Hello, I am 38 years old,I've been Diagnosed with bronchiectasis few days ago, in a different country by a doctor that doesn't speak English, I can't speak his language either. I will be stuck here for several years more, my wife is from here, she can help me communicate with the doctor. I've been reading the discussion on the forum, there is a lot of valuable information that can help so much. I really need some help from other patient with experience. If they will be in my situation, FIRST what is the most important information they would ask from the doctor regarding your condition. I am thinking to make a list of questions and return back to him next week. He is very experienced and kind, is just here the Doctors are extremely busy, people waiting in line, if you want more info you need to do your homework. So for the moment the only thing I know is that I am diagnosed with Bronchiectasis and what is happening inside my body. Nothing else. What are the most important things you would ask the doctor about it? I don't want to miss the most important things. I can see there are different types, mild and severe, both lungs affected, or just one, people make tests of the sputum, or pulmonary capacity. Thank you so much for all your help.
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
Sorry Anne 63515
British Lung Foundation is OK but not a lot of good if you are not in the UK and it offers basic information. I needed to know a lot more than that because like Yulian I am in a foreign country.
I have found that daily walks are imperative, I am already on the maximum oxygen my back pack machine will go up to, if I miss a day I am back to square one and have to start building up my stamina all over again but then it could be my other conditions hindering me too. Hot summers for me are the worst and spring when the pollen is about.
Like one of the other writers, perfume doesn’t bother me but smoke and dust really do, have removed all carpets from my house and only have tiles which can be wet wiped over, not broomed, each of us are different I think depending what caused the problem in the first place. I think I have had bronchectasis since a child lots of pneumonia but the other conditions were caused by being poisoned at work.
I miss birds sooo much. We raised birds just to hear their singing through our open country windows: thousands of parakeets (budgies), ring-necked doves, pheasants, quail, and a few odds and ends. inside was my parrot.
Nowadays i walk through the bird area of Petsmart with my dog & chat with the birds. Pre-Coronavirus we have done this so many times in his 9 years with me that he thinks there’s only 1 route thru the store: Go to the birds & stop, then go to the homeless cats and stop, then over to dog food where all decorum is lost.
Thank you so much for all your messages. You make this place feel so warm and so friendly. I feel like I’ve been hugged by each one of you (like humans used to do it before the COVID-19 show up). I am already more confident, relaxed, positive then I used to feel in the first day I found out my diagnostic.
I will reply to all of you in this message.
Yes, I was diagnosed by having a scan. I will keep in mind to ask the doctor about the severity and the “location”.
A short story of how I got diagnosed : late in November last year I got a cold, since I recovered from that I noticed that I still have a sputum every 2 or 3 days, the first time of this kind, so I went back to doctor in January, the first Doctor said it looks like a Pneumonia and I should take IV drops, I should stay in hospital for several days. I was not ready for that, I needed to prepare to have few days off. In the meantime COVID-19 show up so I don’t want to stay in the hospital anymore. I went after 2 weeks to see another doctor because I was afraid to leave the problem unsolved for long time. I got a CT scan again and blood test, they only detect a small infection, I was already feeling better. She prescribe me 4 pills of antibiotics for 4 days and if the problem persist to go back. The sputum disappeared, I was feeling very good, but after 10-14 days the same problem came back. I went back to hospital, another doctor, another CT scan because the last CT was kind of old, she said the medicine worked good on me, but probably I need more then 4 days, she gave me antibiotics,8 pills, for 8 days. she also add some syrup and something for bronchitis. This time it did not worked so good. Went back after 14 days, the problem was not solved, I was still a light smoker in that time( 2-3 cigarettes / evening together with 2 small beers). When she saw me she was pissed off, "how is that possible to come back again with that small infection? she asked me if I smoke and she said I should quit meanwhile I take the treatment, so she gave me the same for 4 days more. I quit smoking, no beers, I took the medicine, felt much better but the sputum did not disappear. Went back to hospital 6 days ago, another doctor, he saw my scan and listen of this story a little bit. Then he noticed a scar on my lungs. The scar is from a Tuberculosis (TB) that i got infected when I was in University (15 years ago, I don’t know how I got such disease meanwhile is almost eradicated) but I suppose my lungs are the most sensitive organ of my body. Then he zoom in the CT scan again and diagnosed me with BRONCHIECTASIS. He explained to me what is happening inside my lungs, why I have the sputum.
I agree, we need to make a lot of research by ourself to help us out dealing with this condition. I also think the USA websites are the best for getting more information. I am not sure why. I also checked British Lung Foundation which is also very helpful on this stage of my research.
Thank you for your suggestions about what I should ask the Doctor next week. They are really helpful, I will come back with an update.
Right now I am living in China, the situation where I am was never bad because of the COVID-19, no confirmed cases in my area, and less then 100 cases in the metropolitan area where we belong to. There are no restrictions, the schools are not open yet, they will start in a few weeks, people still wear masks in supermarket, offices, etc. I hope life will go back to some sort of normality as soon as possible in other corners of the world as well.
thanks for your questions list, I will ask the Doctor about them and come back with an update.
Happy to hear your treatment is having good results. Stay well.
thank you for your advice, and for your suggestions. 77 and still here ? lol
after I got the diagnostic and read about the condition one of the first things to google was " bronchiectasis life expectancy". there is no answer however.
I will check with the doctor all your suggestions and come back with an update. thanks again.
Thank you so much for your suggestions, they are really helpful. I will check with the doctor and come back with an update, I will pay attention to the chemicals, perfumes, smoke, dust, pollens and mold as much as possible, I will also check about the laundry products, great advice. thanks again
thank you for your suggestion. I will keep it in mind when I will get to the treatment information. I read a little bit about various treatments, I think there is no one size fits all. many patients suggest that constantly steroids and antibiotics don’t work as good as other ways. For the moment I think to exercise every day and a healthy diet it’s a must.Thanks again
Thank you for your suggestions. I will ask about a sputum culture test, I think is very important , i read a little bit about colonized pseudomonas but I need to make a lot more research. First I should see some test results of the sputum. “Everyone’s BX is different” totally agree, that’s why this place it’s so helpful, we can receive so many suggestions that worked for other patients.
Thanks again, I will come back with an update.
Thank you for your message. One thing I need to learn is to do the chest clearance exercises.
Right now I have a spout every 2-3 days, without too much efforts. I feel is accumulating and then a short cough and I spit it out. I checked some youtube videos about the chest clearance exercise, it’s not so easy to catch the technique, I need more practice, I think someone in person to teach you will be much better. Thanks again keep well
look for more videos on clearance technique. Yes, if you can get a trained person speaking a language you understand to teach you in person, that is best. This is why i do NOT suggest you order an Acapella. Someone has to set it specifically to your situation, then teach you what it feels like to use it properly. But maybe clearance isn’t such a big issue for you yet. You are young so your mucus probably tends to be thinner & more easily moved.