Iv have only just discovered that I have bronchiectasis but apparently I have had it for 4 years. I was told that my left lung was damaged 4 years ago after several chest infections. Lately I have had 5 courses of antibiotics and 4 courses of steroids. I have also had an X-ray and a CT scan to be told both lungs are now damaged. The bottom of both lobes have collapsed . So now I have a nebuliser and I have 2.5 liquid Ventolins for my nebuliser. I am 62 and I have been a career for my husband for the last 24 years and now I feel like I need taking care of. Is their anyone else with similar problems ???
Bronchiectasis: Iv have only just... - Lung Conditions C...
Bronchiectasis
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Maureenclayton
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Hi Maureenclayton and good morning. You probably saw my reply to shonamackay. The most important thing at the moment is to make sure that the consultant whom you are waiting to see is a bronchiectasis specialist as general respiratory specialista don't know much about it but I'm afraid that they often pretend that they do.You can find one on the internet, usually at a big teaching hospital. Take the name to your GP and don't leave until you get the named referral. My main relationship is with my consultant and her secretary because 64 years of bronch has taught me that GPs are ignorant of it and they need the consultant to tell them how to treat you.
I am not a doctor so can't give medical advice but from my years of experience of bronch it seems that the treatment you are being given at the moment is more that given to COPD patients than bronchiectasis. Bronchiectasis treatment consists mainly of emptying the lungs of mucus very diligantly so as to prevent further damage due to infection and aggressive antibiotic treatment, given orally, by nebuliser or by IV.
treatment by nebulised dilaters is usually used for COPD to open the airways. The concentration in bronch is on getting down infection and keeping it down. Sometimes with the assistance of daily hand held inhalers.
The physio should be able to teach you to do a cycle of breathing to loosen the mucus and cough it up. You can also get mechanical 'flutter' devices which can make this easier.
You say that you have been told that this runs in families. Actually it doesn't usually but comes about because of a trauma to the lungs - badly treated infections, pneumonia. Having said that there is a genetic condition called A1A Antitrypsin deficiency. This is a missing enzyme which usually coats the lungs to protect them from the proteins which rush there to attack bacteria but also attack lung tissue. This can be a factor in speeding up the progression of COPD or in the development of bronchiectasis from lung infections. It would probably be a good idea to be tested. Some GPs can have this done but then you will need to be under the care of a centre which is studying it. You can also be tested at one of these centres. Again, they are at big teaching hospitals. The QE in Birmingham is one.
Bronchiectasis is all about getting control. Expert and accessible medical supervision and daily self management. It seems like a mountain to climb but once you get everything in place it is easier to live a normal life.
Good luck. There are several of us on here who have bronch and are happy to support you.
Maureenclayton in reply to
Thank you so very much for your advise, I have been referred to the QE at Gateshead not far from where I live. I don't know who I will be seeing yet but it's on the 5th October. I really am looking forward to seeing the physiotherapist as I feel like an elephant is sitting on my chest every single day and do require assistance with getting mucus up as much as possible, my GP just told me to cough as much as I can, but I doubt him very much as he also was treating me for anxiety when I knew I had the start of a really bad infection, you just know don' t you.? I should also mention that I have asthma but feel the asthma is the least of my worries now since my last chest infection went on for ten weeks, after five courses of antibiotics and four lots of steroids eventually they said my last mucus test was clear but not before it's now affected both lungs instead of just one which was damaged four years ago, all of a sudden my condition has got a lot worse. Never mind I'm just going to take each day one at a time and take advise from people like your self who are living with the condition. Thanks again.
in reply to Maureenclayton
I hope that you get to the bottom of it all when you see the consultant and get a plan for going forward. Unfortunately GPs can make things worse because they tend not to give the right antibiotic in the strong enough dose for long enough. I have never had steroids because my consultants have always said that they mask what is actually going on in bronch exacerbations. However, as you have asthma they may play a part in your treatment. When you see the consultant don't be afraid to ask them if they have expertise in bronchiectasis and if you aren't happy change to one who is. After all, you wouldn't see a knee specialist about a rotten tooth would you.
