Living with bronchiectasis

[Auntiesue82]

I have recently been diagnosed with bronchiectasis, I am the sort of person who works best with as much information as I can possibly get, I really would appreciate anything anyone can tell me, thanks

[Caspiana]

Hello Sue and welcome. There are quite a few members who have bronchiectasis here. I am sure you will hear from them. So glad you found us. Have a good evening. 🙋🐕

[Auntiesue82 in reply to Caspiana]

Thanks, so kind of you to reply, I hope you’re well

[Delamere in reply to Auntiesue82]

Welcome my best advice to you I'd buy a pair of big girl pants and prepare to pull them well up ! Joking apart you are your best form of defence don't be frightened to question everything push for appointments and information. If you have not already been referred to physio team ask to be they are a gold mine of information and have really kept me going. Good Luck x

[Auntiesue82 in reply to Delamere]

Thanks I don’t feel so alone, I have a respiratory physio, but not mastered expelling mucus

[Egpa in reply to Auntiesue82]

Try a Flutter or an AerobiKA to bring your muck up, you can get a Flutter from your doctors and an AerobiKA was given me by physio at the hospital. Best thing I ever did!!! Could not get on with the exercises on there own. Try taking saline before you do the exercises with them as this will loosen up the muck. Good luck.

[Auntiesue82 in reply to Egpa]

Thanks this is probably a silly question but what is saline please, I am new to all this, hope you are keeping well

[Egpa in reply to Auntiesue82]

Saline is in a neblit and you use it through a nebuliser. It's made up of salt and distilled water.

Neblets of saline used through a nebuliser.

[Auntiesue82 in reply to Egpa]

Thanks so much

[Egpa in reply to Auntiesue82]

Your welcome.

[Beth1949 in reply to Auntiesue82]

I live in the states and have Bronchiectasis. I use a nebulizer and a percussion vest to help bring up the mucus. A Flutter or an AerobicKA works as well as a vest. I developed Bx in my late 30s. I am now 72.

Has your specialist talked to you about why people develop Bx?

I was told that it was due to childhood illnesses, such as; whooping cough, mumps, measles, and chicken pox. As you age, some people develop Bx, and some don't, or have such a mild case, that they are not aware. I also think that events in your life can make a difference (in my early 20s, I worked in a sewing factory inhaling fabric fibers).

The difference between COPD and Bx, is that Bx includes the weakening of the major air ways determined by a CT Scan.

Environment and stress can make the symptoms worse. Since I retired, moved to an area with better air quality, and into a newly built house (no hidden mold) 5 yrs ago. I have felt so much better. I was even able to ween off of prednisone (which I had been taking for years).

Tips: Be proactive, talk to your specialist, check your environment, try to lower your stress level. Check out alternatives to prescribed meds (I take Turmeric w/pepper every day, due to it's anti-inflammatory properties).

Do you drink coffee? I do, but it's mostly decaf. But when I feel like I need to cough up mucus, I drink a cup of caffeine coffee, usually within a half hour, I can cough it up. Caffeine helped open the airways.

Hope this helps, you will get a lot of useful tips in this forum, Beth

[Auntiesue82 in reply to Beth1949]

Thanks, I did have phneumonia and chickenpox as a child and cancer in my forties, I had surgery radiotherapy and chemotherapy, so when I got flu I usually was really bad, I just thought I had a weak immune system, I am now 82 and not your usual 82, I am active and in between bouts really healthy but I was having bad bouts every month, couldn’t speak for coughing, low oxygen, and felt I was drowning in mucus that’s when they did the scan with dye and diagnosed bronchiectasis, I have had a great response from this site so now feel ready to go forward and live with it , thanks again

[B0xermad]

Hi,I downloaded some information from the NHS website on bronchiectasis when first diagnosed it was very informative and I agree with getting a physio nurse from respiratory department as they are so very helpful when needed.

[Auntiesue82 in reply to B0xermad]

Thanks, I feel so much better with all the responses

[Shimmysue]

Welcome Sue. I was diagnosed with Bronchiectasis 6 years ago and like you wanted to learn as much as possible about my condition. I had spent years with recurrent chest infections and productive cough and doctors just kept giving antibiotics and steroids. Took an admission to hospital with pneumonia to finally get a diagnosis. Get a referral to a bronchi specialist at the hospital, who should get you onto the right treatment plan to stabilise you. Combination of inhalers, azithromycin (long term antibiotics to prevent infection), carbosisteine for thinning mucous and chest clearance via breathing exercises taught by physios. Look up active cycle of breathing on YouTube and you’ll see the technique that physios will recommend. Physios referral is a must too as they will get you onto pulmonary rehab and lots of information. Gentle exercise and getting out of breath can help strengthen your lungs too, yoga and Pilates are great. Chest, Heart and Stroke Scotland have a great guide available for the condition too. Hope this helps! Susan

[Auntiesue82 in reply to Shimmysue]

Thanks that’s all so helpful

[johnderby]

Hello Sue, welcome to the forum. I don't have bronchiectasis but many do on here. I am sure that some of them will be along to talk about this with you. John 😀

[Debs_ALUK Partner British Lung Foundation]

Hello Auntiesue82

A warm welcome to the forum. We have some information available on our website on bronchiectasis and I have added a link for you below. If you would like to have a chat about your diagnosis to one of our nurses, do call us on 03000 030 555. We are here 9am-5pm Mon-Fri.

blf.org.uk/support-for-you/...

