Bronchiectasis-new

[Dawnsunny]

Hi, I'm newly diagnosed with Bronchiectasis after having asthma for most of my adult life. So I'm lost and just trying to gather info.

At the moment I'm sat at home and it feels like my chest is 'cold' internally .... anyone had this?

Thanks Dawn

[2greys]

There are a few "Bronch's" here and hopefully you will get an experienced reply soon.

[stone-UK]

Hi

Welcome, can't help with conditions, but some reading for the weekend.

I do know you have to the correct consultant who specialises in Bronchiectasis

bronchiectasishelp.org.uk./...

[Dawnsunny in reply to stone-UK]

Thank you I'll take a look now

[Hidden]

Hidden is one of the most knowledgeable members about bronchi so I have tagged her and I am sure she will come in with very good advice.

O2Trees is also very knowledgeable.

[Dawnsunny]

Thank you x

[veg58]

Hello, I have bronchiectasis having had asthma all my life. You probably already know that it refers to some dilated and damaged airways in the lung which are more predisposed to becoming infected. I think mine developed after a particularly nasty cold/chest infection. It was very depressing at first and I was always self conscious about coughing in public. Exercises and early management of infections is the key. The other point is that you can go for many months (even 18 months) without an infection so it is not all doom and gloom!

[Dawnsunny in reply to veg58]

Thank you veg58, what daily things do you do to help it?

Getting concerned that I won't be able to get past the Drs receptionist to get an appt as soon as I feel worse ! It's bad enough feeling scared without them almost telling you it's not a priority 😩

[veg58 in reply to Dawnsunny]

Hi. It depends on how I feel but I try to walk the dogs everyday and I ride my bike when weather permits. Next time you see your doctor ask about having " rescue antibiotics " so that you can treat yourself early. It is also useful to have a container and pathology test form so that you can have a sputum test before commencing the antibiotics. It is a bit of a learning curve.

[Dawnsunny in reply to veg58]

Great advice, im getting on to that as soon as I can thank you x

[Shirleyj]

I was in the same position as you, asthmatic then after pneumonia, diagnosed with bronchiectasis. I was relieved when they diagnosed it as my doctor just kept saying it's your asthma.

Have you been referred to a consultant. ? You should be given an emergency antibiotics to take when you feel an infection coming on. Try to keep your lungs as clear as you can, I invesTed in a flutter device which you blow in, it helps to dislodge the gunk on your chest. Keep as active as you can it will help you keep your lungs as clear as they can be.

As for doctors receptionists, some are nice, some are not, if you feel ill you are going to have to insist on an emergency appointment if necessary, but having the emergency antibiotics at home will help. Also ask doctor for some sputum pots so you can take a sample to hospital, so they know what bug is on your chest and will be treated with the correct antibiotic.

Hope this helps, there are some very articulate knowledgeable people on this forum that can help. Try not to worry, you've lived with asthma. You will do the same with bronciectasis. Take care x x x

[Dawnsunny in reply to Shirleyj]

Hi, thank you so much for your reply, it means so much to me to hear other stories.

I do have a consultant at Salford Toysk Hospital ( is anyone else under this hospital?)

I'm trying to make an appt at my GP but it's really bad to get an appt, she's saying end of Oct when I called yesterday which is no good if I need antibiotics 😩.

I did get some sputum pots from the physio when I last saw her, can I just walk into the hospital? I wouldn't know where to go and wouldn't I need some kind of form?

Did someone recommend the flutter? No one has mentioned them to me I've just seen them on another post.

I'm sure I'll get better at things as time goes on x

[Dawnsunny in reply to Dawnsunny]

Sorry that should say salford royal hosp

[Shirleyj in reply to Dawnsunny]

Sorry for late reply, when you get your sputum pots doctor should giveyou hospital form to take with you as well. I found out about The flutter device from this forum, read up on it and decided to get one, have been told since your doctor can prescribe them, but with all the cut backs going on, you might be better off buying one. I got mine from evergreen online, I think amazon might do them. Google and see what you think. X x

[Dawnsunny in reply to Shirleyj]

Thank you, I'll speak to my physio next time I see her x

[winter2013]

Hi Dawn

Yes there are some very experienced bronch sufferers on here.. littlepom, still standing....who've had it for years so know much more than me . I was diagnosed 3 years ago but I now know had it for much longer than that.

I think main advice is that you have to be persistent in getting the best advice from lots of sources and then see how to manage it best for you.

That may sound abit vague but briefly my story goes like this.