I'm afraid that we bronchs ( as with every other lung condition) have to be our own advocates and vociferous in getting the right treatment. Just when we would just like to curl up in a ball! x
Maureenclayton in reply to
Yes your right about not giving the correct antibiotics, even a different doctor at my own surgery wanted to know why I was put on the first antibiotic with my condition, obviously he didn't look at my records. Apart from the fact he treated me for anxiety first before giving any antibiotics at all delayed my recovery by weeks and I think this is why I'm in such a state now, the GP who did this phoned me and told me he was personally going to refer me to a physiotherapist, should have happened ages ago. I went on holiday with my husband a couple of weeks ago to Newquay with National holidays and spent almost the whole week in my room on nebuliser and couldn't wait to be home. I booked a holiday with my two grand daughters last year for October coming to go to Spain with my eldest daughter who has no children of her own but helps everybody including myself, I'm so worried I spoil there holiday as before I used to get involved with everything and now I feel like I'm holding everyone back. Do you think I will be ok to go if I don't have a chest infection at the time. Or what's your views on aeroplanes in general?
in reply to Maureenclayton
Yes, get the treatment of your exacerbations sorted out and a daily plan to take control and the world is your oyster. I travel all over the place, have lived abroad and am going on my second World Cruise after Christmas. You have just been messed about so much. The very fact that you have been resorting to your ventolin nebuliser when it is obviously doing nothing suggests to me that you need the basic problem of bronch addressed asap and properly. It is the infection which produces the mucus and makes you breathless. Only the correct antibiotic in the right dose for at least 14 days can begin to sort it out.
Your GP should have sent off sputum to find out which bug is in there. The lab will tell him which antibiotic it responds to. ( sometimes these tests come back negative when we know that there is something in there but we will go into that if and when). Treating you for anxiety when you were obviously presenting with a respiratory problem is a joke! 🤦♀️
in reply to Maureenclayton
forgot to say I fly when I have to ( I'm scared) I have never had a breathing problem. In fact, when it gets high enough the change in pressure loosens any gunk that is in there so after several sessions in the loos I arrive at my destination beautifully clear and breathing beautifully.
winter2013 in reply to
This is such a brilliant reply from littlepom Maureen that she sums most of what you need to know. She's certainly got heaps more knowledge than GPs and one of the most experienced on this site!
I like you am 62 and wasn't diagnosed till 58 but had it longer.. afew years. It's a long story but if you type in my name my story is there if you want to read it.
Since going to a consultant who specialises in bronchiectasis I've learnt so much more and was getting nowhere with the previous 2 respiratory consultants. Am still learning though and have just picked up something from this reply littlepom!
Seem to recall my consultant mentioning I was low in a protein which protected the lungs so maybe I have this A1A deficiency? Will ask next time I see my consultant.
Also think my bronchiectasis started as a result of repeated infections low down in my lungs. GP at the time said it was at the bottom of my lung each time. In retrospect I wouldn't have put up by being fobbed off with being told.... it was ME, asthma, dont worry about constant phlegm cough etc etc! Common story though unfortunately.
Anyway you've got to this site quite quickly, wished I had, and with all this advice you'll soon feel more in control. Agree .. knowledge is power!
😉 good luck ! X
Thanks for the support, it's good to know I'm not alone.
Just looked Maureen to see if my story is on my posts. It's not as such as you have to read through lots of replies, it comes up on chats which you won't want to do.. thought it was easy!!! Not that my story is that special anyway 😂!
Just the same age as you and struggled for a long time undiagnosed then when was diagnosed had 2 years having a dreadful time. Been a long emotional journey. Still learning but know much more now I think!!
To repeat do take littlepoms advice. Also I think it's sad that when we are at our most vulnerable and most in need of help , we have to be at our most strong when we least feel like it...coping with it and pushing for right advice!
But to end on a bright note... hopefully it'll make us all ultimately stronger people and I know without any doubt!! that those people who have had a tricky journey are usually the most empathetic people.
So we are all lovely on here aren't we ! 😂😊xx
I think everyone sounds great with a lot more knowledge than I realised even my own GPS lol. Thanks everyone for listening. X
sorry I see that your Father, not your Uncle, had bronch. 6% of the population are A1A deficient so if you prove positive the rest of your family should get tested so that they can take steps to protect their lungs. No smoking, immediate treatment of infections etc.
Maureenclayton in reply to
Thank you for advise, I have 4 children and 7 grandchildren and will advise them straight away. X
in reply to Maureenclayton
great. Knowledge is power! xx
Yes i have damage lung due to pneumonia about 10 month ago on nebs etc.
