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
Reglois dave30131
Posted
I have 4 lung diseases including brochiectasis, the cough WAS relentless, I am on prednisolone (steroid) and that has help enormously with the cough, was on 2 1/2 mg per day but as my diseases (three cause coughing) march steadily on I have had to up it until I am now on 10mgs, I also take a cough syrup routinely at night, here called Bronchokod (here in France) rarely wake up coughing now, I also sleep on a wedge pillow, helps with the acid reflux and keeps the phlegm down so less urge to cough.
I really cannot give you any advice on how long to decline or what to do as I have probably had the bronchiectatis since teenage years, way into pensionable age now, had a lot of lung infections then. Is it getting any worse? no idea, probably not, as the others have speeded up badly, on oxygen now, 18 months after diagnosis.
estelle44124 Reglois
Posted
I don’t have too much trouble. Having said that, when I answered the phone just now I had to ask them to give me a minute while I had a really good cough to bring up some phlegm. My pulmonary consultant says referred me to his own bronchial physiotherapist nurse and she taught me a breathing exercise. It’s called huffing, and there was an article about it recently in a newspaper and you can find out about it here. Hope this helps a little. I do have a morning and evening steroid inhaler which I take one puff on each occasion
http://www.uhs.nhs.uk/Media/Controlleddocuments/Patientinformation/Heartandlungs/Bronchiectasispatientinformation.pdf
dave30131 Reglois
Posted
Thanks Reglois, I will mention those drugs at my consultation. Anything that arrests this cough will be most welcome.
Have you found that, despite the cough, exercise has always been viable? I keep reading that it's important to work my lungs.
Dave
dave30131 estelle44124
Posted
Hi Estelle. I recently started physio for a cerebral neck issue and the physiotherapist happens to be a respiratory physio expert from a past role. At the last session, she mentioned huffing, so I will look into it further.
Does mucus clearance have a marked improving effect on cough and shortness of breath or is it merely done to prevent build up that could attract bacteria?
Dave
Reglois dave30131
Posted
Morning Dave,
Sorry I was so rude yesterday as to not say hello and welcome before writing
Because of my problem with gas exchange I really struggle to get enough oxygen into my blood, even though I have a portable oxygen tank for when I walk my dogs, I am attached to a nose hose in the house. I try and get as much gunk up in the morning as possible as it definitely helps to relieve the cough. I do walk my dogs every day and it is a struggle in these mini mountains, I try and find somewhere flat as the slightest slope has me struggling to breathe, funnily enough I can walk for kms (at least an hour) on very flat surfaces, like for instance, the supermarket aisles, and hardly need much oxygen but then that is the quirkiness of my problems not just the bronchiectasis. Do hope you find something to relieve your cough as it is so exhausting coughing 24/7, besides the strained muscles and chest discomfort. At the moment I am coughing again because I stupidly mowed the grass, very dry after the heatwave here, but full of tall weeds, ride on mower and mask, but dust still crept in and now lots of gunk and cough, will I never learn, upped the prednisolone, helping a lot.
As regards prednisolone (maybe spelt slightly differently depending on where you live ie prednisone) I started off on a 20mg dose for a week, instant relief for me, bliss, then gradually whittled it down to as low as I could get whilst still retaining the good effect. Its job is basically to help in removing inflammation. Huffing is good too, never hurts to learn as many different techniques as possible, if one doesn't work try another. I accidently found a position on my excercise machine that helped me bring up the gunk when I was first diagnosed I have CPFE + Bronchiectasis + Systemic Schleroderma, greedy me. lol.
A bientôt Sue
dave30131 Reglois
Posted
Bon jour, Sue,
No need to apologise - any reply was welcome to be honest. I'm data gathering, and prefer to hear from people 'in the know' rather than trawl the official websites (one size fits all and generalising).
Sounds like you live in a beautiful rural part of France. I hope to arrange a cycling holiday there when my children are older (it's a bit selfish of me, but I attended a training camp south of Limoges in 2006 and vowed I'd return some day). Come the time, it sounds like I'll need to find a flat part of France!
I think you said you'd suffered from bronchiectasis most of your life, I hope you don't mind me asking, but when did the need for extra oxygen begin?
Dave
Reglois dave30131
Posted
Oxygen this May, diagnosed May 2018 !! Don't think the bronchiectasis was the cause but the CPFE, poisoned at work by Zinc Chloride, now used in chemical warfare, in those days no protection at all.
I live in the Morvan Natural Park, a little off shoot of the Massif Centrale, been here for 30 years, would never go back to the UK, not even when my husband died (worked in the same place as I did) was I tempted.
Bien cordialement Sue
jules27056 dave30131
Posted
Hi, after being diagnosed about 3 years ago and seeing my respiratory nurse I am so much better, but prior to this like you my cough was relentless. I was always having to leave my desk at work to cough clear mucus.
My coughing was due to the inflammation in my Airways and since taking my inhaler (brown preventer) it is so much better.
I do breathing exercises to clear the mucus and have learned to make this part of my daily routine. My infections occur every 5-6 months, I'm sure in time it will get easier with the right treatment and advice from your consultant. Stay well..
dave30131 jules27056
Posted
Thanks Jules. Is a 'brown preventer' a name for a standardised drug (maybe the same as used by asthma sufferers)?
I will consider this option and raise it at the consultation.
I'm not looking forward to a mucus clearance routine, but I'll do whatever is necessary to prevent infection and stave off the decline!
