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I don’t have asthma!!

I don't post often, but wanted to share this update. This comes as a complete and utter surprise to me!

The last week of February I spent at National Jewish Hospital in Denver for a complete pulmonary work-up. I have never been through so many appointments and tests in so short of a time before! It was quite exhausting both physically and emotionally but I found out some very interesting news.

First, I passed the methacholine challenge which they said is the only true test for asthma. So no asthma! I've been treated for asthma my whole life so … ?!?!!

I DO have tracheobronchomalacia, which I've learned is a collapse of the trachea and bronchi upon exertion, laying down, and coughing. This is progressive and irreversible which is not good news for me. However, it explains so so so much in terms of my symptoms and seeming resistance to treatment from steroid inhalers.

I write this to those of you who feel like none of the inhalers are working and your asthma is uncontrollable, or you feel like there must be **something** else going on with your lungs but your doctors seem to be stuck on the "Oh you just have asthma" line. Don't give up — be an advocate for yourself and follow your gut. It is worth it.

Blessings,

Jenny

 

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Comments 8

  • LK

    Jenny,  Oh, wow!  That sure must have been a startling discovery to find out it isn't asthma after all this time!     

    Glad you had a very complete workup and now know what you are dealing with.  

    I was just reading about tracheobronchomalacia since I have not heard of it before.  Saw this on the Memorial Sloan Kettering website.

     

    Are any of these treatment options available for you?

    Want to wish you and your doctors the very best of luck dealing with this new piece of information!!  

  • jtomotaki

    Hi Lisa,

    I have been told that the surgical treatments are reserved for the severe patients — at a 90% or greater collapse. Mine are 65-70% right now.

    I'm supposed to wear a cpap whenever I am reclining or laying down, always have my bed raised 4-6" so that I am never actually laying flat, avoid respiratory infections (!!!), and follow pretty strict exercise guidelines. They have advised me to exercise just under the point where a cough or shortness of breath would be triggered. That makes me feel like I am 100 years old because I still think of myself physically where I was going to good runs around the neighborhood two years ago and I can't do that anymore.

    But those are all things I can do, and I am thankful to know that it is real and there are measures to try to prevent progression.

    Jenny

  • Shea

    Jenny, I totally understand the relief one experiences when correctly diagnosed (especially after years of being misdiagnosed and disease mismanaged!)– even when bad news comes with it, it is still better than being misdiagnosed or unknown or not believed– so I am happy for you that you know what is going on and are on a better treatment plan for the issue at hand. With these new strategies and with better understanding of the problem, the solutions and good progress will begin!

  • K8sMom2002

    Jenny, wow! National Jewish seems VERY thorough! Hope you're getting some much-deserved rest.

    I'm sure you're having to wrap your head around a lot of things right now, but it sounds like some of the good lessons you learned when you were managing "asthma" will still work — avoiding triggers, avoiding respiratory infections, etc … 

    Have you seen any improvement now that you know what triggers the worst symptoms?

  • Marie E Natzke

    Jenny glad for you it's not asthma but sorry to hear you still have a problem. It's always better to know for sure what you are facing so you can do the right treatments for it. 

  • Melissa G

    Jenny, that had to be shocking news! I am so grateful you now have the correct diagnosis! Sending you lots of hugs and prayers! 

  • Breatheeasy

    I remember reading about how this condition could be misdiagnosed as asthma. I am wondering what tests did they do to confirm the diagnosis?

  • jtomotaki

    @breatheeasy They did several tests. The primary diagnostic ones specific to TBM were a dynamic CT (which captures images during a rapid exhalation) and then confirmed by bronchoscopy. They also did a barium swallow, manometry, 24hr impedance, and an EGD — all of these, in my case, confirmed vocal cord dysfunction, esophageal dysmotility, and celiac disease but showed I do not have any reflux/GERD. What is curious is both the pulmonologist and GI felt sure that I had reflux due to the sheer amount of fluid found in my lower lobes!! I am not what to think about that now. I have a follow-up conference with the NJH pulmo in about 6 weeks. He will give me all the final results and further recommendations then. Oh sand one other test was the methacholine challenge which ruled out asthma in my case.