I too have bronchiectasis. I don't know how long I've had it but I've had it for quite some time I know that. Your story sounds very familiar! I have had the worst summer ever!! I also have gone through five courses of antibiotics until finally I said to my doctor let's take a sputum culture it revealed the right course of antibiotics. That was a very valuable lesson. So I would suggest next time you have a lung infection take a sputum culture in and have it analyzed. Taking antibiotics is the worst isn't it? Just make sure that you replace a good Flora that's been killed off because of those antibiotics. I know that I've been drinking kefir as well as I have been making homemade sauerkraut. It is loaded with good bacteria for your gut. As well as your whole body. I have no suggestions for you as to medication or anything like that. I am on 3 inhalers and nebulizers if I need it. It's a drag but we are still alive to see another day. Another sunrise and another sunset. Do take care and let everyone know how you're doing.
I am definitely going to ask about a machine to clear my lungs, I think that's my worst nightmare, my husband doesn't know how I'm surviving on very little sleep and I'm not sure either. He is the opposite and sleeps far to much with all his medication, he had a serious head injury when he worked on the oil Riggs and I've always been the one with loads of energy bringing up our 4 children then helping out a lot with 7 grandchildren, I'm feeling very low about the whole change of lifestyle. Like this morning I would normally have been up early and off to church, but I'm afraid that I've still got even a slight infection as I would hate to pass anything on to anyone of those lovely people who I sit next to on a Sunday, let alone have to rush out coughing and spluttering all over the place🤧
Sorry about that came off to quick, thanks for the advise about different Flora etc, as that's one thing I've completely overlooked being a definite lurpak 100 per cent
Butter eater, everything eater at the moment lol. I lost quite a bit of weight last year and felt a lot better but all the steroids has spoilt that in a
Very short time. I am going to try again when I'm not feeling as down as I am at the moment. Thanks for advise and god bless. Xx
Oh I'm in the same boat today I'm not going to church either! It's terrible isn't it? I think the machine is a little handheld thing that when you exhale it sort of rattles your chest. It's pretty gentle but it is effective if you use it on a regular basis. Do you ever have pain in your lungs? It's my right lung and sometimes I have pain in it. But you know what we carry on. I just say it's only my flesh and it doesn't affect my spirit.
One thing I'd like to mention. Try to avoid steroids at all costs. I say that because I was diagnosed 20 years ago with MS. They gave me so much steroids I ballooned up to 240 pounds! That was just unacceptable in my books. However after two years or three I came off of them. I told the doctor there's no way I'm going to take any more of those! However I went for a bone scan and my density had gone down 20%. I'm now have to live with osteoporosis as well yikes! So as I said I know that the steroids keep the inflammation down but you have to weigh it out for yourself. It all predisposes you to diabetes as well. It's an evil drug but it does have its good sides that's why I say you have to weigh it out. The doctors don't tell you. It's only after you've taken them and the effects start to happen like the bone density. Thank God I haven't been diagnosed with diabetes. I hope I don't sound like the bearer of bad news.
I've had loads of steroids lately and put a lot of weight on but at the time I couldn't care as long as this horrible weight would just lift of my chest and I could breath again. It went on for that long )ten weeks )that I thought my time had most definitely come and I was never going to recover, I better not speak to soon though, like I said didn't make it to church this morning through a cough that just came out of nowhere. Just wonder if I'm ever going to be able to lie down on my back or side to try to sleep again. Seems so long ago that I did. My daughter sometimes sleeps over now and again to keep my spirits up, we used to go running together, swimming, taking her sisters and brothers children to the beach and everything, now if I get down onto the beach I can't make it back off cos I'm out of breath, I think it's been a bigger shock to her than me, bless her. I think once I try this machine to get the mucus up I'll be a lot better. Hope so. Hope you feel better soon and I wish everyone well. Xxxx
Oh and by the way yes I get loads of pain in my chest, and even more when I take a deep
breath. Xx
Thank you again for replying but yeah I get really bad pains in my right lung especially today I had them really bad. It radiates up to my neck and I thinking I sure hope this isn't a heart attack but it's on my right side so I don't think it is ... or I wouldn't be writing this. God bless your daughter. I have two of them one could care less the other one I think is trying to make up for her older sister. She's absolutely wonderful she was just here a little while ago. I hate that diseases take things away from us. You must live near Brighton or someplace beautiful like that. I seen pictures I've never been there but I sure like to.
