Bronchiectasis

Usually Bronciactasis is not curable. But your son will have to keep on consulting doctors and keep on taking medicines prescribed by them. 

The doctors may also prescribe some exercises.

Life will be a little tough ........but almost normal.

eleena100

 

Hi there

I've had bronchiectasis since I was about 8. I'm now 48 and it's only the last 4 yrs I've had to slow down & rest more. I kept myself fit by running 3 to 4 times a week & also swimming when I got the chance. Exercise is imperative. Depending on the severity/damage to his lungs (hopefully they are not too damaged) this can be managed with the correct medication & physio. Breathing exercises with an acapella is also excellent for clearing mucus. Other things I take is manuka honey & turmeric. A good consultant is also vital. Do you live in the UK or elsewhere.

Rachel x

Dear Pinksnugsy

Thank You for your reply. I am living in Singapore. This is rare case in Singapore especially for children.

We were very shock because the doctor keep given us coughing and asthma medicine from all differents doctor until his situation became serious, doctor sent him for CT scan but the lung already have so much damage.

We are very worry about his situation and currently I have to stop working and take care of him with daily therapy, running and cycling. Thank you for kind advice. This messages giving us hope.

Thank You eleena100.... This message gice us hope. We will work closely with his doctor. Appreciated your time.

Right I see you. Well you are doing all the right things for him. It's also vital he is on the correct preventative inhaler. If the coughing & wheezing is bad ask to try a different one. Does he have regular infections if so what are the doctors prescribing?

Rachel

Diagnosis of Bronchiactis comes as a shock.

But slowly things will settle down.

The patient will have to give some more time to excercises and medications. Otherwise, he should be almost normal.

There may be spells of attack, but they will be controlled.

Also discuss with your doctors there, whether stem cell therapy would help. This is still in experimental stages........but has lots of promise.

Diagnosis of Bronchiactis comes as a shock.

But slowly things will settle down.

The patient will have to give some more time to excercises and medications. Otherwise, he should be almost normal.

There may be spells of attack, but they will be controlled.

Also discuss with your doctors there, whether stem cell therapy would help. This is still in experimental stages........but has lots of promise.

Hello,

Whether or not an inhaler will work at all depends on the person and their actual condition because there can be very serious side effects from the preventative inhalers which contain steroids.  He is very young so treatments prescribed for older people may not be best for him.  Try to find a specialist in bronchiectasis, not just asthma and COPD - they are very, very different.  Asthma is sort of opposite of bronchiectasis in fact - a narrowing of the bronchi rather than a stiffening / opening etc.

Whatever you do please try to base it all on facts.  For example, get sputum samples cultured while he is relatively well (ie not in the middle of an exacerbation) so you have a baseline.  Then at the start of an exacerbation, before he starts taking antibiotics, get a sputum sample again and have that cultured.  Start the antibiotics as soon as that is done to minimise further damage, wait for the results of the culture and adjust the antibiotics accordingly.  Don't wait for the result before you start the antibiotics.  If in doubt (ie is it just a cold?) have him start the antibiotics course soonest - you should have some at home for this as these things often flare up at the weekend and you really don't want to wait before starting the course.  The course should always be at least 14 days and be taken regularly and completed.  In a severe situation get him put on IV antibiotics ASAP.  be insistent with the medics.

There are also fungal infections and other possibilities so get a very thorough set of lab work done, then get the drugs that target that particular bacterium or fungus.

I was diagnosed at 19 and am now 59 and still working full-time.  I have been very agressive in my own treatment and give the docs a very hard time and insist on tests etc.  I also do not use the inhalers because of concern over long-term effects and the results of my own tests - for example a 6-month course of preventive inhalers did not improve my peak-flow at all so I stopped them.  When I finally saw a specialist many years later he said I made the right decision because he sees many people with issues from side-effects and that while steroids are good for asthma they are often ineffective for bronchiectasis.  He agrees I should not be using them even though a non-specialist lung disease consultant said I must and even shouted at me when I told him 'no'!

Oddly enough I find that taking 1200mg of aspirin, in 2 daily doses of 600mg each, improves my peak-flow by about 10%.  I know you can't give aspirin to a young child, I only mention this by way of illustrating the evidence-based approach needed with this (and other illnesses too I believe).  I think I do have some sort of inflammation in my lungs and somehow aspirin is a good drug for me.  This was a matter of just trial and measure on my part.

Get a complete set of lung function tests.  I found out only a few years ago that although my peak flow is relatively high (for age and height and sex etc) I only have about 90% lung capacity and about 55% oxygen exchange capability.  This is what has been causing me to feel breathless compared to other people and has limited my sports / exercise capability - ie I can walk for miles but can't run more than a hundred or so meters at a time, I get distressed in stuffy places way beyond how others feel, and so on.  I am also very sensitive to high altitude and get ill well below the standard level of 6,000 to 8,000 feet - as low as 3,000 to 4,000.  Now I know this I can adjust what I do and I don't feel as distressed and frustrated as I used to - I know the facts and why all this is going on.

