Advice welcome

[Limpet72]

My husband developed bronchiectasis a few years ago, although he didn't know it then. It was diagnosed last year. He tried medication but that didn't agree with him. He is starting to walk more after lengthy treatment for leukaemia. Has anyone out there any advice as to how to manage this sometimes debilitating condition? Thank you in advance

[peege]

Hi, unfortunately our expert member who's helped so many on all aspects of bronchiectasis has left.If you put bronchiectasis in the search bar you'll find lots of posts & discussions about it. Her posts and replies will be named 'hidden (which j6st mean she's not a member at the moment ).

All the best to you and your husband. P

[Limpet72 in reply to peege]

Thank you P

[Jk1957 in reply to peege]

Hi Peege .

I presume you mean Littlepom. She has been my anchor for years & I really miss her posts . I have learned so much from her. I hope she is ok & hope she will return to us soon. If you have any private way of contacting her please give her my kindest regards & thanks for all her guidance & knowledge .

Jk1957

[peege in reply to Jk1957]

I wholeheartedly agree Jk1957. Unfortunately I don't have any contact details 😪

[Patk1 in reply to Jk1957]

Let's hope whn her anxiety improves,she will return as she has before

[sassy59]

Just want to wish you and your husband well. Good wishes to you both. Xxx

[Limpet72 in reply to sassy59]

Thank you Sassy

[Nula2]

🙋‍♀️Hi Limpet and welcome to this lovely forum which is full of friendly, supportive and fun members. I have Bronchiectasis (as well as other lung and non-lung related conditions). My advice would be to ask to be referred to a Bronchiectasis specialist as they are the experts in Bronch. A specialist will also (hopefully) refer your husband to a respiratory physio who can help with breathing techniques etc. They might also prescribe mucus thinners which help shift mucus from lungs. It's also a lot about self help. This has been my experience anyway. I'm sure there will be others who will add more tips and support. xxxx

[Limpet72 in reply to Nula2]

Thank you for replying Nula. Because my husband has been undergoing chemo treatment, the mucus thinner meds didn't suit. He uses the breathing techniques which help sometimes. I was wondering if a nebuliser would help or even a salt pipe, or if there was a type of massage that might help. Totally with you on the self help. The staff at the hospital have been great.

[Patk1 in reply to Limpet72]

Great advice from Nula2. Id definitely ask gp for respiratory physio referral - they'll teach him how to manage mucous & decide if a saline nebuliser will help him.he can request frm gp or physio,a flutter device called Aerobika.its great helping to get it up.read up,meanwhile,on aluk website,on lung clearance techniques- huffing technique + acbt. It's one of the most important aspects of self care with bronchiectasis to dedicated time to get it up.i use disposable cups and dispose of by putting tissues in and use nappy bags.hubby must be exhausted.it will help him to drink plentynof fluids and exercise within his limitations.any questions,do ask.someones always around xxx

[Limpet72 in reply to Patk1]

Thank you so much Patk. We have lots to go on here.

[Patk1 in reply to Limpet72]

Yes,it's enough for now. U must both be so relieved that the leukaemia treatment is finished xxx

[Patk1 in reply to Limpet72]

I also do gentle taps around lungs and chest area,which helps( percussion) & also do postural drainage ( side to side,lying down).

[Nula2 in reply to Limpet72]

Hi Limpet, yes I have a nebuliser which really does help. I get the nebules (the salt solution that goes in the tube) on prescription and have just bought a machine on Amazon as hospital only loan theirs to you for a couple of months to try - then you buy your own. The staff at my hospital (& GP surgery) are great too. I also sleep with a salt lamp on next to my bed😊 xxx

[Limpet72 in reply to Nula2]

That sounds like a great idea, I'll get one

[Nula2 in reply to Limpet72]

