I am newly diagnosed, 54yrs old, 3 teenage kids and NTM to boot. I had very few symptoms- no weight loss, no night sweats. I had a poor appetite but that was nothing new for me and I was getting a bit tired but again... working full time, 3 teenage kids, running around .... and being 54yrs old, it seemed "normal". It wasn't. I was like a frog put into cold water in a saucepan and the heat gradually turned up to boil. My symptoms so mild I got used to them until one day.... mid September 2020, I had a CT Lung scan for my very mild but persistent cough when I lay on my back. Life changed forever. Tears...
Off to get a bronchoscopy. Collapsed in the waiting room. Code Red ... you know the drill. Discharged about 12 hrs later. Back in hospital a few days later with hospital acquired pneumonia from the bronchoscopy. Nearly three weeks in hospital.... dripping sweats...so many blood tests etc etc.
Now I've been home for nearly 7 weeks, the bronchiectasis is obvious. I cough every day and lots of phlegm still (green/yellow). Is this forever? The respiratory specialist says "I'm not worried" to me. He is giving me no information on bronchiectasis - and the scan says I have it.
I have a physical therapist who is getting me walking and by that I mean 2 x 25 minutes walks around my neighbourhood up and down some little hills. I find it pretty easy now but in the beginning all I could do was a few metres without wanting to die.... PROGRESS!!
I have also gained 2.5kgs or 5lbs which is a lot for me!! I was already underweight but the hospital stay took off 4kgs instantly.
I really need advice from people that are living with it. For me, I wake with lots of phlegm in my throat which I swallow and I would estimate I swallow maybe a good 2 teaspoons of phlegm - maybe it's 1, I don't know? (I got severe intercostal muscle strain from coughing too much so I need to ration my coughs as it is still healing). I use a PEP bottle for about 10 minutes in the morning and then try and cough up phlegm. About 1 in every 3 mornings I can get about 2 full teaspoons of phlegm that is green/yellow. They call them "plugs". I immediately breathe easier... literally. Evenings I try again and rarely get anything. Some days I know there is phlegm but it feels spread out over my lungs and I just can't get it up....and those days suck because I feel tired all day...
Oh, and my pulse rate is pre-NTM around 70 resting. Now it's 90 to 100 resting. I can see why I get tired.... I wake and it's 68 in bed on waking!! So I am wearing a monitor now for 24 hours to see what's going on in my poor heart...
Some weeks are good and I feel like the future is going to be okay. Other times, I start reading about stuff again and I become very tearful reading stories of people struggling.... I really wish the people with bronchiectasis that visit the doctor once a year but only for a checkup would create a website to give me hope.....
I am getting nothing from the doctors... just silence. I guess who cares about the bronchiectasis if you can't kill the NTM....it's all over red rover. I feel that is why there is no mention of it to me? The specialist is 65yrs+ and I feel checked out..
Any advice or details of your treatment would be great. I am on nothing for the bronchiectasis...
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Dernancourt2020
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Good news that after a horrendous year a couple of years ago with repeated colonised infections and pleurisy and all symptoms you talk about I've had a few good months infection free. I take Carbosysteine to keep sputum easy to get up twice a day and do breathing exercises which can be hard when you have been so ill and your intercostal muscles are so sore . Over winter months take a prophylactic antibiotic 3 times a week. Always have a "rescue pack" on standby of other antibiotics and saline nebulisers. The reason that am now so sorted is that I see a Specialist Bronchiectasis Consultant ( Not Respiratory ) and also a specialist nurse. If you are not happy with your Drs you can asl to be refered to someone else. A longstanding member of this community always says you have to be your own advocate in this game. I hope ths gives you some hope and you can be less fearful for the future
Definitely will be getting them!!! I drink nearly 2 litres of water a day. Am doing all my exercises and also blowing on that PEP bottle 15 minutes every morning. Huff coughing... and I can swallow phlegm but only get the very loose phlegm every 3rd day. However, I am sure I'm swallowing a lot each day.....
I tell myself "This is not a colostomy!!!!!!!!!!!!"
I don't have anything helpful to say but I just wanted to send you lots of good wishes and hope that you can find a specialist who can actually help and advise you 🤞
Hello Dernancourt, welcome to the forum. I was diagnosed with bronchiectasis just over a year ago, so I'm still learning about it. Your feelings echo how I've felt at times- will there be no end to coughing up green gunk and will the awful tiredness ever go away? Good news on the sputum front - for the first time in several years I'm not coughing up sputum. I don't know quite what I'm doing right- I do the breathing exercises morning and night, I have an Aerobika which my respiratory nurse got for me when I was very ill in the summer (that's the bad news) and I try to keep active.( Indoors at the moment; cold is one of my triggers.) The other advice I got was to drink lots of water. And decaff tea and coffee- ugh. Your building up your walks to 25 mins sounds brilliant. Keep at it-your progress with hills sounds better than mine. Tiredness is still a problem- you have to listen to your body and do what you can, not what you want to do. Sorry for rabbiting on. Hope this helps. It might be worth asking your doctor to prescribe an Aerobika or similar device to help bring up the sputum. I think that's what helped me to clear my lungs, though I know that another infection is always on the cards. Best wishes, Alberta.