Take care

Debs

[Auntiesue82 in reply to Debs_ALUK]

Thanks I have made a note of the web site and phone number, I am overwhelmed by all my replies and replying to them but I would love to contact you in the future

[GintyFerguson]

Welcome Auntie Sue, Chest Heart and Stroke Scotland have a booklet namely 'Living with Bronchiectsis'. It is full of good info. Best I can say from my own experience, being diagnosed as an adult and after years of late onset asthma, is, don't panic. It is all about finding what works for you as an individual.

Personally I try to take as much exercise as I can and supplements such as Vit D, Zinc, fish oil and Vit C. I also have rescue antibiotics at home.

Two very important things I make a priority is to ensure lungs are kept as clear as possible and when I am ill get a sample into the doc for testing so the correct antibiotic can be prescribed. I start my rescue ones then the doc tells me if I need different. Good luck going forwards.

[Auntiesue82 in reply to GintyFerguson]

Thanks you made me feel I am on the right path, I also take the vitamins you mentioned and I have some antibiotics to take if I start coughing etc, I have some arthritis in my knees so before lunch I do my physio take blood pressure pill and try to expel mucus and walk briskly for 35 minutes ,luckily I live in a country village, trying to avoid hills, I also have low potassium, I sound like a wreak, but I am at the moment really well and keeping clear of people with colds and flu and obviously COVID, thanks for your input

[Mooka]

You’ve come to the right place then! There’s a wealth of experience and helpful tips on this forum. First make sure your respiratory consultant specialises in Bronchiectasis if they don’t get a referral to one. They should refer you to a physio who will help you with getting up the mucus. They should also write to your GP to let them know which rescue antibiotics to prescribe for you so you can start taking them without waiting for an appointment. You should also take a sputum sample to your GP so they can ensure you are on the right antibiotic. Being proactive should ensure you can live an almost normal life. Secondly come back here and ask any questions you can’t find an answer to.

[Lfcpremier]

Hi.. Has anyone mentioned carbocisteine capsules on prescription? 2 x2 daily to thin the mucous.? Good luck! X

[Auntiesue82 in reply to Lfcpremier]

Thanks I have written that down and I will phone my respiratory nurse and ask if that would help me,thanks again

[Auntiesue82 in reply to Lfcpremier]

I have organised a prescription for a low dose of carbocisteine so thanks again

[MoyB]

Hi! I have bronchiectasis alongside asthma and COPD.

Because of the number of exaccerbations I was having, my consultant was keen to start me on Azithromycin but as it can cause vertigo, and I was already having major problems with that due to having Menieres disease, he decided it would not be fair to prescribe it. Instead, he prescribed Doxycycline to be taken from November to April. I have done this for three years now.

I also take Carbosisteine to help thin the mucous.

I am on several inhalers, but I think they are for the asthma and COPD rather than the bronchiectasis.

Pulmonary rehab was a great help. There are online exercises that may help you with the lung clearance as the face to face PR is probably not running at the moment.

As someone else has mentioned, it's important to have a sputum sample tested if you suspect and infection. You should get this to your GP before you start your antibiotics if possible.

Your GP should always prescribe 2 weeks of antibiotics as 1 week is not enough for people with bronchiectasis. Some GPs need reminding of this!

You need to ask your GP for a rescue pack of antibiotics to keep at home so that you can start them asap when you suspect an infection. Although this is recognised as good practice, be aware that some GPs are still resistant and will not prescribe. You may need to insist!

There is also a wealth of information available through BLF including a good flow chart about flare ups which helps to decide if and when you should involve your GP or hospital.

When I was diagnosed, I read some misleading stuff online that suggested I would only last 5 years! I came on here and discovered many, many member who were well past their 'sell by' date! Some of them have had Bronchiectasis and/or other lung conditions for very many years and still live busy lives.

Best wishes, xx Moy

[Auntiesue82 in reply to MoyB]

Thanks for your input your reference to pulmonary rehab really interested me and I tried to find the exercises but failed, I do physio for arthritis in my knees, and walk briskly for 35 mins a day in fields and country lanes, I am really out of breath at the end but try to do a little further most days, this group is wonderful, helps a lot, and I can’t thank you all for all the help,best wishes auntiesue82

[asafoetida2020]

Hi AuntiesueThere is a lot of useful info about bronchiectasis in the 320 pages book 'Bronchiectasis: Taming It & Feeling Better a sufferer's success story' which is also available on Kindle. It includes the benefits of asafoetida vapour inhalations to help clear lung mucus; this technique is also helping improve my COVID symptoms and to keep my SATS at 97-99%.