Hi Limpet, the salt lamps give off a nice glow too, I got mine on Amazon. I think for the Nebuliser you need to speak to the specialist or Resp Physio to make sure it's right for hubby - and if so they will ask GP to prescribe the Nebules that go inside to make sure you're getting the right ones and show you how to use it (that's been my experience anyway). Take care both of you 😊xxx (PS like Ginty I don't eat dairy products because for me they make the mucus far worse)

[GintyFerguson]

Welcome! Firstly I'd say educate yourselves through reputable sites such as Asthma and Lung UK and Chest Heart and Stroke . Secondly, everyone is different and some people have had bronchiectasis all their lives and others developed it in later life. I'm in the latter category following years of asthma also developed later in life. You have been given lots of advice from others which I really can't add to except to say it takes time to find what works best . I do take supplements such as zinc and vit D . If your husband can't tolerate the mucus thinners then there us something called a flutter device an nhs physio gave me which loosens the mucus . Dairy products contribute to mucus and I avoid those.

Good luck to your husband. Thete is much to be learned here and another site called Bronchiectasis R US.

[Limpet72 in reply to GintyFerguson]

I'm touched by how kind and helpful everyone has been on this forum Ginty. Lots of helpful advice.

[GintyFerguson in reply to Limpet72]

I'm glad that's your experience. We are all in the same boat I guess and understand how frustrating and stressful lung disease can be. For sufferers and their families. Take care.

[LissacFrance]

Hi, You don`t say what the medication was. My wife has had bronchiectasis most of her life, but it was only about 6 years ago she got confirmation about it instead of being told it was asthma, COPD and all the other things. She has Azithromycin 3x per week along with physio 3x per week. The Azithro acts not onl as an antibiotic but also an antiinflammatory. She aims to take 10, 000 steps per day as well as playing 30 mins of table tennis. Exercise to make your lungs work is the best treatment to help loosen the muck that collects at the bottom of the lungs. As to any connection with leukemia and drug interaction only your consultant can tell you. Best of luck, Chris.

[MoyB]

I was diagnosed with bronchiectasis 10 years ago and, at the time, I was really unwell with it. I kept going to my GP who prescribed antibiotics again and again. I could no longer live my normal life as my breathing was so bad.

He was reluctant to refer me to a consultant until I insisted and said I would pay to go private.

The consultant I saw two weeks later immediately moved me to his NHS list and ordered a chest x ray and CT scan. Bronchiectasis was confirmed.

At that point in time, I could hardly walk more than a few steps at a time due to breathlessness. I've had better times and bad times with a few hospital admissions.

But for the past 14 months, I have had some medication changes that have transformed my life!

I take a lot of pills for various things but at last I have my life back, and that is what I want to share with you!

I am currently living a busy, normal life again, doing things I haven't done for years. I still get breathless going up slopes but at least I CAN get up them again now.

What I'm trying to say is that my bronchiectasis has improved tremendously and now I hardly know I have it. It took a long time to get the meds right due to interactions with some I take for other conditions and also the need to avoid some side effects.

When the going was tough, I thought life as I knew it was over, but it wasn't!

Please remember when your husband is feeling unwell with it that there is hope that things can get better.

Try and get him referred to the community RESP team and ask about pulmonary rehab. They are sometimes able to help do the exercises at home if you can't get to a group, but the group experience can be great and offers good support.

Best wishes to you both.

Xx Moy

[Lutontown]

I have bi-basal bronchiectasis, which I developed after a long bout (30 weeks) of infection by a bug, Staphylloccus Aureus which resisted oral antibiotics. An intravenous AB sorted it after a CT scan showed I then had the bronch., but one week later, got a simple bug which was killed off with an oral AB. This was at a time when I was getting one infection after another. In 2017, I kept a diary, and counted 18 infections in that year. In Apr 2018, Black Mould was found in our bathroom, and since eradication of that, I've had no chest infections; although I did have pneumonia and pleurisy in Nov 2019, and a 10 day stint in dock. We moved into our present home in Aug 2013, and I think that maybe our previous home may have had black mould as well, as the lady of the family who bought it from us, died of a fungal lung disease. I also had a lot of chest infections whilst living there, including a bout of pneumonia just at the time of moving.

