Bronchiectasis

Hi, I was diagnosed with bronchiectasis 52 years ago when I was just eighteen, I was devastated, I was in the army at the time, just done two years and loving it, but of course I had to be medically discharged as I was no longer fit for military purpose. I thought my life had ended, but it goes on and here I am at 70 having just this week been told that I now have PA in my bronchiectasis and will need to take nebulised colomycin twice a day forever.  Bronchiectasis is not the end of the world, it just means a different way of life, people look at you and think you are normal, they just dont realise that you have this debilitating condition that needs constant dealing with, I wish you all the very best, and think on, there could be a cure just around the corner the way medical technology is progressing today, it is certainly different to 52 years ago!

Any one has experience with the VEST and portable oxygen concentrators.

i would love you to hear from you.

Anila Gupta, India

Hi Jen, PA is abbreviation for Pseudomonas aeruginosa which colonises bronchiectasis damaged lung areas and is almost impossible to get rid of, so I am told, the treatment for it is colomycin antibiotic nebulised and inhaled directly into the lungs twice daily in my case, though I am just starting on the treatment and the colomycin is being delivered today, so, its "here we go again" another stage in the life of a sufferer of this horrible bronchiectasis,

All the best,

Regards

Pseudomonas is a horrible nasty infection that's so difficult to get rid of, I find once I have cleared it it comes back in a different form, I have had three different types of pseudomonas in the the last two months and despite having IV antibiotics nothing shifted it until I went on to ciprofloxacin tablets, the trouble with these is they give me sore joints and upset tummy but it's worth it to be rid of the beastly thing. I do posteral draining twice daily as well, I found the flutter hard to use and it didn't shift the sputum, inhaling does help to loosen it though if that helps. Don't give up everyone, I know it's a horrible disease, I was diagnosed with it at 7 years old after contracting something or other at 6 weeks old, I had many infections over the years but try to keep positive, eat well and get plenty of rest and enjoy the fresh air.

 

Hi I'm 44 and got it due to pnomonia I had I can't go into the job I want so I undersrand

Hi. I am so sorry to hear that. I was diagnoses with it 3 years ago when i started noticing shortness of breath. A ct scan confirmed it and I was sent to a consultant. He took one look at me and said i did not need any help as it was "hardly there". I then had a nurse walk me round the department and waiting room with an oxygen sats meter on my finger declaring to everyone that my sats were "fine". Needless to say I have never been back since, but have noticed increases shortness of breath. I have a doctors appointment soon and I will ask to be referred to the respiratory nurse for advice. I have just turned 58 and i often feel sorry for myself as I have just retired. Its reading about those with their lives still adhead of them like u that ground me as u have just done.

Take all the advice you can. I dont know if the internet is a good place to research, as I went from reading the life expectancy was 5 years to reading about people who had managed with it for twenty years or so.

Make sure you are happy with your consultant. I am going back but if i am not happy with the response this time I will ask to change consultants.

Good luck. Join the forum so i can find out how u are doing.

Oh dear. You are very young to be diagnosed. Get a second opinion from a rarely good consultant. They should do a gene test. I have one gene that is MS which makes people more susceptible to Bronc.

I don't think it is stress that effects it although all our immune systems are low when under stress. The main problem with working at a nursery is that you pick up infections from the kids. I was a soccer coach and had to give because of travelling constantly on coaches with the players and standing out in rain and cold.

If you definitely have got Bronc then you have to pick you self up and make a new life for yourself. I love travel and refuse to let the risk of getting infections on the planes stop me. I take a mild dose of antibiotics as I fly and for a time after with my regency antibiotics with me in case I get an infection. WASH your hands constantly most infections are past from hands to nose/ eyes. Keep a Duran e from coughing people and away from dust. It can all be done easily but get a second opinion from the best consultant you can find. Then make a life for yourself. My mum had it due to her family smoking in her presence. She had a marvellous life and lived until she was 88. Whether you have it or not it can be managed. Live. Love and be loved. Your got years of a great life waiting for you.

Hi Jen

sorry to hear that you've bronchiectasis at such a young age. 

I have it and didn't develop it until six years after visiting a consultant privately. He treat me with steroids oral and inhalers instead of focussing on the infections which allowed this to develop. I'm now on a nebulised drug "Tobi" one month on one off but before that was on nebulised colomycin twice daily. I also have a rescue antibio Co Triamoxiclav (2 week course) and if I feel unwell or something is not right I have learned to administer IV antiobios at home ever 2/3 years.  

Talk to your consultant about your options but the secret is keeping exacebatory infections to a minimum to prevent the condition worsening as best as possible. 

best of luck and take care of yourself. 

I have had brochactesis for 10 years now,  having received breathing techniques to

get rid of mucas,from the hospital , i find them so good, in fact i could not continue without them and i am so grateful to the physiotherapist.  If your doctor has not already referred you to a hsopital, please do ask to see a physiotherapist

Hey Jen,

I am a bit older than you, I'm Simon 33, got diagnosed with bronciectisis a couple of years ago after a12 months of chest infections, prior too that bad year I had always thought all I had was asthma but the mucus production obviously had increased and finally made it noticable. 

Look I wanted too just say, your not alone with this, I was feeling like my life was OVER when they diagnosed me with this, but yaa know what, seriously, doing gentle jogs, and doing the mucus clearence exercises along with an accapella drivice really does help bring your mucus up daily, and since using these two methods I havn't had any infections. Coughing it up is a pain, I get down some times but hey, I can still have a beer and see friends now and again (I have anxiety) but if I didn't have they they recon I can live a life just like anyone else aside from an added (boring routine now of clearning this) it's just like an added chore Jen but once it's done, were free.

Our lungs have some collapsed or damaged airways in which means our mucus is stuck in there and can't be pushed out like peoples without bronciectisis can, so we just manually drain that out and our lungs function just as good as anyone elses once we clear that. I reccomend as much exercise as you can, also apply for esa and pip, they have been a life saver for me while I have been getting back on my feet and leave you with a little financial security which 100 percent relieves the weight and worry which you do not need on top of having this.

If you need too chat just let me know.

Hope you are okay

Simon x

Dnt worry ,you can contact to Dr. Mohan KT(Pune) who is specialist and gives u a better solution of your problem.