I've been diagnosed with BRONCHIECTASIS, what should I know from the Doctor?

Hi there, were you diagnosed by having a scan, if do the doctor should be able to tell you the severity of it. Whether its upper lung, lower lung etc. I asked to look at my scan and it gave me an idea of how it was.

As time goes on you will find ways of coping with the condition. Good luck and stay well...

I am also in a foreign country and have no one to translate for me so have to do my best with the language I have got, I researched and researched and researched some more to gather what information I could after my diagnosis, found Canada and the USA the best for info. I have a pretty rare combination of 4 advancing lung diseases, including bronchiectasis, so needed to know what treatment I was prepared to accept or discard

Wishing you all the very best

Sue

You might ask one of these questions:

(pick what interests you lol)

'' Should I be on antibiotic therapy?

" If I get an infection, what can I expect for treatment?

"if I get a fever but don't have a cough, should I be concerned?

" Some patients lungs bleed. How serious is that?

"How did I get this disease?

"Would a nebulizer help? To use regularly or just when my chest feels tight?

I have Bx because the immune deficiency disease I have caused me pneumonia so many times. THEN at 62 I started IV therapy with donor plasma (IVIG therapy) to replace the immune cells my body doesn't make.

I haven't gotten lung infections for 2 years!

I hope we have helped a little.... ask away anytime! Where ARE you anyhow?

first is don't panic it is not life threatening and it manageable it may take a while to find the right medication that suits you . you need to get into the routine of clearing as much mucus out of your lungs . this takes a bit of practice but there are some good video on u tube showing you how to do this .(the British lung foundation ) is a good site for information Its a good idea to ask the doctor for a rescue pack to keep at home if you develop a chest infection you can start treatment sooner rather than later. Hope that's helpful

PS I'm now 77 and still here

Hi Yulian

i am sorry for your diagnosis.

If you cough a lot, ask the doctor what kinds of meds will help you control that. Aside from severity there seem to be 2 types, sort of dry and wet bronchiectasis.

Ask if there is any physio for lungs. You need to do everything you can to preserve and maintain the lung function you have now. In the States on many kinds of health plans, there is no physio until the lungs are below 50% functioning, so we have to do it ourselves. Swimming or even just walking in a pool helps many. You are younger and may still have a lot if strength and stamina.

This is to do, no need to ask about it: avoid being around chemicals, perfumes, smoke, dust, pollens and mold as much as possible. If your family uses scented laundry products, that needs to change. Any perfume scent that lasts for hours has a chemical that is bad for lungs. Some of these things you can't control -- where i live, there's stuff in the air all year round, with 4 periods that are 10 times worse.

Lastly, I don't know where you are but here in Texas my lung doctor told me in February to stay away from doctor's offices unless i was so sick that he told me to go to a hospital. So if you can wait to go see the doc again until Coronavirus has damped down a lot, then wait. You now have an underlying lung disease that means you're apt to get much much sicker if you contract this virus.

Yes I agree with previous message, when I discovered washing powder etc without perfume smell it made such a massive difference, I think many bronchiectasis sufferers have so many allergies which is part of the battle. Also try and stick to a good diet, green vegatables etc.

hi i am 57 and was diagnosed a few yrs back . . i was always getting infections iwas constantly on steroids and antibiotics . but i went on a trial for the asthma low immune system injection . oh boy what a difference it has made to me i have not had a steroid for 6 months although i take the 3 antibiotics a week for life and philocontin and montulusk . but it has made a massive impact for the good in my case . ask your doctor about the injection . i do it myself once a week it is a pen . good luck

Hey there - I think it's critical to determine what caused your bronchiectasis. If you don't know, you can't make the changes. I had chronic pneumonia for seven months - turns out a pair of birds I had were causing the lung damage. We found a new home for the birds, cleaned the house top to bottom. The pneumonia stopped - but the damage caused bronchiectasis.

I would also ask about a sputum culture test if you're coughing up anything that's green, brown or red. If you're lucky enough not coughing anything up, it's important to avoid colonized pseudomonas. Research how it happens. I have colonized staph from a broncoscopy, and occasionally need antibiotics to fight it.

My experience with perfumes, dust, etc and other chemicals doesn't affect me. I can be around those things all day and never have any trouble. Everyone's BX is different.

Above all, you must be very diligent about not catching the coronavirus!

Take care,

Shirley

I was only diagnosed a few weeks ago, i had a long discussion with my consultant who was very good, I asked lots of questions of things that were bothering me, firstly how do i keep as well as possible, she agreed daily walks when able to were important building up my lungs and gentle exercise is needed.

I spend hours in the morning clearing my chest, she said this is common and the positive side of it is to continue with the chest clearance exercises as this will reduce the risk of infections, i also asked will this improve in the better weather, she replied possibly but warned the winters will be worse.

I have read absolutely loads of websites but both the Consultant and my Respiratory Nurse say only use the British Lung Foundation website.

Good luck and keep well