[Izb1]

You could give the helpline a ring number above 0300 222 5800 x

[Afibflipper]

my son has Bronchiectasis (since age 14 - now 29) he has a constant pain in his chest and lost of mucus - refuses to constantly take antibiotics as he worried about getting immune to them. He does however maintain physical fitness so your husband should build up to his best. My son takes multivitamins & minerals, also high vitamin C with zinc as they’re supposed to build up the immune system. If your husband has low immunity perhaps refrain from very crowded places particularly in winter - some people do still wear masks. Keep flu & covid boosters up to take and do deep breathing cough exercises to remove as much mucus from the lungs - it sits in the lungs harbouring bacteria’s which cause further infection to breed. With Bronchiectasis it’s particularly hard for the lungs to to get rid of this mucus - your gp may recommend carbosistiene to loosen it making it a bit easier. If he’s not Leeds under respiratory consultant maybe ask for referral. Hope this helps

[Patk1 in reply to Afibflipper]

Great adviceAfibflipper - love Yr name.I imagine u have had many worries over the years 💕

I take supplements too.hope Yr son is keeping well.sounds like he's doing all he can to keep well.i still use a mask if I feel need to + if family come,ill put my air purifier on.

I also use vicks rescue nasal spray+coldzyme throat spray to trap viral particles,when I feel I need extra protection x

[Limpet72 in reply to Afibflipper]

Hi Afibflipper, we tried the carbosistiene, but found it made him nauseous. He was an a raft of meds with chemo, so when everything calms down I might suggest we retry. Thank you. Lots of helpful advice.

[Afibflipper in reply to Limpet72]

My son thinks he’s invincible-has autism and is very fit goes to the gym daily - even when he has a chest infection he won’t see the dr - just says he’ll be fine soon !!!!! I’ve explained the error of his ways but he heard about people becoming immune to antibiotics and basically refuses so I just have to take a back seat for now. There is a thing that has a heavy ball in it, you blow into the tube and as the ball rattles in the pipe it shakes the upper body and thus loosens the mucus (like self physio) - if I remember the name I’ll let you know

[LissacFrance in reply to Afibflipper]

Re antibiotics: is he taking Azithromycin? My wife takes this 3x per week and has done for last 4 years. Really does make a big difference. Best wishes, Chris.

[Limpet72 in reply to LissacFrance]

No he's not Chris. I'll look into it. Thanks, Celia.

[LissacFrance in reply to Limpet72]

Azithro also works as an antiinflammatory which is the important part of the medication as far as Bronchiectasis goes. Good to see that he goes to the gym. Exercise is most important.

[Afibflipper in reply to LissacFrance]

No, he was supposed to take Clarythromycin daily which he did for the first few years, then typical teenager either forgot or couldn’t t be bothered. He does have autism also and so now at 29 thinks he knows best, goes to the gym daily and to be fair is very very fit (I’ll bear that medication in mind though thank you 😊

[Alberta56]

Your husband is doing the right thing by starting to walk. Exercise is so important to us bronchs. I can only agree that it would be good if the doctor referred him for pulmonary rehab- the team will help him get his body into better shape (gently). I found my AeroBika extremely effective for getting mucus up. GPs can prescribe them. Loads of good advice here and on the AsthmaLung web site. Welcome to the forum. I hope your husband will soon be making progress. x

[Afibflipper]

I’m by no means advising anyone medically here and say do check with your Drs first but, take a look at this device- it’s on Amazon & it is like self physio to help loosen secretions by vibration & also a breathing exercise - shape like a pipe with a ball in the end

Mucus Relief Cleanser & Lung Expansion Device by (other brands available ) - Breathing Exerciser for Better Fitness & Sleep - Perfect Treatment Aid for COPD, Asthma, Bronchitis & Cystic Fibrosis - OPEP Flutter Machine

Again please check with your medics before getting it (I’m not medically advising here) just hope it helps