Bronchiectasis : Hello people, I have... - British Lung Foun...

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Bronchiectasis

Hello people,

I have joined the community because I need to exchange ideas and info about the lung condition that has been with me now for seven years.

I have tried every remedy under the sun to escape the dread of bronchiectasis and now I am recovering from yet another round of pneumonia.

It will not beat me!

Thank you for having me,

Musical Chairs

40 Replies

Welcome musicalchairs. I feel for you it does feel like we are going round in circles from one infection to the next. I too have bronchiectasis and severe asthma have just come off my second trial of nebulised antibiotics . Very scary when what is supposed to heal you harms you. However we must go on can not let the little bliters win. Often say l could do with Dyna Rod having a go at my lungs couldn't do much worse and they are supposed to be the best at cleaning gunk !! Enjoy the good days and the wonderful knowledgeable folk who post on this site x

in reply to Delamere

Thank you Delamere for you kind reply...it is indeed scary and quite challenging on a daily basis. Interested in how others are coping.

Hi, I'm sorry to hear you have had pneumonia again. I suffer with bronchiectasis too but I am under a consultant who oversees my condition. A specialist nurse rings me every two or three months to check on my health. Do you have a consultant or a specialist nurse who can help you?. Bronchiectasis needs to be managed properly. Giving regular samples of your sputum for example to ensure you are on the correct antibiotic. Chest clearance is vital and I use an Aerobika to help with this. Drinking plenty of water thins out the sticky mucus to make it easier to expel I also attended a Pulmonary Rehabilitation Programme for 8 weeks. This is an excellent course which combines exercises and education. Perhaps you could ask your doctor about this as I found it invaluable.Good luck and I'm sure other members on here will be able to offer you advice too.

in reply to RoadRunner44

Thank you Road Runner for all those good tips.Looking forward to seeing how others cope as I no longer have a specialist and prefer to go alone now...(long story)!

Welcome . I learnt more here than I ever did with consultants. Friendly people too

in reply to Jaybird19

Thanks Jaybird19, always good to hear how others get by.

Damon1864 profile image
Damon1864Volunteer

Welcome to the site it's nice to meet you. I love your determination don't ever let go of that. You will find everyone on this site friendly and supportive and the administrators are great. Have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

in reply to Damon1864

Thank you Damon 1864 for you friendly welcome!

Hello and welcome to you. Have you had the pneumonia vaccination? I had it in 2013 and not had it since. (Prior to that 5 times times pneumonia in less than 2 years).

in reply to peege

Hello peege, something that is well worth looking I to no doubt especially now.

Welcome to our group.i too hav bronchiectasis,among other lung +airway probs.id reiterate advice given.do learn to clear lungs x2 minimum,if u don't already,more if u can/need to.the aim is to get it up so less likely to get infected.( active cycle of breathing is gd).what meds ru on x

in reply to Patk1

Hello Patk1, yes lung clearance is everything isn't it ? Most essential to clear out as much as is necessary...certainly puts a stop to social outings!

Patk1 profile image
Patk1 in reply to

Yes it is + yes and it does!I take carbocysteine 2x2-3 times a day and use hypertronic saline neb after salbutamol nebuliser,wait a bit before clearing chest. They do help me x

in reply to Patk1

Thanks for that suggestion. I'll look into it but since I have been using the AirPhysio device I find that I can clear very easily. Stopped using salbutimol as I am wary of side effects. Have to fix lung clearances before any ideas about going out especially shopping. No good to get stares for coughing these days! Not on any meds now as none offered and none wanted. I'm going towards diet only.

Patk1 profile image
Patk1 in reply to

You'll have to let us know how u get on. I do full clearance at least 2x a day & I usually also do short clearances ea cpl hrs as I'm v aware of it.

in reply to Patk1

That requires so much commitment and dedication. The daily life of the bronchiectasis sufferer is one of total commitment. I will certainly let you know how this diet thing pans out because I can't not try it!

Patk1 profile image
Patk1 in reply to

Yes do.yes takes lot of acceptance,commitment and energy.but worth it x

in reply to Patk1

Indeed! Have a lovely weekend coming up :)

Hi Musical Chairs and a very warm welcome. There are quite a few os us who have had bronchiectasis pretty much all our lives, me included and you have had some helpful advice from your friends above.

I am interested to hear about ‘all the treatments under the sun’ that you have had. I assume you have a respiratory consultant with a special interest in bronchiectasis and would therefore have been referred to a resp physio to learn all the ling clearance techniques and which suit you best.

Here is a link which I was involved with when I was part of the patient advisory group. It covers everything bronch From how normal lungs function through to interviews between clinicians. Something to dip in and out of.

europeanlunginfo.org/bronch...

Cx

in reply to cofdrop-UK

Hello cofdrop-UK, thanks for the tips. Yes I met a terrific respiratory physiotherapist who set me up with endless education and clearance tehniques for which I am eternally grateful.The treatments under the sun ranged from nebulising normal saline to heavy antibiotics. My own remedies included ionic silver, hydrogen peroxide and mucolytic herbs.