Hi Dernancourt2020. Hold on in there - it will get better. I was diagnosed two years ago after being ill for 4-5 years - again only via an emergency. My infections were every six weeks and I was really very poorly. Earlier this year I was put onto Azithromycin and it has changed my life. It took about four months to kick in, but it is better. I am still tired and still can’t work full time - but I am far from where I was a year ago. It’s a bit of a slow process but there is light at the end of the tunnel. I find I don’t focus on the years ahead as that can be hard - I try and focus on now. Wish you all the best.
After diagnosis people are usually referred to specialist respiratory consultant, referral to respiratory physio to learn the ACB technique - its important you clear the mucus / phlegm daily, drink plenty of water along with prescription of carbocystein is prescribed to help keep mucus thin and more easily coughed up. Pulmonary rehabilitation may also help you if you have deconditioned . Treat all infections asap. The PR course will help you understand and manage your condition.
Often specialising respiratory consultants are very familiar with most all lung conditions including bronchiectasis as is was my own experience.
Don't hesitate to contact the BLF helpline if you are unsure about anything and the way forward. blf.org.uk/support-for-you/...
Hope soon you will be well on the road to managing your symptoms successfully and once again regain a good level of fitness and reasonable quality of life.
Best wishes BK
For Active Cycle of Breathing technique check out you tube, BLFs pages, but best to be instructed by specialising respiratory physiotherapist by referral either through your GP of consultant.
It’s a big shock when you get a diagnosis Ikethis.
You’ve got to cope with the physical side, you also have to cope with the effect on your mental health.
IhaveNSIP - lungs.
When Iwas diagnosed I was toldIwouldnt get better,perhaps they could control the symptoms.
I did some onlineCBT,throu theNHS.it was hard work.
I don’t know about bronchiectasis,but theBLF website and helpline are really helpful.
Th best thing to do is to AVOID DR GOOGLE.it will just upset you.
People who are coping well with their conditions don’t usually post,you Ned to keep that in mind.
I try to spit into a tissue if ai can,it seems to clear it better,but you Need to buy big tissues !
I used to cough for ever to try and cough the muck up,I was prescribed Carbocysteine capsules.they really worked for me,they thin the mucus hopefully.
Another game changer for me was an admission to hospital woth acute breath less ness.
They changed my inhalers meds etc and sent me home with a nebuliser. I’vemanaged not to have a chest infection this year. I’ve had other problems,related to lupus and rheumatoid athritis,
Ihave to say I appreciate that my condition is not the same as yours,,
But when you have chronic condition,we have to try to manage our health the best we can.
It’s a shame the drsare not more supportive. Do you have access to a helpline from the hospital.?
Thisforum is helpful as it offers support and a listening ear.
Takegreatcareofyourself. Please
AvoidGoogle,the only sites I use now are are NHS and British Lung Foundation.i learnt my lesson the hard way .
Treating brochiectasis is about clearing the lungs. Lie on the bed with it propped up (head lower down) do lung clearance every day (I do it 3 times). Kept clear of infections.I use a nebuliser and carbocisteine capsules to 'water down' the mucus. Also there are other devices, such as Mometasone nasal spray from the doctors and Sterimar Nasal Sea Water spray from the chemist (Not prescription). I might add that I have very bad brochiectasis. We are all different.
Hi Dernancourt and a very warm welcome, although I am sorry to hear of your health issues. Just wondering if you are from the USA as you speak of a physical therapist.
I am sorry your doctor is not as supportive as you deserve. To say he is not worried is less than helpful, it’s not him that is struggling.
We are all different and what suits one does not necessarily suit another, although it may well do so. I will put up a link for you which will explain just about all you need to know about bronchiectasis and what you can expect from your clinician and indeed what you can do for yourself.
Dip in and out as it is generally straight forward. However there are interviews between consultants which you might want to skip until later. We wanted them in as BE patients are so diverse and some want enough to get by and some want every research paper, most are I guess in between. It has videos of different methods of lung clearance and gadgets to aid but it would be helpful to ask your specialist, if you haven’t changed him by now to refer you for help with physiotherapy, although I guess that’s what the physical therapist should have done.