It is good to learn that you want as much background knowledge as possible

[cofdrop-UK in reply to asafoetida2020]

I feel it would be helpful to auntysue if you had explained that you are the author of this book, which is not promoted by ELF as you stated on your profile.

[asafoetida2020 in reply to cofdrop-UK]

Dear cofdrop-UK,I appreciate the interest you took in my post, and its contents, to Auntiesue. As she wanted information about bronchiectasis I thought that the book I mentioned would be a good starter for her.

I should have informed her that donations to the Asthma UK & British Lung Foundation are made when copies of the book are ordered through the smile.amazon.co.uk as the nominated UK charity. If the ERS is involved with the smile.amazon purchasing scheme then donations can be made to them as an alternative charity,

If I had stated that I was the book's author then I am sure this would have fallen foul of the guidelines of the website; in the recent past another member's contributions, which were trying to help others, seems to have stirred up a hornet's nest to the extent that comments had to be suspended!

As I am currently self- isolating with Covid this will give me the opportunity to look at the contents of my profile to update things.

Best wishes

[cofdrop-UK in reply to asafoetida2020]

Hi, I don’t really see how you would be breaking guidelines as you have already stated you are the author in .your post, both here and on Bronc Support. As you say it would probably be helpful too to mention that 0.5% are donated to ELF.

I don’t see the comparison here to the situation with 2g,

I Have no doubt in my mind you are coming from a good place in wanting to share what is working well for you.

I do hope you recover soon fro covid.

Cx

[asafoetida2020 in reply to cofdrop-UK]

Hi again cofdrop,Thank you for your kind wishes for my recovery from Covid.

I did look through my correspondence with the ELF and I found a statement from them dated 17 February 2021 'we have agreed that we are happy to promote the book' - so there is no need to change my profile.

At that time it was decided that donations from book sales through smile.amazon could go to the ELF if that was the chosen charity. I think that clears up the other point

best wishes

[cofdrop-UK in reply to asafoetida2020]

I was informed to the contrary, so it looks in view of what you are saying that there has been a mis-communication within ELF. If you have it confirmed in writing then nobody can argue with that and it would clear up any misunderstanding.

Again I hope you feel better soon.

Cx

[Auntiesue82 in reply to asafoetida2020]

Thanks, what is the asafoetida vapour inhalation, I will look into the book you mentioned at Amazon tomorrow is it only in kindle format or is there a paperback, sorry must dash will get back to you

[asafoetida2020 in reply to Auntiesue82]

Hi Auntiesue,The book is in paperback as well as Kindle.

If you decide to purchase a copy you can so by using smile.amazon.co.uk and nominating either the European Lung Foundation or the Asthma UK & British Lung Foundation charity and either organisation will receive a donation. Alternatively, just get it through Amazon.

There is a chapter in the book about asafoetida oil and the method of inhaling its vapours is explained fully. I have found this an effective way of clearing mucus from my lungs due to my bronchiectasis and the covid 19 which I have at the moment. Done in the evening it helps my sleep pattern.

Good luck for the future

[Auntiesue82 in reply to asafoetida2020]

Thanks I have ordered the book and get it next week , it looks good, the reviews are good, will let you know when I get it, thanks

[asafoetida2020 in reply to Auntiesue82]

Any feedback will be welcome and I hope that you find it helpful

[cofdrop-UK]

Hi Auntiesue and welcome, although I am sorry you have been diagnosed with bronchiectasis.

Like many folks on here I have had bronch since babyhood.

You sound to have a very good attitude in wanting to find out all you can and are prepared to be proactive in your own treatment. I will put up a link from the European Respiratory Society, which I was fortunate enough to be involved for a couple of years. They update it constantly. Will out it on separately or I just know I will lose what I’ve already written.

Cx

europeanlunginfo.org/bronch... X

[Auntiesue82 in reply to cofdrop-UK]

Thanks I have had a quick look at that , it looks really interesting, I plan to look in more detail tomorrow, thanks again

[Auntiesue82 in reply to cofdrop-UK]

I have been on europeanlunginfo.org/bronchiectasis, what great info and videos thanks again

[cofdrop-UK in reply to Auntiesue82]

You’re welcome 🙂

[Metal-legs]

I've just recently been diagnosed with bronchiectasis too, I still can't pronounce it! Mine is caused by severe rheumatoid arthritis. I have been very poorly with infections all year,I am now on a twice daily nebulised gentamicin which is an antibiotic that goes directly to the lungs. The aerobika helps with clearing mucus but I found the mucus varies on a daily basis.Eucalyptus oil helps clear it too as well as drinking lots of sips of water throughout the day.

I feel for you, its wretched isn't it getting this diagnosis?Do hope you can find a way forward and you have an understanding lung nurse to ask questions to.

All the best on your bronchi journey xx

[Auntiesue82]

Thanks for your message, sorry you have been ill with so many infections, how do you use the eucalyptus oil, I am really amazed at all the messages in this group, they seem lovely helpful people, hope you feel better soon, take careBest wishes