Bronchiectasis

Hi my name is tjam I am 25yrs from India...i was diagnosed bronchiectasis after 3yrs of constant on and off chest pain and recurrent blood in sputum...i was taking treatment for tb despite negative sputum..finally when I landed up in the icu in hospital for massive bleeding fro mouth they diagnosed bronchiectasis and fibrosis all over lt lung i ended up getting MDR tb as well..i have been on drugs and inj and now its almost 2yrs and i am still continuing it...after 15months of treatment i was going crazy coz i could not sleep,work,rest...i was becoming more of a psychiatric patient i was going mad...i used to talk to myself, i would gt scared if someone coughed in front of me....i heared people increase wt on taking tb drugs but i gained 2kg after losing 10kg Due to tb....i could not go to college i tried going and staying in a hostel as my college is in a totally different state away from home and i started falling I'll regularly the college people sent me back home ...i have lost 3 yrs i was in my final year of engineering ...its 3 yrs and i still have vomiting at times, severe weakness all da time, breathlessness, constant large amount sputum production and most imp of alMY CHEST HURTS Constantly...the ct shows bronchiectasis and post sequale changes of tb like befor nothing new seen....How can i have a normal life?? How long do i have to be dependent??life is miserable ....pls help me

Hie Everybody!

Thank you for this fantastic forum. Believe me i read through from Jen's first posting in 2009 and i must say i have gained so much from all your sharing.

Reading through substantiated my experiences of misdiagnosis. As i grew up everyone in my family

believed i had Atshma as my father was Atshmatic. When i was in my thirties i received TB treatment

three times because of a persistent productive cough regardless of my sputum testing negative. It was

only in 2010 after going through two CT scans with different physicians that a Bronchiectasis diagnosis

was made.The revelation was enlightening.

As from last year i have a physician who knows the disease in depth. I am relying on Ciprofloxacin 500

mg which i take twice daily; Biosolvon solution for nebulization and for lung exercising i use a spirometer.

This management strategy is still new and am not that well yet. As i am posting this i am on a sick leave

from work. I strongly believe this will shape up soon.

I am writing to you from South Africa.

Regards

Tsitsi

Hi tsitsi, I had a vry similar case to yours...i am presently on large no of drugs cause I ended up having Mdr tb as well...but my chest still hurts nd I have lots of sputum production....rt now I rely on postural drainage and exercise to take out my sputum....is the nebulisation necessary?? A dr fren of mine said I should not do nebulisation daily as my lung would develop resistance and later it would not help??after my tb course do we have to take antibiotics life long daily??how often do U fall I'll coz I always end up fallin I'll atleast once a month???wat about inhalers does it help??

Hi tjam,

Here is a link to a very good forum full of lots of very interesting stories of our type of problems and how people deal with them.

http://www.bronchiectasis.info/forum/forum_posts.asp?TID=16&PN=1&TPN=14

I do hope there is some useful advice for you, there is a homemade 'bubble pep' designed in Australia,

Let us all know how you progress, I do pray that you find some answers and some improvement.

Both this site and the bronchiectasis r us site are so useful and of equal importance.

With every blessing,

Lesley

There is another thread here that may be useful https://patient.info/forums/discuss/my-new-bronchiectasis-website-39470

Alan

Hi Jen,

sorry to hear this you are sooo young to have a long term condition!

I have a client (I am a reflexologist) and he told me he tried a complementary therapy with salt.

so maybe it's worth googling how it can help and if it is available somewhere near to you.

good luck and wish you well!

...Thank you Alan for the link, most helpful...

Hie

Thank you Alan & Lesley for your links, i'm still to open them. Tjam my dear i understand what you going through & share your frustrations. Allow me to apologise for such a late response, i was lying in hospital for almost a month receiving IV antibiotics it does get into me..........I regard myself as a fighter but guys there are moments you just feel like throwing the towel. I am home now & still have'nt resumed work.

My Doc suggested a Bronchial wash. I have an idea of what it entails. Is there anyone who went through this procedure & are they any significant changes?

Thank you

Hi all .

I had bronchiectasis diagnosed six years ago and I was put on nebulized antibiotics.

I found that they were making me ill but it took some time for that to build up.

Many people will find them helpful.

