Bronchiectasis, my recent CT scan with injected dye to give enhanced contrast has shown a worsening of the condition.

[Plantation-nut]

I've got an appmt to see the consultant soon. I don't have any days free from coughing or production of mucous. I take acetylcysteine daily with fluticasone and Ventolin daily. I've seen a respiratory physio and do lung clearance daily. Does anyone have any experience of this or advice? Fear of the future is beginning to creep into my thoughts.

[islande]

I'm so sorry you feel so breathless.its really horrible and scary.dont have any experience though.go see your gp if it continues for more than 2 days I was told that at pulmary rehab.

[Plantation-nut in reply to islande]

Thanks for the advice and reply. The fear stems from a childhood of struggling for breath in the days before Ventolin. I know the medical help has advanced leaps and bounds since then so I can take comfort from that when the fear tries to dominate my thoughts.. Thanks again

[Patk1]

If yr coughing more,I'd up yr lung clearance to twice a day."worsening" may not mean " much worse".do u have many exacerbations/ infections? I use viiral blockers - vicks rescue+ coldzyme, to try to avoid viruses which trigger flare ups and an air purifier if have visitors, for same reasonMany of us are on ,mainly azithromycin, as an anti inflammatory prophylactic antibiotic - u could ask about it.

[Plantation-nut in reply to Patk1]

Thanks for the advice, I've had several infections since my previous ct scan. I'll ask about azithromycin when I see the consultant. I've started my rescue pack of anti bi and steroids now to arrest any further decline. Thanks again

[Patk1 in reply to Plantation-nut]

U need at least 14 days antibiotics for ea infection.do u have a flutter device eg aerobika to help get stubborn mucous up?it does help + is available on prescription in uk.ru also on a steroid/ combined inhaler? X

[Plantation-nut in reply to Patk1]

Thanks for the reply, I've got a weeks supply of antibiotics and have requested a further supply. I'm on fluticasone combined inhaler but will discuss a flutter device with the consultant... Thanks for the advice x

[Patk1 in reply to Plantation-nut]

Ask yr consultant to writ & advise gp which antibiotic is best4u× to issue 14 day rescue pack( + yr steroids), too. It's worth giving mucous specimen in at yr appointment too.x

[Plantation-nut in reply to Patk1]

Thank you

[Lfcpremier in reply to Plantation-nut]

Definitely ask for azithromycin if exacerbations are happening too often. I had nu merous infections initially, 13 yrs ago & was put on azithromycin, 1 tablet 3x weekly. So much better!I produce a lot of mucous & nebulise 7%salune 2x daily. My results areworse now but i am a lot older. Try not to stress, there are drugs avaible. Good luck!

[Plantation-nut in reply to Lfcpremier]

Thank you, I take comfort from your reply.

[Alberta56]

i hope something positive comes out of your visit to the consultant. Do you have an AeroBika or similar huffing device? I find mine very helpful in bringing up mucus without too much effort. Best wishes.

[Plantation-nut in reply to Alberta56]

Thanks for the reply, I don't have an aerobika device but just manually do the huffing routine every morning, I've been advised on here to increase to twice daily, your advice is appreciated.

[Plantation-nut in reply to Alberta56]

Thanks for your reply, something I can discuss with the consultant

[Donald_1931]

As you become more and more experienced in dealing with your breathing problems you will become more in control of them. As for fear of the future , I’m 93 and not the oldest on this group.

[Plantation-nut in reply to Donald_1931]

Thanks Donald_1931. I'm learning a lot as my illness progresses. It has been a lifetime of adapting to the changes and the progression has accelerated recently. I take comfort to know there is still life in the old yet and I hope to reach 93 too. Thanks for the reply

[Mellywelly]

I'm so sorry chook, I have copd and still waiting for something to work but I'm sure someone on this forum will be able to help you. Looking to the future with any sort of breathing problems can send you down into a deep hole, as I was 2 weeks ago. I wish you the utmost best and I'm sure someone will be able to help you and give you guidance from their experience. 😉

[Plantation-nut in reply to Mellywelly]

Thanks Mellywelly. I do try to keep it in the day but sometimes the early hours of the day laid awake can encourage that train of thought get carried away. I've had loads of advice on here and don't feel quite as alone as before. I have a lot to discuss at my next appointment. Thanks again

[PAP48]

Morning Plantation-nut. I’m so sorry you feel so breathless. I, too, am a bronchiectasis sufferer and my advice, for what it’s worth is firstly to have a sputum sample analysed so you can be prescribed the right antibiotic for the infection, if you have one. I second the use of an Aerobika device, really helpful in bringing up the sputum. I also take Azithromycin 3 days a week to help keep infections at bay and a saline nebuliser and/or steam. I also have an air purifier in my bedroom which I have on at night. I hope you get the help you need and feel better very soon.

[Plantation-nut in reply to PAP48]

Thanks for your reply, I've had some great advice on here. I'm awaiting the results from my recent sputum test, it's been sent to Birmingham for testing. I really appreciate the reassurance people have given me. Thanks again

[LissacFrance]

Hi, you don`t say if you are on Azithromycin for your bronchiectasis. This is one of the most effective drugs to help keep bugs away from lungs. My wife has been on Azithro for last 4/5 years with very good results and no side effects that we can see. She is at this moment have one of the three physio sessions each week. Take care and if not taking Azithro ask your consultant about it. Have a good day, Chris.

[Plantation-nut in reply to LissacFrance]

Thanks Chris, the Azithro seems to be a common theme so it must be the way forward for me... I appreciate you taking the time to reply and hope your day is going well too.