I was thinking of doing a short morning jog before work as a way of initiating coughing and getting mucus up, but I talk a good game, and cold Lancashire mornings in the UK will test my willpower to the limit 😃
Dave
jules27056 dave30131
Posted
Hi yes it's the preventative inhaler, Beclmetasone metasone given to asthma patients, which I was also diagnosed with when having routine tests done for bronchiectasis.
I know what you mean about the morning jog I'm in the Midlands and it's hard to get enthusiastic about exercise somedays, but it is encouraged.
You will eventually find what suits you best and keeping your lungs clear is the most important thing and eating well to look after your immuneity.
dave30131 jules27056
Posted
HI Jules,
I lived in Stafford for almost 10 years so I know how biting the midlands winter can be. I recall power cuts in the early 90s due to snow!
Dave
Reglois dave30131
Posted
Hi Dave
In the cold I use a scarf or snood to warm the air before it hit the throat, that staves off coughing fits.
aitarg35939 dave30131
Posted
Your cough needs treatment, Dave, so i'm glad you'll see someone soon. Have never heard of a "cough specialist" but have seen pulmonologists all this century, originally just for COPD. They were all pretty awful and i blew them off 10 years ago. My cough worsened over time & i assumed that it was just COPD progression. Wrong! A few years ago i repeatedly coughed bloody mucus up for hours, went to ER, went home, right up until they did a CT & said bronchiectasis & admitted me to get the cough and bleeding under control. Yes, things have gotten worse since then.
There are a number of different categories of inhalers, and different brands and/or delivery systems w/in each. Some use steroids & others don't. Which one works for which person is to some degree determined by disease and to another degree highly idiosyncratic to a given body.
The same is true for pill forms of steroids, i.e., prednisone/ prednisolone, etc.. Some do great on the inhaled stuff but nearly die on tablets, while that's reversed for others.
There's another form of med and delivery system, the nebulized meds some of which are steroids & some aren't. I use 3 different neb meds several times daily, plus an inhaler.
I also use an OTC mucus thinner, per my doc. My body requires a whacking great dose.
There seem to be 2 kinds of BX: wet or dry. Most of us here are latter-onset BX, with a smaller percentage having been diagnosed as children and told they were "dry BX" cases. No idea of the percentages out in the non-forum world.
As you may surmise by now, one needs the help of a lung specialist/consultant trained in all the meds AND different disease aspects. We here cannot diagnose you nor can we possibly know which of 30-40 inhalers might be best for you. And we haven't even talked about antibiotics. Contrary to that "satisfactory" on your sputum sample, BXers often have to take ABs somewhat prophylactically. The other question is whether they looked at that sputum just for something like pseudomonas or for lesser things, or both.
So take care of that cough and avoid ALL perfumed/scented substances, from the shower to what family members wear, to household dust and chems like Reglois', to the offgases in a friend's brand new house that almost killed me after 2.5 hrs of exposure last Xmas. I was on added ABs x 8 courses from 12.23.18 through June '19. Auto exhaust and pollens can also do most of us quite a turn. Trust that you do not want me to pull out my 10' high soapbox about the vile chems used to make scents in candles/air fresheners/laundry products last all day or 3 weeks, as those chems are known to be harmful to all lungs.
Pay attention to what worsens your cough & what times of day it gets worse so you can share that data w/"cough specialist" next month. Teehee, my pulmo will get a kick out of that term when i see him next month. Good luck.
dave30131 aitarg35939
Posted
Thanks Aitarg. That term 'Chronic Cough Specialist' was coined by my Pulminary Consultant who has passed me on to this alleged cough guru. The guy is very popular (but doesn't do privately paid for appointments), so I don't get to the front of the queue until late October.
I've tried Budesonide (aka Pulmicort), a corticosteroid, but it made no difference. That's the only treatment so far.
Dave
Reglois aitarg35939
Posted
Dear Aitarg
You put it all so beautifully, there are 1001 nasties out there that you don't even think about until you have a severe lung condition. Years ago I read about what fabric softeners do to household pipes, all clarted up, imagine what they can do to lungs !!! I live in pure air but when I have to go to the hospital in the big city here I am ill for days after from following traffic and all the build up of pollutants.
One steroid inhaler nearly killed me, now I only take athsmalor when I really have too. There is something around here that makes me worse every May, no idea what yet, have to work it out before next spring. Some sort of pollen? thought it was the rape seed pollen but this near none planted near me but had another exasterbation and was put on oxygen after, have an air scrubber by my front door but didn't help.
aitarg35939 Reglois
Posted
Was May windy? If the wind is high enough, the rape seed pollen might be blowing over.
We in Central Texas have been clobbered by the Sahara all summer long, so much of their dirt in our air that you can see it. Drove me to buy some good air cleaners, one for the living room & 1 for my bedroom. Dog has been bathed more frequently, gets wiped with wet cloth before bed time.
aitarg35939 dave30131
Posted
Sometimes you have to use several meds in conjunction. Nebulized Budesonide is one of my 4 Rx lung meds used 1 - 4 times daily, plus my OTC. I hope they can find just one thing to help you. With some of the puffers, you have to be on them at least 3 weeks before they really start to work. Talk to the CS, lol, to make sure you know how quickly any med should work.
dave30131 aitarg35939
Posted
Cough Guru.........I fully expect him (Paul) to look like Yoda! 😄
If I need several meds then so beit. Just want to start fighting this rubbish!
Cheers.