Very weird bronchiectasis at a young age

[mylungsaresick]

Hello all,

I am a 29 year old female. When I was 24, I was told I have mild cylindrical bronchiectasis. Before that, I had spent almost 3 years being almost constantly ill and all doctors had had a different diagnosis.

Until I got an appointment with a very famous pulmonary surgeon. He performed bronchoscopy, washed my lungs. It turned out my case was very mild and, in his opinion, usually mild cylindrical bronchiectasis does not spread. I manage to stop using any medicine and for some time my health was just perfect. I lived a happy and fulfilling life, since 2013 I had no lung infections, barely coughed a few times. Last April I went to this surgeon again, just for check up and he said my lungs sounded fine, he couldn't hear anything and I was fine, so he let me go.

Until a month ago. I got a flu and after a few days, it turned into acute bronchitis. Coughing came back... I had a course of antibiotics. Everything seemed to be getting better, my lungs cleared, I was still coughing, but it's normal after bronchitis. A few days ago I got another infection. My lungs are fine, it seems this time the infection got my throat and nose. I went to my surgeon again, next week I will have bronchoscopy again and he will check whether my bronchiectasis progressing and if I need a surgery.

I am very scared. I am afraid my cough will never go away... And I am afraid my lungs got more damage over the years even though I felt perfect... And I am afraid to spend my life not being able to move. As far as I read, usualy eldery people get it... And I got it when I was 24. Does this mean I will spend my life coughing and breathless? Can this cough go away again like it was for the past 5 years?

I cannot stop crying today. I am so scared.

[Lealee]

Please don’t be scared, I’m 36 and first started showing symptoms at 32. Most people assume I have low immunity because I catch colds easily and have chest infections. I have an active life and work full time, unless you’re my family or close friend you wouldn’t know I have bronch.

I was breathless a lot before I was diagnosed, since then my asthma inhalers have been changed and I take pills to help my cough and I feel the best I have in years.

Being diagnosed was hard and very upsetting and scary. But from being diagnosed I now have medication that stops the breathlessness, I know how to try to avoid infections, and this group has given me information as well as hope.

A year ago I couldn’t run for a bus without a coughing fit and getting breathless, since the bronch meds I actually ran up 2 escalators and for a train, I was a bit breathless but felt great.

This group has been so positive for me, please ask any questions because someone will know the answer xx

[Matilda_1922]

Hi mylungsaresick

I am a little older than you.

I can't give you any advice as I am very new to this. You say you see a lung surgeon. I'm not sure if you live in the UK or not because I saw a chest specialist. I am being referred to a chest physio to show me how to keep my lungs clear. I've also been given an antibiotic rescue pack.

My bronchiectasis is mild so hopefully with these strategies in place will keep it under control.

As I have already mentioned I'm new to this. I also have Rheumatoid arthritis which the medication I take may have caused this. However as a child and young adult I did have many ear infections and bronchitis. I have had Asthma for many years too.

Hope you feel better soon and your lung surgeon sorts you out.

Have as good new year as possible. At the moment my RA is troublesome had a steroid shot yesterday so hopefully this will help.

Matilda x

[mylungsaresick]

Thank you for all of your replies. They realy made me more positive.

Do you always cough? Does it stop?

I don’t live in the UK, but I followed the community because I figured I can seek help here...

I had no symptoms for almost 5 years. Did not take any medication, lived a very active life. And then suddenly flu turned into bronchitis, I am getting better but it’s 3 weeks and the cough it still here. I am so afraid I will never stop coughing and the disease will just progress. And I will end up slowly dying...

I remember I was scared 5 years ago as well. But aftee bronchoscopy everything turned OK. I forgot I have this. I know it might sound stupid, but I cannot sleep, I wake up from panic attacks, I cannot eat, I feel so down.

I went to a surgeon in 2013, because I wanted the affected lobe out. But then he said cylindrical bx usually does not progress, but I am having a bronchoscopy again next weak.

[Matilda_1922 in reply to mylungsaresick]

I can have a productive or dry cough. At the moment it's quite good. It's my RA that's currently not so good. I had a steroid shot on Friday and now starting to feel it's benefits. I was going for a walk did about 2000 footsteps. Usually 6000 but my daughter called and asked if I would like to go for a drive. She didn't say where but it's a shopping mall so should do more steps there. I'm trying to do 10000

[mylungsaresick]

Today everything got even weirder. My pulmonologist on Thursday confirmed I have no bronchiectasis (he based his decision on a recent CT scan and bronchoscopy) and my diagnosis in 2013 was wrong, maybe my lungs were sick and this is why the results were not clear; and today my surgeon, who was about to cut a lobe of my left lung, confirmed I still have it. Very mild form (almost none) and only in the lower lobe of my left lung. In his opinion, the bronch is very mild and there is no need for a surgery, but I have to come once every year to check. Who to believe? I am confused. I even called my pulmonologist again, he stays with his decision. Borth of the specialists know every well about bronchiectasis and they even wrote a series of scientific articles related to it.... Soooo weird :/