New to bronchiectasis and would like advice

Hi Jess, so sorry to hear you have also been diagnosed with bronchiectasis.

I was born with the disease ( cause unknown ), I can sympathise what you are going through especially being so young. Yeah because you look ok on the outside people don't realise how unwell we get when we have an infection.

It definitely is a rollercoaster, I try to make the most of my "good days" .

I think the British Lung Foundation are trying to get a forum up and running for younger patients. I would have loved to have had access to this when I was your age. I am 55yrs old now but found it very difficult coping emotionally when I was your age. Don't get me wrong I still struggle.

You sound like you are doing all the right things , I agree keep active but listen to your body, don't over do it.

Xx

I am a 29 year old female, got the diagnosis when I was 24. Like for many of us - after a long battle of wrong diagnosis and being constantly ill, I have a super mild form - just minimal changes in lower lobe of my left lung and even less on my right lung. It was very difficult times. 2013 was very challenging for me as I had 2 pneumonias, chronic bronchitis, sinusitis, etc. But then I got better. And had not had a chest infection for 5 years! Until last December. A cold turned into bronchitis. I panicked. I did not sleep at night, was really depressed. Did a mistake - started googling the disease again, reading forums, etc. Got even more depressed, because none of the stories seemed optimistic, most of the people had severe forms and some other conditions (such as asthma or COPD), but I immediately adjusted everything for my condition and I assumed: this is it, I will now be constantly ill and just get worse and worse and worse. This was a mistake.

Anyways, I went to see my doctor who is a lung surgeon and he diagnosed me back in 2013. He did a bronchoscopy, ran a CT scan and told my my condition even got better since 2013, he did not even prescribed any medicine. But I noticed a weird thing: a radiologist who did the CT scan, wrote: no bronchiectasis. So I decided to see another doctor. So I did. He confirmed I have no bronchiectasis. Can you imagine? I was battled. Who to trust? I went back to the surgeon, he said: no, you have bronchiectasis, super mild, but you do! This turned into some kind of an anecdote! So I went to see third doctor ) he confirmed that I do have bronchiectasis. But not the disease, only some changes in my lungs that I probably had since childhood. He also assured I will probably not get the disease as the changes are so minimal, barely visible, and I will be able to live my life fully just keeping in mind my lungs is my weak point. So complicated! But I finally was able to sleep at night. This was in the mid of January.

And last week I got ill again. Got flu and it went to my lungs again. So I got depresses again. I basically have 3 different opinions from 3 different professors. Ok, at least all of them agreed my bronchiectasis is soooo mild, but I am ill again. So what is this: a flare up of bronchiectasis? Or bronchitis? How to know? What to do?

Been googling again, reading all this negative info and feeling that I gave up to confirmation bias. What if this doesn’t go away? What if those doctors were wrong? What if I develop other diseases? What if my bronchiectasis progressed in these 2 months? What if what if what if... I am really down. I life and active life, do many things, cannot be ill... sorry, I feel really down.

Jess, how are you feeling? I hope you are doing better than me.

Lots of good stuff here already.

I'd just add that you can lurk on a number of forums until you decide which ones to join. Just use a decent search engine and put in bronchiectasis and forums.

Everyone and their bronchiectasis is different. ISTM that it's a question of learning what our bodies are doing and adjusting accordingly. 

I'd echo that advice about hydration, especially when episodic.

That roller coaster feeling i can agree with.....either perfectly fine or knocked for six. No joke and very tiring to keep up with.

On line support is totally the way to go. Don't even need to post much ( i don't!) sometimes reading through is enough to get me through a sticky patch.

Best Wishes