[LissacFrance in reply to Plantation-nut]

Pleased to offer advice. Azithro acts not only as an antibiotic but also antiinflammatory, so double benefits. Take care, Cris.

[Izb1]

I really feel for you and can relate to the overproduction of mucus that brings the constant cough. For me it didnt matter how much clearance I did, the next lot of mucus is already in your nose, throat and chest. You could try antihistamine that at least dries up the mucus for a little while. My new consultant did a whole lot of tests and found I have developed overlap asthma on top of my bronchiectasis and put me on Fostair Nexthaler which has been a real help, it has stopped the massive amount of mucus I have and helped my breathing so much but has given me a little cough that's annoying, especially at night. I saw my consultant last week and she has said we should try the non powdered inhaler again. I have had difficulty pressing down the inhaler due to rheumatoid arthritis which has been bad in my hands and arm this last 6 months. I do hope you find something to help with this x

[Plantation-nut in reply to Izb1]

Thanks for the reply, sorry to hear you are in a similar condition. I did wonder about the years of taking inhalers of various sorts if they contributed to the lung damage. Ah well, at least I have some commonality with people on this forum... Thanks again x

[Izb1 in reply to Plantation-nut]

Not sure it's the inhalers that do the damage, think it come with the rheumatoid and the medication x

[cazza34]

Hello to you I suffer with the contstant coughing...which is exhausting, have you tried Oramorph it's a morphine syrup it also comes in a slow release tablet form. It helps me a lot I take it b4 anything strenuous like having a shower etc.

[Plantation-nut in reply to cazza34]

Thanks for you reply, I am overwhelmed with the support I've been given on this forum. It could be an interesting chat with the consultant 😊

[peege]

Hi there, just to say you're no longer alone . With over 56,000 members with various lung diseases with various levels there's always someone here to listen and offer support & understanding. Best of all there is the helpline open 09.15 to 5pm Mon to Friday to speak to a respiratory professional. There are other methods of drainage besides huffing (which may not be enough for you at the moment) besides aerobika & accapella devices (I dont think they are expensive), placing a straw in a glass of water then blowing to add a little resistance could help. A respiratory physiotherapist would be very useful to you to teach you techniques. Many with bronchiectasis have postural drainage sessions twice daily some three as its so essentialto get that mucus up and out so it's not hanging about making a perfect warm wet environment for bugs to multiply. Do give the helpline a call they're marvellous 0300 222 5800

[Plantation-nut in reply to peege]

Wow! I'm blown away ( no pun intended) by the support on here. I used to have to do postural drainage at home for my son many years ago, he's very healthy now and keeps his self fit and well. I'm so so grateful for the advice today and will call the helpline for further information.

[Willanna]

Hi I also have Bronchiectasis I'm on long term antibiotics Doxycycline it's 6 weeks on then 6 weeks off seems to reduce infection, increase lung clearance it will help I also invested in aHand help device called Arasure it help losses the phlegm that's deep down in your lungs .

Hope you feel better soon

[Plantation-nut in reply to Willanna]

Hi Willanna, I'm also on doxycycline as part of my rescue pack, I've plenty of food for thought and appreciate all the advice.

[Swizzy]

You have had lots of helpful and supportive replies from the lovely people on here. I thought that I would address your anxieties from a different angle. As you say that you had breathing problems from very young I am guessing that you have had asthma most of your life and that bronchiectasis has developed along side.it.Asthma with bronch is complex to treat and both need different treatment. The drugs that you say that you have are for the treatment of asthma and with a bronch/asthma crossover the breathlessness is usually down to the asthma unless a bronch exacerbation is going on. This is shown by thicker darker copious amounts of sputum and needs antibiotics.

There are many of us with bronch who produce a lot of mucus even when there is not an exacernation and this needs to be expelled. Sometimes the use of carbocysteine and acetylcystein can make the mucus so runny that there appears to be really copious amounts and it is difficult to get rid of it all. I have found that Letting the mucus stay a little thicker and using breathing tecniques and an aerobika to help move it results in most of the mucus being expelled successfully.

There is no point in worrying about the future. With proper self management and the right meds you should live a long and productive life. I am 74 and have done everything and sometimes more than my fit friends have done. Looking at test results and taking in the opinions of those reading scans is simply an exercise in useless worrying. I am sure that with the help of your consultant you can get on top of it. If your con is an asthma specialist you need to look for a specialist in bronch as only they have the knowledge and experience of such a complex condition. I hope that helped a bit.

[Plantation-nut in reply to Swizzy]

Hi Swizzy, that helped much more than a bit! I appreciate the reply and your comments are spot on. I did suffer from chronic bronchial asthma from childhood and felt the isolation mentally as well as physically. I'm 71 now and being less active brings another dimension to the issue. I try to walk every day even if it's just around the block. I'm blessed to live in a green area with little pollution and plenty of open fields. I know that worry is pointless but I reckon it's just a temporary phase I'm going through as I get to grips with the bronch. I really appreciate the time you've taken in replying

[Swizzy in reply to Plantation-nut]

We are similar in our struggles I developed AF and cardiac myopathy in 2012. I was doing ok until a cardiologist punctured my lung and failed to act on it for 3 hrs. 2 yrs later that lung went down 4 times because it had never been closed properly. I was in hospital for 3 mths but to their surprise clung on. I now have much less energy than I did and struggle to walk much. I got a little dog so that I have to make the effort to get her out for walks. It is a struggle but I keep on. I will think of you when I am.making my way around my village with Lily.

[Plantation-nut in reply to Swizzy]

It just goes to show you never know what people have gone through and are still going through. I've been granted massive gratitude via this forum with the best advice and heartwarming well wishes... Take care and I too will think of you walking with Lily.