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Need some help and support

Posted , 8 users are following.

loveyourlungs
loveyourlungs

Hello all, I often read this forum, but now I decided to tell my story as I have been very down lately.

I have a very complicated story. I am female, 29 years old. Been diagnosed when I was 24, after a serious of wrong diagnosis and “bronchial asthma” since 2010 (only lately I found out I never had asthma).

Then my condition was getting worse, my pulmo changed meds, but nothing seemed to help. Asthma flare ups got more freaquent, mecidine - less effective every time. I was about to give up... but then I decided to change my pulmo. She immediately said I had no asthma as my tests were not showing it. She did a bronchoscopy, a CT scan and got my diagnosis - mild bronchiectasis. But it was weird then - she said there was nothing I could do, just try not to get ill??? I decided to change doctors again.

I found this surgeon, a professor that specialoze in BX. I contacted him and asked for help. Also, I read surgery sometimes is an option. So the professor took me in, performed another bronchoscopy (as, according to him, the previous one was not done properly), washed my lungs and confirmed I had a super mild case of BX. He urged me to get off all of the meds as they were not needed and go back to him in case my lungs start bothering me again.

So I lived my life for 5 years. Had no chest infections since 2013! Got flu or cold a few times a year, but never anything in my chest. Felt healthy! In spring of2017 went to the surgeon again, he checked my lungs and said everything is perfect! Until...

Until December 2017. I developed cold and started coughing. My GP diagnosed me with bronchitis. I panicked. Did it mean my BX came back??? After a few weeks of coughing and not being able to live my normal active life, I visited the surgeon again. He did bronchoscopy, CT scan and this is where it got weird.

The radiologist whp performed the scan wrote: no abnomalies, no BX in both lungs. My surgeon said: she just probably missed it. So I decided to see another doctor. I found this lung professor, showed him my tests, CT scan, he said: no, no bronchiectasis. So weird! I went to the surgeon again, bu he said: no, I see a very mild case!

So I decided to get a 3rd opinion. As I needed to know how to live my life: like I have BX or like I don’t. So I went to a 3rd professor, also a surgeon, but in my country it seems like surgeons know about this disease better! Weird also, but some of the pulmos I tried did not even know BX! Or how to treat it! Anyways, this 3rd professor looked at my tests, I went to him because he is the best in my country and he was recommended by other BX suferers. He said I have some changes in my lower lobes that could be considered as very mild BX. Also, that I probably had it since childhood and I have not yet developed a so called bronchiectasis disease. Basically, as he explained, changes my lungs are so little that they should not be a big problem for me, this is why I had not had an infection for 5 years. It just means I have  a weak spot and I should keep in mind not to run in winter time, etc. And that I shouldn’t worry, as this kind of BX is not prone to progress. I was so happy! I finally started sleeping at night. Weeks passed and my lingering cough went away, my health was perfect again. BUT

Last week I got flu, 39•C, really bad case! Of course it went to my lungs... my GP prescribed me anthibiotics again as she suspected another bronchitis. I want to her after 4 days, she said my lungs are clear and the caugh is from sinusitis. And I got really confused.

Was it sinusitis? Or was it so called flare up? But if, according to docs my BX is so mild, how come I got second bronchitis in 2-3 months? I am really confused. And depressed. I feel like this time it’s not going away and I am stuck to feeling like this for the rest of my life. Is it possible my BX progressed in only 2-3 months?

I know my story might seem weird, but I am really scared. I think of the worst possible scenarios. And I get down and feel alone.

Sorry for my long post. I hope you all are feeling better than I do.

0 likes, 36 replies

36 Replies

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  • Guest
    Guest loveyourlungs

    Posted

    Oh you so have my sympathies. 

    I also have mild BX, diagnosed after faffing around for a few years attempting to treat 'persistent coughs'. 

    I don't know if it's the same with You or not, but i did/ do struggle  with being Most Of The Time

    pretty much symptom free and feeling that of course i can carry on perfectly normally and almost don't believe that i've got anything the matter at all.

    BUT THEN, every year or so it all comes crashing down and without a BX diagnosis i would be back on the diagnostics route with all bells loudly ringing. Oh-my-good-grief this is the second lot of antibiotics, i've not been out of bed for over a week, appear to have lost over a stone in weight as my body doesn't like those antiBs and i sleep all the time. For me it's a bit roller-coaster and i did not fully appreciate that, until i joined all the forums going and started to really listen to what other people were saying.

    Then i'd be well for ages and think i didn't need to keep in touch.

    Big Mistake!

    Back to the forums i go again!

    Sanity restores with good humour, expert peer-to-peer advice, hints and tips and a bit of tlc (which drs are not paid to give us!)

    tbh.....i do wonder if it's that roller coaster of emotions that Can just UTTERLY drain us?

    Certainly for me, depression paddled round the edges of my life and it all got occasionally grey and a tad blank.

    Questions of identity arose as well. It's easy to think about what i can't do....but then again there is plenty that i Can do. 

    Last word from me ( ...sorry, this turned out long!).....remember that Everyone's experience of BX is different. We almost have to learn how to 'read' our symptoms and work out ...for ourselves...what we do and what we don't. 

    and that whole learning how to live through the bed or the sofa-times...

    Every blessing. 

     

    • loveyourlungs
      loveyourlungs Guest

      Posted

      I read your post and I feel you as well! You put in words what I’ve been thinking. Do you mind me asking how old you are and for how long do you have BX? Do you get infections often? This rollercoaster thing... i also forget I am ill when I don’t have symptoms and then an infection happens and I do panic... I read a lot and then only remember the negative things: progressive, symptoms may change, my couse other ilnesses, may need surgery, may need surgery when it’s too late, symptoms all the time, etc etc etc. And I concentrate on these details and can’t seem to move forwards. Like now.
  • ida44484
    ida44484 loveyourlungs

    Posted

    The greatest peril of misplaced worry is that in keeping us constantly tensed against an imagined catastrophe, it prevents us from fully living.

    - Seneca -

    • loveyourlungs
      loveyourlungs ida44484

      Posted

      This seems so right for my worries. Thank you, I need to think about this.
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