Having said all that I have been very ill a few times with severe pneumonia but with the right antibiotics managed to pull thru and with an aggressive rehab program (one hospital joked about charging me for wear to their carpets as I walked the floors every hour once well enough to do so - 5 minutes every hour, then 10, then 15, then add some stairs, etc) am able to do most things.

I still ski, just make sure I sleep at low altitude, I swim in open water for hours at a time, go for long walks every weekend, travel weekly on business (by car or plane), and so on.

I swim as often as possible and use a cross-trainer at home (I bought a proper professional one) about 4 to 5 times a week, and do my chest physio and about 20 minutes of Pilates twice daily.  A good specialist physiotherapist who can teach him (and you) chest clearance techniques, and even breathing techniques (I have a tendency to breathe too shallowly, caused by my desire to avoid the pain of breathing more deeply) is also a great help.

Oh yes - pain.  He may have pain, I generally know that an exacerbation is coming because I get pain in the worst-affected part of my chest.  You will be told that the lungs have no nerve endings therefore cannot cause pain but while this may be true there may still be pain, pleural pain.  This can be severe particularly during an exacerbation and can be hard to treat / relieve.  Sometimes stretching or heat helps, sometimes I need drugs.

The frequent use of antibiotics may upset your son's digestion.  This may last while he's on them or continue for longer.  When this is a problem try to avoid foods that need to be digested by the bacteria in the lower digestive system, give him foods that are digested by enzymes and stomach acid.  This means avoiding many carbohydrates though white rice is OK.  Have a look at the FODMAP diet info on the web.  I suffered severe stomach upset and pain for years before I worked this out; the anibiotics also made me lactose-intolerant over time which was unexpected given I am of northern European descent.  Now I largely follow this diet and no more problems, though I can have more of the 'difficult' carbs the longer I have been off the antibiotics.  So I follow the diet 100% while taking them and for about a month afterwards, and then gently try reintroducing these foods in small quantities.  Then it's back to square one on the next course of antibiotics.

So from being told at 19 that I only had 2-3 years to live here I am, probably doing more than most people my age . . .

Best of luck to you and your son, I hope some of the above is of help to you.

 

Uk Gardener thank you for sharing.I had been going through the motions with doctors trying to get a diagnosis since late 2012 i was finally told it was Bronchiectasis at the beginning of 2015. From all that i read online i thought my situation hopeless because everywhere states a life expectancy of 5 years but with hard work i know that i can see my kids grow up.Thanks for the inspiration .

 

Good luck and best wishes Keston.

There are so many Bronchiactasis patients surviving since 30 / 40 years. You have to change your life style..

Spend a lot of time in clearing your lungs, etc.

May be you will have to take different medications, from time to time.

But other wise, you will llive a long life.

Think positive.........

Totally agree positive thinking is the way I live my life.

Happy Friday ☺

Another hope is the stem cell therapy.

Clinical trials are going on.

It may take a couple of years, but stem cell therapy may provide a lot of relief.

I was a film editor at the BBC. I edited two programmes about the early use of Stem Cells in medicine. This was the late 90s.

We had a lady in the USA who had been in a wheelchair for five years who walked again sfter Stem Cells where injected into her brain. Her consultant was amazed, he not expected such a quick reaction. 

A lady in this forum with COPD had Stem Cel treament a few months ago, she a slight improvmement. Not as much as hoped for.

Though I suspect further developments of Stem Cells will in the end cure COPD as well as many other dieseases. 

We did featyre a guy in ouf film who beat his stomach cancer with a drug that derived from Stel Cells.

______________

 

There have been a lot of research and advances in Stem Cell Therapy in recent years......

Hi,  I am 86 and have had Bronchiectasis for over 15 years. Breath as best you can,  keep rested, drink lots of water.   I do nebulizer, precusion vest, breathing exercises, etc.  But I think what has helped me most is that I do Tia Chi.... my kind of Tia Chi.  Simple beginners stuff.   I do it when I'm waiting for morning coffee,  during a TV commercial break.  Since I not able to do alot of exercise it has helped me for years.  Cough when you need to.  I never went on the multi antibiotic treatment and am happy I didn't.  We can live with Bronchiectasis -- it just inconveniient.  

Be Happy.

A word encouragement.  I am 86 years old and have had Bronchiectasis for at least 15 years -  that's when I was diagnosed; I think I had it several years before then.   I take care of myself. Most important things are drink lots of fluid, get rest, breathing exercises and move.   I drink a glass of red wine daily.... I think that helps too.red wine.  

I also have NTM Avien. (Non tuberculosis myco bacterium avium intracelular)  and I'm still here.