New to bronchiectasis and would like advice

Chest and lungs
1

I was diagnosed with bronchiectasis last January at the age of 22. I like to think of myself being a generally healthy person. I eat well (cut out dairy and alcohol), exercise when I can, and did as much research as I could on my condition.

So I have a few remaining questions and would like to hear from people are are experiencing the same thing:

- It seems like I'm on a roller coaster of living a energetic, healthy lifestyle to staying in bed all day from frequent illness. Do you have any advice for having to put up with this constant pattern or how to stay positive? 

- I'm happy to have found this website but are there any more support groups/people I can meet? I'm not going to lie, it gets kind of lonely when no one you know really understands what bronchiectasis is. 

- I'm a runner and love anything that has to do with exercising. Do you have any advice on how to keep up that? 

- Any other general advice?

Sorry there are a lot of questions. I finally got the courage to reach out and post on here so anything helps smile 

2

Hi Jess,  I am 55 and was diagnosed only two years ago, but like you I have been a lifelong athlete coach exerciser.  Your body will teach you what it needs so listen carefully.    One of the symptoms that lead to my diagnosis was a cycle of going to the gym, running, getting in really good shape, and then getting pneumonia.  So you may have to taper your intensity some, settling for a walk instead of run some days.   If you've been an athlete, I know it can be difficult to distinguish between when you're being a little lazy, or discouraged, versus when you're sick or on the verge of getting sick.  And the sick come so quickly!  Prayer really helps me.  I know it can be scary to schedule out things like trips, because you never know, but I would say schedule them anyway. Give yourself something to look forward to.  Are you drinking at least 88 ounces of water a day? 

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Hi.....I am aerobics teacher...and fellow sufferer....continue doing what you are doing....because moving and exercise helps, however pace yourself, listen to your body and do not push yourself or over do it....take one day at a time Samantha

4

HI Jess

I’m sorry that this is happening. Bronchiectasis is becoming more main stream and people are starting to understand it.

excercise   is so important for this.  It helps bring up the

Mucus and helps get the oxygen going.

I know how awful and tired you feel. 

Make yourself go out and at least walk.

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Check with your local hospital to see if they have support groups,

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Hi Jess !!  

I am brand new to this forum as well.  I am 57 and was diagnosed about 2 years ago. 

In 2014 I had a few bad cases of pneumonia but was given antibiotics which cleared things up at the time but then I developed a bad fungal infection in December 2014.  It was touch & go for 8 days in January 2015 but I made it!! 

I have to say,.... my life hasn’t been the same and I really wish there was an “in person” support group as well as the online support groups. 

At the same time I got the lung damage, I also had an abscess in my back so I have nerve damage and walk with a cane. 

I wasn’t told right away that Bronchiecdtasis was what I had.  I was simply told that I had damage from the incident in 2015. 

Every year it has gotten worse and in the last 4 yeàrs I’ve sent Christmas in the hospital for some medical reason or another.   It’s left me feeling ever so frustrated!! 

I think the hardest part is that I am not very active at all.  I get so winded just getting from our house to the car.  

With all the coughing I do, I feel so embarrassed especially when I’m st the dentist.  I have explained to my dentist many times that I have Bronchiectasis and that I’m not contagious but there are times I think they doubt me. 

Anyway Jess,  it is nice to meet you and everyone else in thd forum too!!! 

LynneB

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Brenda,

Thank you so much for your response! I hate that you have to go through bronchiectasis too but it's so comforting to hear that someone else feels the same way. It's always a bummer to have something like illness slow down the momentum from trying to stay in good shape. I'll definitely keep your advice in mind and I'll pray for you too! This means so much to me - thank you!

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Also you need to find out "what's down there" in your lungs. You need to fondness out  if you have NTM. Can be ascertained from sputum samples. Have your sputum cultured!

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Hi Jess

I am new to the bronch thing. Diagnosed 6 months ago. And have asthma most of my life.

I agree it can be quite isolating living with bronchietasis. In my experience people i talk to, even close family look at me like im talking another language when i want to mention it.

I am astounded that medical advances on this condition seem rather lacking. Ok mucus clearing is important in order to breathe, but I want radical medical approaches to ridding us of this condition, not walking around with chest sweets in my pocket or an acapella.

Sorry im at the bitter stage of this condition so bare with me please.

Jem

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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

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It's only natural to feel bitter Jem, I was born with bronchiectasis and still feel bitter 55 yrs on. It's like fighting a never ending battle and the lack of research in this disease has been disgusting. Hopefully things are changing now as more people are being diagnosed 🤞 xx

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Thank you Lizanne x

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Samantha,

Thank you so much - I really appreciate the advice and encouragement smile

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Lynne,

It's nice to meet you too! I'm so sorry you've had to go through all of this and I wish more people would understand. I wish you the best!

15

Jem,

I'm definitely bitter too, you're not alone! I find it the most frustrating when you mention bronchiectasis and someone assumes it's like bronchitis and something that can go away with treatment. 

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LizAnne,

I heard a lot about the British Lung Foundation and the Bronchiectasis Foundation too. It seems like the UK has a lot more for their patients but unfortunately I'm in the US.

Thank you so much for the advice and encouragement smile 

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Hi Jess 

Thank you for the warm welcome!! I don’t know if its just me or not, it seems like there many newbies on here. We need the senior people eoh have had to deal with this brochiecstatists to share some things that they feel  there is help there. 

Thank you do much for the welcome!!!

Have a happy day Jess!! Anyoneeverwhere??  ❤️❤️❤️❤️😘😘

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Hey Jess! I was so happy to find this topic, thank you for starting it.

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 biggrin) 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.

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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

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Bronchiectasis is rare and some doctors don’t recognize it.

Get an appointment at National Jewish hospital in Denver. Number 1 in the nation for pulmonary diseases. They’ll ask for your cat scan and they will know if you have it or not.

Sounds like you have something including bad doctors