Had a GP who initially kept on saying I had asthma, it was only picked up by her sending me to an ENT for voice nodules as I was always coughing, getting a croaky voice. ENT spotted me coughing and sent me for a CT scan for throat and chest. Then results came back with a partially collapsed lung so was referred to a respiratory consultant.

Consultant diagnosed bronchiectasis. Kept on getting awful fatigue. GP said it was ME , sent me off to a consultant for that. Was constantly infected, all sorts of problems. Got in such a mess I saw another consultant briefly who wasn't much help.

As I also have asthma in desperation I phoned the asthma society who suggested I see another consultant as I was in such a mess. I did and am so glad I did. He said the original CT scan wasnt read correctly, changed antibiotics, offered lots of different advice. So!! glad I followed asthma nurses advice !

Also have seen 3 respiratory physios , all offering slightly different approaches but have now do a mixture of all which seems to work best for me.

So I think you need to feel confident with your consultant i.e. antibiotics that are prescribed and other medication are working or at least you understand what's meant to happen.

Feel happy with the Physio technique you're doing.

Learn to know when you're infected which can be tricky. I spent 18 months with green tasting phlegm and no one picked it up. It wasn't until I changed Physio, showed her photos I'd taken that she said it was infected!! How could I not have known I think now? Well I had a GP who said I was obsessed with my lungs and should instead on my ME.... which was dismissed when I saw ME consultant. He couldn't believe GP hadn't told me the bronchiectasis can make you feel tired. Anyway for first time in my life I changed GP!

New GP isn't very knowledgeable about bronchiectasis either ( as many in here agree!) but at least he's supportive!

I have rambled on Dawn and I hope not depressed you!! It is manageable but having as much knowledge as possible, accepting any possible adaptations you may have to make and then " getting on with it."

I'm still learning about it all and don't have all the answers at all... but every time I have put a post on here , people have been so kind with their replies. So don't feel alone and " post away!"

😉 good luck. Xxx

[Dawnsunny in reply to winter2013]

Hi Winter you haven't rambled I've really enjoyed reading your post as it's helped me realise my symptoms are not in my head, I've posted a longer post further down xx

[lKeith]

Dawnsunny

Welcome, there are numerous people on this forum who have been diagnosed as you. You need not feel alone, share your problems and people here have probably been there and done it all before, simply take note.

IKeith

[Dawnsunny]

Thank you so much guys!!

It really does help to read these posts!

I can so relate to so many things.

Re the croaky voice, I've had this for some time and I too put it down to cough/inhalers. However my consultant sent me to ENT to have it looked at. This was Monday, he found I had a cyst on my voicebox and before I knew it I'm sent down to pre op and swabs, ECG, lung function, bloods etc and op booked in for week on Wednesday! So scared. Just getting my head round Bronchiactasis and now this!

Food sticking I can also relate to and this has happened to me on and off for years, when it first happened and I went in for tests I was told it could be allergies where it caused my oesophagous to close and as only a few people had it there was nothing to treat it with, do just put up with it!

I also have been having a really cold feeling in my chest, front and back at times and have to sit with hot water bottle on it.

How much exercise do you all do?

Like you I've had asthma since I was 21, I'm 56 as of yesterday ( wasn't a great day) and I've had infections that just didn't shift so antibiotics and steroids were given all the time until I was really ill at Xmas with a virus that kept me to my bed and I was very weirdly confused and rambled but coughing up blood so he then referred me to the consultants.

CT scan confirmed Bronchiectasis. Although I'm thinking I've had this longer than my recent diagnosis.

I'm on tabs to thin the mucus 2 three times a day and under physio, I've been referred to the gym for a 6 week programme and I try to drink plenty of water and brisk walk for 20 mins when I can.

I find the breathing and huff confusing and not sure what I'm doing.

So happy to have found you guys to help me as I find my feet with this x

[winter2013 in reply to Dawnsunny]

Good luck for a week on Wednesday Dawn.. let us know how you get on.

Re how much exercise, I think it's a personal thing according to what you can manage, suits you and you like. Personally I do just like gentle walks and when I've told consultants and physios that they seem happy. In fact the last Physio said its important to exercise but not overdo it and tire yourself out more.

Re coughing, huffing... have found that difficult as all 3 consultants sent me to different physios. I think (?) I say cautiously, that I may have been previously overdoing it all and making upper airways inflamed. So I am now more gentle. In fact, someone (Stone who often posts useful links) posted a clip from a respiratory Physio with a patient at hospital. I was surprised at how gentle she was telling the patient to be!

If Stone, if it was him, is reading this , perhaps he can repost the clip?

