New to bronchiectasis and would like advice

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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 

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  • Posted

    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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    • Posted

      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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    • Posted

      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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  • Posted

    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
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  • Posted

    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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  • Posted

    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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    • Posted

      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!

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    • Posted

      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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    • Posted

      Thanks Jess!!

      I think the fact that nobody seems to understand is probably the most frustrating. I know it is for me.  

      I have been just calling my condition “a type of COPD.”  It seems to have helped a little. 

      Well,  please take care!!  😃

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  • Posted

    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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    • Posted

      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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    • Posted

      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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