I'm from Australia.... but am also British. Lived in the UK 2000-2006....Greenwich. Dream of going back - just not now with COVID. Thankfully Australia is an island and we shut down the borders like the flick of a switch. The economy is toast though......
procedure likely will be similar in Oz as in UK. I referred a lot to the Australian and New Zealand Thoracic Society when I was first diagnose, before BLF forums had started, found the information there excellent. You probably already know of it:
Hello + welcome.the advice youve b given here so far is great.the active cycle of breathing(ACB) is crucial.i use disposble plsstic cups when clearing lungs so have clear picture of amount, colour and consistency - as these r the pointers to infection.i use "nappy bags" to dispose of cups.pneumonia takes quite a while to get over.yr doing well and walking,up hills too! Im quite clinical + pragmatic with myself +health.with bronchiectasis,we HAVE to take responsibility for our day to day care.i viewed being given a diagnosis as a gd thing - as knew what i was dealing with.id reiterate ask dr for carbocysteine,take painkillers if need them,try to expectorate mucous rather than swallow.
Hi... Yes it is a shock to the system to have a diagnosis of Bronchiectasis especially when you've never even heard of it!I was diagnosed 10yrs ago after widespread pneumonia & "it was a real struggle to begin with. No empathy or understanding from a consultant who said it wouldn't really impact on me.
How wrong he was!Had to give up teaching as I kept getting infections, until I was put on azithromycin 3x weekly. I cough up lots of mucous especially at night but it's important to clear your chest.
I take carbocisteine 2x2 daily & nebuliser 7%saline to loosen the mucous, as well as having ventolin & symbicort inhalers. As others have said you need to keep a rescue pack of antibiotics at home & "if you have an exacerbation put a sputum sample in to identify the bug.
It's a real pain at times but manageable & does get easier! Keep smiling! Good luck!
Me too ,took nearly 5 years to diagnose ,now go prophylactic azithromycin 3 times a week plus nebuliser saline and live a near to normal life good luck x
I have Asthma, COPD and Bronchiectasis. My consultant shows the most concern for the Bronch. He diagnosed it 5 years ago although, at the time, it didn't show up on the CT scan. A recent scan has shown it clearly, but that hasn't changed anything for me on a day to day basis.
Everyone else has mentioned the most important bits, but I'd like to add that my consultant is reluctant to prescribe Azithromycin as it may exacerbate my vertigo (I also have Menieres Disease) so from November to April I take a daily dose of Doxycycline.
I have gone through various stages of mucous production! In the early days I was bringing up loads of the stuff. Our daughter-in-law who is a physio showed me and my husband how to do the most effective postural drainage, which involved him going over my back with a cupped hand (I think they call it percussion - or something very similar). This worked a treat. Eventually, my infections were under control and the phlegm seemed to dry up so that the postural drainage wasn't producing anything and we stopped doing it. My consultant was happy with this as I was well at the time and free of infections for many months.
Then I started to need to shift the mucous roughly every third day. This went on for very many months. Then things changed slightly. I had always been bringing up coloured mucous and didn't really feel ill - just getting gradually more and more breathless- so a lovely infection crept up on me! I should have taken my antibiotics from my rescue pack sooner than I did so it took longer to clear. Having said that, Amoxycilin didn't shift it, Doxycycline was then prescribed after the results of the mucous sample came back, but that didn't shift it either. In the end Clarithromycin did the trick and I am currently feeling better than I have for the past five years!
The moral of this story is to take it seriously, don't ignore any gradual change in your condition and presume it is something you have to put up with as you may have a treatable infection, but then get on with life - and enjoy it - have some fun! Delegate some of the household tasks to your other half and your teenagers (good luck with that one, but worth a try! Lol!) and find ways of making life easier if you can. If you're having a bad day, just remember that tomorrow may well be better. Do what you can manage, not what you feel is expected of you. There is always another day!
All the best to you. Keep us posted with how you are gettting on. xx Moy
PS in the UK it is accepted practice to prescribe 2 weeks of antibiotics to Bronch patients instead of the usual 1 week.
Will give the percussion a try tonight. I am currently using "therabubble" which is basically a big cup with a huge straw in it. A very expensive big cup when you think what you get for the money!! I blow bubbles in it and I don't mind doing it while watching Youtube videos. Do this for like 20 minutes morning and 20 minutes evening. I manage to cough up something every few days and then feel great and my oximeter readings go from 95 to 97 immediately. I literally SEE the difference and also feel the difference. I have noticed the lung specialists don't give a toss about oximeter readings as if they are higher than 90 ... yep all good to them.Whereas to me the difference between 95 and 97 is massive. I feel normal at 97/98 and even 99. I feel tired and unwell at 95... I now know my readings before I even put it on my finger.
Off to the lung specialist (number 2) on Monday and thanks to this board I have a LOT to discuss. Thank-you so much for your message!!!!
It depends on the NTM as they are all different. Mine is very rare but thankfully the drugs are identical to the contagious TB disease drugs. Rifampicin, Ethanbutol and Isoniazid (spelling)? I am on them daily for six months. I have just passed the 2 months...
And so it goes.
I tell myself every morning. This is not terminal cancer. This is not a colostomy bag I am dealing with. Someone, somewhere has to be one of the 15:100,000 to get the NTM. I am probably the 1:1,000,000 that got the NTM I got... hence the medical students and monkey in a zoo... I want to start charging royalties.
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