Xx

[Dawnsunny in reply to winter2013]

O yes please, as I'm so unsure ... really don't want to make anything worse 😫

[Salks in reply to winter2013]

I agree I overdid it to start with and it seemed to cause more inflammation and more mucus so I do it more gently now and I feel much better

[winter2013]

Just read this earlier reply you put on Dawn.

Re sputum pots they should have some at the health centre but not easy with an unhelpful receptionist! Perhaps you could say your consultant has told you to ask for them?

Anyway when you get the pots, if you need to hand in a sample... again you need to find out from the unpleasant receptionist what time the collections are. Mine are twice a day as best to get it sent off asap.

Re the flutter or acapello devices. I know lots of people find them helpful. They are devices you breathe into to help loosen phlegm before you guff. For me I didn't get on with them and prefer to do Physio without, but think am perhaps unusual? X

[Dawnsunny in reply to winter2013]

Do you find laughing a problem, if I try to belly laugh it's always cut short and coughing starts it's soooo annoying! 🙄

[winter2013 in reply to Dawnsunny]

This sounds so sad and " not how we are meant to be!"... but reading that made me realise I don't laugh enough to know 🙁! What with avoiding viruses ( had a lot of infections from catching viruses), do have fatigue issues, getting too involved with various family problems etc etc... think I need to add " to laugh more" on my list 😂!! Then will let you know!! 😂

[Dawnsunny]

Sorry another thing, I've found concentration really poor, I'm struggling at work to remember things , I know age is a factor too but this is worse and I'm finding it frustrating x

[winter2013 in reply to Dawnsunny]

Well I was diagnosed at 59 so was lucky enough to retire then. Was self Would have found it hard to cope whilst working as just before I retired I was struggling and missing so much. Personal comment ..but have been getting awful menopause symptoms for 8 years, still ongoing. My husbands convinced this hasn't helped bronchiectasis. Mention this as there are known links with menopause and concentration .. this may not apply to you though!! X

[winter2013]

Have just found the link.. don't know how to put it on here but it's:

bronchiectasishelp.org.uk

[winter2013 in reply to winter2013]

Sorry after the ... uk.. there's a ./

[Dawnsunny]

Thank you Winter, I am going through the menopause having massive hot sweats too! The carbahistine tabs (think that's what they are called) I'm on also says it will cause concentration probs, so I've got no chance then! Lol

Awww I know what you mean, laughing isn't a daily thing and def hasn't been for the past few months but when it does happen my cough spoils it! 😫

Thank you will take a look x

[Hidden]

Hi Dawnsunny, gosh, I go away for 24 hrs and what do I come back to? A new member of the forum, just diagnosed with bronchiectasis, all at sea and frightened to death as to how to proceed.

you have had some lovely advice from the others but I think that it is time that we unwound it all, start at the beginning and try to give you a plan and some comfort and confidence.

I have had extensive bronch since I was 3. I am now 67. I now combine bronch with two heart conditions and I am still giving it plenty.

First of all. Once you get to know how bronchiectasis affects your body you will learn how to control it and most of all, to get the proper treatment from your medic. This includes putting your foot down with the horrible receptionist.

Your best ally in this should be your consultant. A general respiratory consultant won't do. You need to check that the consultant whom you are under is a bronchiectasis specialist. I'm afraid that many respiratory consultants and most GPs are woefully ignorant about bronch. If you do not have a bronch specialist, find one in your area on the internet. They are usually based at big teaching hospitals. Go to your GP with the name and do not leave until they have referred you. A bronchiectasis specialist will decide which way to go with the different forms of antibiotic therapy and whether to give you steroids. Unlike most COPD patients, bronchs don't tend to take steroids but as you have an element of asthma, you may need them.

If your present consultant is a bronch specialist you are half way there. Get in touch of with their secretary and tell them that you need the consultant to inform your GP that you should have an emergency supply of the most appropriate antibiotic for you to keep at home and on repeat to replace it when you have had to use it. Most GPs prescribe a fairly low dose for one week. Bronchs need a suitably high dose for at least 14 days. This is why the consultant needs to tell them how to treat you. The consultant should also inform the GP that they should educate their receptionist to give you emergency or telephone appointments when you ring to say that you have an exacerbation. They should also give you a supply of sputum pots and make sure that they send them off for you when you bring them in. A word of caution here. These tests can often come back negative when you know by what you are coughing up and how you feel that you have an exacerbation. This is where you take charge, listen to your own body and insist on getting the abs.

Now, for yourself. The most important thing is to empty your lungs every day.