Now I rely on diet and the AirPhysio device for positive end pressure. Have you heard of this gadget? It is used to help shake up the deep mucous that is hard to get up. Very useful item. Thanks for the link.

in reply to cofdrop-UK

I also went to a Chinese Medical Centre for acupuncture and smoke treatment. Nothing seemed to touch the production of heavy secretions, then I found a website advocating detoxification by grapes!

cofdrop-UK profile image
cofdrop-UK in reply to

Yes I have heard of the air physio and most Peps have been discussed on here over the years. I have heard of all the stuff you mentioned except smoke treatment. Cx

in reply to cofdrop-UK

I remember the name...moxibustion which is a torch of smouldering mugwort giving off a smoke which they rotate over the body for some reason. They did this over my abdomen. When I first visited this clinic I thought they were all smoking but it turned out to be the moxibustion!

cofdrop-UK profile image
cofdrop-UK in reply to

Thanks for explaining. You learn something new every day cxx

in reply to cofdrop-UK

👍☕

Welcome! I have bronchiectasis too. It's interesting to hear about the different things you've tried. xx Moy

in reply to MoyB

Hello MoyB, thanks for your reply.I am mostly all out of ideas now except the diet idea. I learnt that certain foods can cause mucous to form. So hell who wants more mucous! So I am following this mucusless way of eating and I must say that my energy has picked up greatly.

Check out Dr Morse ND on the web.

Yet to see if it will help to dry up the poor lungies though. As my brother says "keep truckin"...

MoyB profile image
MoyB in reply to

👍😀xx Moy

in reply to MoyB

🍇🍇🍇

Hello MusicalChairs,

I have bronchiectasis too, I've had it 7 years now. I also have a small airways disease called bronchiolitis obliterans.

Yes, sometimes it gets me down but most of the time I cope. I've had to learn to live in the slow lane.

Drinking plenty of fluid, gentle exercise, fairly healthy diet, following the instructions carefully when taking your medication , lung clearance are all important.

As any lung disease leaves you tired find easier ways of doing things. Sitting to do jobs that you normally stand for, using a microfibre hair turban instead of towelling your hair dry, etc.

This little energy savers leave you enough get up and go to do things you enjoy.

Check out the British Lung Foundation (BLF) website for genuine advice and true life experiences.

Try not to mourn the hobbies you can't cope with but enjoy those you can still do.

Last but not least, only check NHS or BLF for facts and figures, too many Dr Google sites will be full of doom and gloom telling you you only have 5 years to live!!! Well Lots of us here would have been dead for years if that was true.

Big hugs xx

in reply to wheezyof

Hello wheezyof. Good to read your reply which I fully I understand. Loss of energy, loss of weight and lungs full of you-know-what. Well since I started eating grapes for breakfast and salads for lunch I have picked up no end. By teatime I was always too tired to cook, now its just sardines on crackers for the b12. All I'm hoping for is to dry out! When I feel more improved I'll go back to the Doc and see the reaction!

in reply to wheezyof

Sorry wheezyof, completely overlooked your small airway issues. How difficult it must be just to get a lung full of air. It was not so long ago that I had trouble with the small airways and could hardly hold a conversation for being so out of breath. I tried Vibernum root tea. The Viburnum relaxes the smooth muscle giving more air and gradually allows the alveoli to expand better. You may be able to find it online as I did.

wheezyof profile image
wheezyof in reply to

Hi, Thanks for that idea. I do drink a lot of herbal teas but I've never tried Viberum root. I'll look out for that one xxx

in reply to wheezyof

I was a little inaccurate wheezyof!I checked to see that it is Viburnum bark, called Cramp Bark. You may find it in your supermarkets as Crampeze, but otherwise it sells from herbal specialists online. It's good for leg cramps but amazingly good for airways. BTW, what is a microfibre hair turban?

wheezyof profile image
wheezyof in reply to

Micro fibre towelling hair turbans can be bout from Poundland, Savers. B&M, Home bargains and other bargain stores. in Yorkshire Barmy Bobs (aka Yorkshire Trading). They are thin very absorbent towels shaped like a folded triangle, open along the long side. They have a loop/button or similar fastening on the tail. If you wrap them round wey hair they soak up the moisture very quickly and efficiently. Saves a lot of towelling and hair drying. xx

in reply to wheezyof

I see, another trick to conserve precious energy. Thank you for the explanation :)

Hi Musical Chairs, Welcome to the forum. I have bronch (relatively mild) and find healthy.ish eating, taking the prescribed meds and exercising when I can are what helps. Tell us how your eating plan goes. It sounds very strict, but worth it if it works.

in reply to Alberta56

Hi Alberta56, thanks for you good wishes...I stumbled across Dr Morse ND who produces numerous YouTube videos on how to care for the lungs, stop mucous and regenerate damaged tissue. His book The Detox Miracle Sourcebook presents a whole new way of seeing how the body works. I started on the grapes, fruit and raw salad veggies around five months ago and feel gradually that he could be so right. I am going slowly and carefully though and look forward to better lung health. Already the energy levels have improved.

Hi MusicalChairs and welcome to the site. There are lots of us on here with bronchiectasis as well as other diseases and am sure you will find lots of answers to your questions. I have sinus problems as well which starts of the bronch, dealing with it can be challenging x

in reply to Izb1

Yes Izb1, Since I have been in this unenviable position I take my hat off to bronchiectasis sufferers who live on pure courage. Such a horrible affliction.

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