Oh Lindy-loo the photo on my profile is off when my eldest daughter and me went on a National holidays trip to Italy, the photo was taken coming back through the Swiss alps just in August gone, no I'm actually from County Durham, have you heard of our famous Beamish Museum? Well worth a trip to, I think it's the biggest anywhere. Well if you ever do consider let me know and we can meet up, even though it will probably take us all day to get round quarter of it with our problems lol. There's the old fashioned buses to get you round most of it. It's great especially in the good weather. Just reminds me when I was young, you know the old tin baths etc. Anyway thanks for your reply and I'm definitely looking into one of your devises for the mucus anything that will make life more comfortable. I'm pleased you have a daughter who helps you, everyone deserves someone. Take care both of you. X
Is the ventolin for asthma? I had just the most awful time until I was given a nebuliser so I could breath in a salt water solution called hypertonic saline and this clears the lungs if I use it with a flutter device. I also have asthma so I use my ventolin inhaler to open everything, then use the nebuliser to clear the lungs and then the flutter device and then use my purple round inhaler when everything is clear. It seems to be working. Since you already have the nebuliser you could ask for the hypertonic saline to use. I have had a horrid time... but now I feel well! I haven't had an infection since June and there is no monster in my chest grumbling and squeaking! For about 2 years I was only ever 3 weeks clear of massive infection! The way forward is lung clearance so that there is nothing there to get infected I think. I hope you feel better soon.
Wow good advice. I am going to use the hypertonic solution as well in my nebulizer. Thank you so much for that nugget.
Yay! Brilliant but use your blue inhaler first to open up the airways.... get hold of a flutter device too for afterwards. 😀
I wish I had one right now, but I will mention it to the doctor as soon as I can, or can you buy them over the counter I'm not sure.?
I think it's best you talk with your gp or consultant. Do you have a flutter device?
I'd never even heard of a flutter devise till yesterday, but hey I'm willing to try anything that will help me with this terrible weight of my chest. Just want to feel well again. Sorry not feeling sorry for myself just need advise. Thanks.
Ha ha you have a right to feel a bit sorry for yourself. It's not an easy disease
I have it (flutter-er). But here in Canada that saline solution is very pricey...$80. I am going to make my own. After all its salt and water. How they can charge a fancy price is beyond me! I need a recipe to see how much H20 and salt to use! Thanks for that info.
That's vet expensive! Have you looked in other places. I use the NHS in the UK so I don't have that problem. Terrible!
I so know that you are not feeling sorry for yourself! I have been where you are and it is horrid. I have a Pari O Pep device and it works..there are others.... talk with your gp, ask to be referred to a respiratory physiotherapist... you can also buy them online and they come with instructions. Ask for them... I didn't know they existed so I had to bang on so that they would help and it did take time... ask them. I can breath without my chest sounding like a grumbling, sqeaking dinosaur... and it it starts I blow on the pari thing! There is a way forward! 😀
I will get my daughters to look on line for one of these Pari O Pep devises for me as they never trust me to look for the right thing, I'm just not used to ordering from computers lol. I think I've been stuck here in the Middle Ages for that long now either looking after hubby or my mother for so long I'm a more than a bit lost off with the outside world. I'm also going to ask about the puffer and other devises while I'm on😏 well for once it wasn't my chest that kept me awake last night but one of my dogs, jealous I think, I've had my grand daughters little dog staying for a couple of nights and my dog has howled the house down, hope my new neighbours didn't here. Anyway the way forward sounds just where I would like to be. Thanks for the advise. Take care.
Bless that little dog! 🐶
If you're in the U.K and you can get your gp to get you to see a physiotherapist you may get one on the NHS.... if not your daughter will find it... it comes in a small red bag.
Good luck! 😀
Thanks so much 👌can't wait to get started with whatever I can to help. Haven't got appointment to see physiotherapist yet but will mention everything that's been advised. Will let you know as soon as I do, thanks again. Xx
Thank you, will let her know what to look out for. Cx
Brilliant.... Good luck.... the way forward! Can't wait to hear! Xx
Can't wait to tell you. Lol xxxx
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