Bronchiectasis is a tricky and complex beast. It changes its nature all the time and we are all different. Try to get into a routine where you empty your lungs two or three times each day at the same time. Also time this around going out so that you can be comfortable wherever you are. If it is going through a sticky phase a flutter device or an aerosure medic device should help. I hope that the hospital have put you in the charge of a physio because it is important that you learn the cycle of breathing that helps to loosen the mucus and expel it. I have never found that carbocysteine did anything for me.

As for exercise, you do what you want, depending on how you feel in yourself. With bronchiectasis it is important to use your lung tissue and so anything which makes you a bit puffed is good. It also helps to loosen the mucus. I have done everything, swimming, pilates, yoga, keep fit. I am a lazy soul and actually find that walking the dog works just as well. Be kind to yourself when you have an exacerbation but try to move about the house or have a walk around the garden and be even more fastidious in emptying your lungs.

Eating well, drinking plenty, staying away from other people's germs and smoke are obvious.

Most bronchs have learned that we have to be very proactive and vociferous in obtaining the correct treatment.

You are probably finding it difficult to concentrate because you are worried and maybe a bit of the menopause. I am well through that, still sometimes find it difficult to concentrate - it is usually because I am bored with what I am doing!

Well I'm going to stop there for now because I have thrown a lot at you.

You can lead a normal life with bronchiectasis as long as you are the boss.

I hope that helped a bit.

[Oliver1954 in reply to Hidden]

Hi littleprom I have Traction Bronchiectasis is this the same as Bronchiectasis ?

I have PF & CHP as well.

[Hidden in reply to Oliver1954]

Hello Oliver,

I do not know what traction bronchiectasis is. The damage in bronch is different with everybody and specialists have their own way of describing the particular form that they are dealing with. I don't know what CHP is either. your particular damage could have come about as a result of that or your PF.

Over the last few years my specialist has taken to describing mine as cystic bronchiectasis.

This is why we need very experienced experts to care for us and devise our particular treatment.We do have in common that we should work very hard to get the mucus out of our lungs and have the right antibiotic therapy in a high enough dose for at least two weeks at hand for the onset of exacerbations. Preventing further damage is crucial.

I hope that helped a bit.

[Oliver1954 in reply to Hidden]

Tks a million for reply.

Think the bronchiectasis has been since child hood very chesty went to an open air school for a time. (Later classed as asthmatic ) then thyroid op.

Roll on 40 years (CHP (Chronic HypersensitivityPneumonitis)

Which is a cause of the PF.

Diagnosed with all in Sept 17, after xray & CT scan reading all I can as the more informed I am when seeing consultant feels like hold some control over all. And go prepared with a list of questions. (aim for 5 answers)Interesting

Interesting what yours is called. i have been warned have the jabs. Keep away from infected folks.

Do your emergency AB change or is it the same one and dose each time?

I will try out your exercises you mentioned in another post or buy a flutter.

Regards

[Hidden in reply to Oliver1954]

My abs and their delivery system have changed many times since I was started on nasty old chloramycetin in 1956 and adapt as I go on. I have been colonised with pseudomonas since 1986 so take 14 days ciproxen 750mg bd when I get an exacerbation. When I caught community aquired pneumonia two years ago and my GPs messed me about I ended up on six weeks of IV tazocin then meropenem in hospital and at home. I now have an arrangement between my specialist at the QE in Bham and a consultant at the local hospital to give me IV if I I get an exacerbation and find that the cipro is ineffective .

How awful that you were misdiagnosed for so many years. I hear this over and over again. It does sound as if your problems of CHP and PF caused the damage that is bronchiectasis. At least now you know what you are dealing with and can set about being the boss.

[Oliver1954 in reply to Hidden]

Wow you must have amazing will power to come through so much.

For so many years just took at face value what was told to me by the doctors never questioned.

I am finding on this site the information, advice, just brilliant, also more often then not I come across someone who has more to worry about then me.

Had a bronchoscopy last week for biopsies and cells wash out to see which cells are greatest PF or CHP. then treatment plan will be done.

Given antibiotics to side step pneumonia, (after 24 hrs as temp & coughing up.) Plan worked to far.

I feel the bronchiectas is the one I have to keep at bay, to stop more lung damage.

Thank you again 4 your story all helps.

[Hidden in reply to Oliver1954]

I have just done a little reading and discovered that traction bronchiectasis is the damage to tissue and airways ( a feature of bronch) within an area of PF.

[Oliver1954 in reply to Hidden]

Its funny you should say that I recently got to see results of an xray from 2014. It made a comment to upper lobes, two weeks ago I asked my now consultant what that meant, and he said scarring . At the time gp told me all ok, just proves to me how we need specialist to deal with our lung and thyroid diseases most GPS seem to be out of their depth.