I had to give up work at fifty but find I can manage my condition better because I have. I walk 3 to 4 miles a day ...this I prioritize so as to stay fairly well. I also nebulize saline nebs and high dose saline nebs.the high dose saline bring on strong coughing so a bit rough but helps to clear mucus. The ordinary saline is milder but useful. I recently started another med in nebulizer that is not an antibiotic but instead helps mucus to shift in a similar way to decongestant bottle or tablets.. it seems to be helpful

Like many of you I was years with constant or frequent sinusitis and chest infection and asthma diagnosis

Physio I found great but you need experienced respiratory physio. If too expensive a family member if willing can be taught by one to do a good approximation .

Also even specialists may not be good on CF and non CF bronchiectasis group of conditions so find. One who is.. preventing infection is the key.

I have just been diagnosed with this condition and as I'm shortly to fly to Australia is there anything I need be concerned about when flying? I'm told planes have reduced oxygen levels 16% instead of 21% is this a problem?

II cannot speak to the oxygen issue so will let others respond to that. However, as you know, cabin air is largely recycled so infection is a big issue. Since being diagnosed I have followed this routine and had zero infections (before I got them almost every time): use NeilMed sinus rinse before getting on plane (available at pharmacies and important to use daily even when no infection present): insert a new Nasal Guard in each nostril ( it will take a few times before it stops causing an irritation reaction producing more nasal discharge); once plane is in air, use one Curad anti- flu mask ($10 for ten of them and they kill viruses within 5 minutes of contact. I get them in US from Target and stock up but you can probably order them in or ask Boots to order

them). After using, discard all. It takes a little getting used to and it may be good to tell other passengers that you are not sick, just protecting yourself from viruses. Also if your doctor has given you a stock of antibiotics then take a ten day course spanning the trip ( start a few days ahead and continue through). Do the breathing and coughing too, in the loo so you can get rid of mucous, and do take mucodyne ( carbocysteine) which will help to thin mucous and make it easier to drain. Treat any respiratory infection immediately but management of your environment is key. I spend as long as I can in Florida and my bronchiectasis and asthma bother me almost not at all there except when Red Tide is blooming. Then, I stay away from beaches, keep ac/ heating air ducts very clean, and keep pool high in chemicals and never put my head in water. I am 73 and "retired" but lead a very active life.

Thanks Octaguna

I appreciate the suggestions and have already had a word with my Doc, who has kindly given me some Anti Flu masks and upped the dosage of my anti-biotics for the duration of my trip. He feels that should be enough, but I'm looking into nasal guards and sinus rinse at this time, better over protected than under I feel.

Once again thanks for the advice.

I was diagnosed with the disease in Frebruary 2014 i get so tired with it and also suffer badly with my sinuses its making me very down as at the moment i constantly feel ill .

Hi Christine,

The salt therapy mentioned in one of the letters above maybe worth looking into; I have gargelled with salt water and I think that helps my throat.

A sleep in an afternoon will give a boost of energy to get you through the evening. When tired, take a nap; having said that, a daily walk is good, twenty minutes if you can manage it; I try after lunch if the weather is suitable and then have a 'nap'.

I had Physiotherapy advice, a lady came to my home, booked through my GP, and I have a 'flutter' which is very good, although it requires practice and concentration to make it work; It is worth enquiring.

It was distressing having to give up work, having said that, controlling Bronchiectasis seems almost a full time job!

With Every Blessing,

Lesley

Hi Christine,

I have also found out that I have 'parcels' of energy; before Bronchiectasus was diagnosed, I used to wonder why just small tasks seemed to sap my energy. Now I have worked out that getting breakfast, shower, tidy up that I would have normally got through with little thought before work, are now 'tasks' in their own right...three used up already.

By lowering my expectations and working out and managing my time, I have around 7 parcels of energy before requiring a rest...then an hour's sleep will recharge my batteries and give me some energy to cook tea etc. Yes, it is a full time job, Physio' breathing and the flutter is tiring in itself and is one parcel of energy.

I read somewhere on the web about a bronchiectasis sufferer who called them 'spoonfuls' of energy, which helped me to understand. After tea, I can't even answer the phone, my husband takes the calls. The problem being that when someone comes to see me 'I look so well!' if only....

With Every Blessing,

Lesley