. I used to be healthy and fit but now I have a hard time getting around.

    Anyway, my advice would be to stay away from medicines as much as you can. They all have unwanted side effects and there are many natural things that can do the same thing. Do your research - use the internet - talk to people. Eat clean, natural food, preferably home-cooked or raw, organic if you can afford it. Mucus clearance is extremely important. I started with a flutter valve and now I use a prescribed saline solution through a nebulizer. Yoga type exercises also help a lot to get the mucus out. When I got regular in doing the nebulizer twice a day my chronic cough stopped. For the occasional infection with colored mucus I obtained prescriptions of antibiotics. I use some food supplements but try not to get food carried away with that. Exercise helps a lot. For inspiration there is a booklet "Beating Bronchiectasis" by Daniel Pecaut that is available as a Kindle. My pulmo said that what happened to me is not typical and unexpected. I hope you do better.

    Good luck to you.

    Louise

    • Posted

      Hi Louise,

      Thanks for that helpful reply - I will seek out the book you recommended.

      I really hope you start to improve despite the recent downturn. The fact you mention 20 years of relatively normal life gives me hope that I can be an active father to my twin daughters and at least get them through school and hopefully to university.

      Cheers,

      Dave

  • Posted

    Hi Dave,

    Good to get your response. I like your motivation for staying healthy - seeing your twin daughters through their education. I wish you well with that. When things get tough and you want some support, I hope you'll reach out again.

    Best,

    Louise

  • Posted

    Cheers Louise.

    Your mention of Yoga could be timely as my work place have set up a class on Friday lunchtimes which I might just try. I guess I could then apply it at home to help with clearance. I'm a total newbie and expect I'll be groaning as a result of muscle cramp at the first session!

    Thanks again.

    Dave

    • Posted

      Hi Dave:

      That is great, you can take a yoga class at your job. It is good to have exercise you can do at home when it is tough to do so outside. I have been doing yoga for some 25 years and it has helped a lot with my health. At first I did Astanga Yoga, an intense kind which they now refer to as flow yoga. Now I do a more sedate version, Ayengar.

      I recently had to stop the exercise classes at my gym because of lack of breath but I now found a place where one can do cardio-type exercises while receiving oxygen. It is a kind of physical therapy where you get a certain number of sessions that are paid for by insurance. I am starting on Friday and I am hopeful it will help me be less short-of- breath. I hate being attached to tubes and dependent on machines for air to breathe. Let us know how you do with the yoga and the mucus clearance.

      Best,

      Louise

    • Posted

      Hi Louise,

      I missed the taster session but the Yoga classes begin in early October and will be every Friday. I have never tried Yoga in my 49-year life so I have no idea what to expect......I've always done weights or cardio exercise, although the routine was hit hard once my kids arrived!

      Dave

  • Posted

    Hi Dave,,,, I've had mine for 13yrs. The past 2-3yrs I've noticed a increase in couphing..and phlem. Sometimes its hard to talk to people with out going into a couphing fit. I take my puffer once a day,,,, a cold med to help dry up my lungs and help with couphing and suck on alot of couph drops. Its getting very annoying... but I muddle thru. 😃 Good luck

    • Posted

      Hi Debbie,

      I'm already on the cough drops while I wait to be prescribed some 'proper' medicine. Do you use a flutter device or do huffing first thing in the morning to clear your lungs or do you rely solely on cold meds?

      Thanks,

      Dave

    • Posted

      Debbie, the muscle action and internal vibrations set up by talking help loosen the phlegm & make it come up. If you did breathing exercises or even at least 5-10 minutes of loud humming a couple of times daily, that would help. As would regular huffing or use of any acapella or flutter device so long as those have been set properly for your lungs & you've been taught how to use them effectively.

      You mentioned that you use a cough med to dry up your phlegm. It is possible that this makes your life harder in that dryer mucus is much harder to cough up.

      You might want to mention to your medicos that things have changed in terms of coughing & more phlegm.

    • Posted

      Hello ,,,Never heard of humming or never shown exercises . ..... and I do not use a flutter device.. never found it worked.

      Cough med works great. Helps me stop coughing and I can breathe much better. I seem to cough worst in the evening.. so I pop a cold med (if I need, not something I do ever day) then. I don't cough up that much phelgm. I used to have Dry Broch. Never coughed anything. Its only been the past couple of years that I now have phelgm. I see my lung Doc. every 6mos so she knows what is going on and is fine with the cold med.

      Fyi :Cold med type is for dry cough and stuffiness.

      😃

    • Posted

      My cough is also a late afternoon / early evening pain in the........! But I seem to be much better when horizontal at night (which suggests pleurisy, but the CT scan didn't reveal any fluid). Good to hear a case where simple meds controls the condition, as the mucus clearing routine does sound daunting to me if I'm honest.

    • Posted

      I asked my Doctor about when being horizontal at night seem to be so much better. He said that is common and they don't really know why. Just being that position seems to ease/calm everything. Being able to get a good nights sleep is important. I guess in the end... everyone finds a tip or trick to help ease their condition and enjoy life. My mother once read that singing is good.. as it strengthens the lungs. 😃

    • Posted

      Hi Debbie

      I sleep on a wedge pillow, eases acid reflux for me. I hum to myself in the car, not on oxygen when driving, it helps me regulate my breathing and breathe from the diaphram and keep from over breathing I choose Phil Collins song as they have a good rythme and I like his voice, have the CD on repeat.

    • Posted

      'Take Me Home' is a good one to get me singing........and relevant to half my car journiea too! 😃

    • Posted

      The humming is something i know about from professional narration and voice over work & all the pro actors/acting teachers i worked with. i have 1 college friend whose doc in Bisbee AZ (Podunk USA) told her to hum, but that's it. If you're narrating/acting, you've got to do everything you can to clear your lungs before you start. (i can't do voice work any more -- damage from all the phlegm coughing before i got to cureent doc.)

      An Acapella has to be set to your situation by a medico, and you need in-person coaching to do it correctly & to build the muscle memory of how correct usage feels. They're supposed to be replaced twice yearly, i believe. Zero experience with other similar devices.

      Some folks in the UK get Pulmonary Rehab & learn breathing exercises there; very few Americans get it unless and until they're at 25% lung function. The rest of us learn breathing and clearance exercises online.

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