[Hidden in reply to Oliver1954]

Yes I'm afraid that they are but too few will admit it. knowledge is power! With A good specialist consultant, the knowledge of how to manage your conditions yourself on a daily basis and the help and support of the many lovely , experienced and knowlegable folk on here and you are well on your way to leading a fulfilling life.

[Oliver1954 in reply to Hidden]

Thank you so much for your positive info.

Take care.

[Dawnsunny]

Wow, thank you yes that's been really good advice and just enough to be getting of the starting block.

I'm trying to get in to see the dr at the mo, they are telling me end of October I don't have infection but am going to speak to him about plans that suit.

I'll look in the internet and check if my dr is a specialist, I think I'm seeing his ?registrar , not the main man, as he had to go and check with the main man when checking if I needed a CT scan.

I'm out brisk walking without too much effort so that's ok and drinking plenty of water.

I do find the breathing and huffing cycles confusing, not sure how long to do what!

Your message gives me something to refer to and I really thank you for taking the time to write it.

I'm sure there will be lots more questions from now on !! 😬

[Hidden in reply to Dawnsunny]

you do seem to be doing a lot of the right things and with a go to attitude. Bravo.

When I go to clinic I ask the nurses very nicely but firmly to put my file on the pile of the main woman( in my case). I am not attending to educate registrars. Neither are you. I have never been refused. It might be ' the look' which I'm sure you can cultivate.

I have developed my own cycle of breathing but you can find it on You Tube. Basically you take a large slow breath and hold it for 5-10 seconds as is comfortable for you.Then breathe out slowly right to the bottom. Don't cough. Do this 4-5 times more. Then when you breathe out on the next breath put your hands on either side of your chest. When you are reaching the end of breathing out squeeze gently and shake your chest with your hands. It should feel like a vibration. Then you should be able to cough some mucus up. Keep doing this cycle as many times as you need it.As you repeat it it should become easier to get the mucus out. Take your time, rest between cycles if you need to and keep a glass of water by you so that you can have sips between cycles.

Good luck.

[Dawnsunny in reply to Hidden]

Thank you so much will have a look, not been told about the shaking bit but makes sense x

[Jacmidlands]

I have abpa and localised bronchiectasis and I've got to say that life goes on! I'm lucky that I have an excellent consultant at The Brompton who is a bronch specialist. My advice is:

Take as much exercise as you can, a Fitbit encourages me to walk 8000 steps a day but it's gentle exercise.

Make sure you have antibiotics ready in case of an exacerbation, though I haven't had an infection for three years. Some people need low dose antibiotics every day but it shouldn't come to that yet.

Clear your lungs of mucus every day by whatever method suits you best.

Someone put this link on here a few weeks ago which I found useful though it does need updating.

chss.org.uk/documents/2013/...

Good luck!

[Dawnsunny in reply to Jacmidlands]

Thank you I've read through it all, feeling more positive, everyone has been so helpful and it's beginning to sink in! 😀

[notmoreABX]

Hi Dawn, I was diagnosed with Bronchiectasis in November 2015. At first, I was really shocked because I have always exercised, never smoked and only had mild asthma but did have a severe chest infection as a child. At first, it was really tricky and quite depressing because I didn't like having a 'chronic condition' and whilst the GP was as helpful as they could be, infections were missed, and I felt like I was getting worse and losing control of my own body. But after 18 months of infections and lots of oral antibiotics, I eventually got referred to a consultant who specialised in bronchiectasis, this revolutionised my management. I learnt to believe in myself - when I start to get symptoms of an exacerbation, I get a sputum sample off to the GP and start taking antibiotics straight away - I use to wait until sputum cultures came back and then only start antibiotics if there was a definite infection and then often 2 weeks weren't enough because I had let the infection a hold. So try and speak to a specialist, be guided by your GP but also do your own research and trust your body, take the antibiotics sooner rather than later (sometimes culture is negative but the sample might not have been sent in a timely manner or the sample came from a non- infective part (my bronchiectasis is just in certain areas of the lung) and do as much exercise and chest clearance as you can fit into your daily routine. I do hope this helps but I am sure you have had lots of replies.

[Hidden in reply to notmoreABX]

How lovely to read a positive story.

[notmoreABX]

Oh, and I got to reiterate what others have said - ask for emergency supplies of antibiotics - this is where the sputum samples come in handy - a pattern can be built up providing knowledge as to what antibiotic is likely to most beneficial for you and your history - the GP will appreciate this as it will keep you away from his door. And on the positive - I love the fact that I have plenty of good reasons to indulge in running, cycling and pilates even though I work almost full time.