Navigation

14 years and still uncontrolled

Hey guys 😁 so I'm brand new to this group but I'm looking to see if there's other people out here that have also been labeled "untreatable". 

I've had asthma for 14 years and while it changes, it never leaves. I've been on dozens of inhalers, daily steroids for years, allergy meds and shots, as well as being tested hundreds of times. It seems they've tested for everything. They've shoved things up my nose, into my stomach, they've scanned my heart and lungs with more machines then I can count. So far, they just call it "unmanagable asthma". 

I'm at a point in my life that I'm exhausted. I'm a single mom, I've lost my jobs due to asthma. The doctors all act like I'm crazy, like I shouldn't be so sick because I'm 27. Lately my face and arms have been numb, my head is dizzy, and I'm exhausted. Does anyone else have these problems? 

Any advice is greatly appreciated. Today in the ER a doctor told me if I'm not sure my life is threatened from my breathing then I should "get used to it because this is how your life is". I know I can't be the only one that's being ignored and struggling. I just don't know what to do anymore…. sometimes it feels like these drs are just waiting for the big one. 

-Kat 

12
149

Comments 12

  • Shea

    Kat, 

    Welcome to the forum. I am so sorry to hear about your struggles, but you are not alone. I am now 33 and I feel like an 80 year old sometimes, and I am also a single mom and care for an energetic 6 year old son. 

    I also have a somewhat love/hate relationship with doctors and medicines, but I have found a balance with them because I know I cannot manage without them right now. 

    I also was able to qualify for disability after I had a heart attack at the age of 27 from allergic inflammatory blood cells called eosinophils surrounding my heart and choking it. I was hospitalized for two weeks and finally given a diagnosis (yay and boo) of churg-strauss syndrome, a rare chronic allergic disease that affects lungs (asthma), small blood vessels (vasulitis), skin (uticaria), and other organs, and can be deadly when not treated. Thankfully the hospital doctor (love) recognized the disease, confirmed it with heart biopsy, and treated it aggressively with high dose steroids and a chemo mefication called cytoxan. The former doctors I had never informed me I had extremely high eosinophils in my cbc labs, nor did they refer me to specialists who may have identified it before I nearly died from it (hate) nor did they tell me a medication they prescribed me called singulair is increasingly being correlated with people developing this once very rare disease. 

    Now I see an immunologist (my favorite type of specialist), and I am able yo manage on daily prednisone at 20mg, along with nebulizers and inhalers to help control the asthma, and I am very aware and practice strict avoidance of my allergic triggers– which are mainly cat and dog dander. I do not live with any furry or feathery animals, I dont go in homes with them, and no one eho owns them comes into my home, because even secondhand dander triggers my whole disease. 

    It was hard to qualify for disability– it took 2 rejections and me and lawyer going to trial, and my doctors records and tests– especially the lower heart function-' is what tipped the scale in my favor– because I could NOT work, especially without making my health so much worse. They do not like giving disability to young people. 

    So enough on me, back to you! When did your asthma start? What specialists have you seen thus far? Have you had allergy tests done, or do you have any guesses to allergic triggers and/or chemical triggers for your asthma? Do you get relief from certain medications or inhalers? A diagnosis can be a blessing and a curse– but I totally get being annoyed not knowing what is going on– I have been there struggling alone, with a poor medical team, no support, and it is horrible. I think you can make it through that and find out more about what is going on– it might take detective-work and some changes in help, but I certainly think it is possible. 

    We have a great group of people on the forum too and they have been very helpful to me, and if you stick on here, you will get so much gteat help and empathy from them too!

  • K8sMom2002

    Welcome, Kat, and hugs on the ER trip and what the doc said! How are you feeling now?

    You'll find yourself in good company here. Many folks have similar struggles, and unfortunately they've been told insensitive things like you have been told.

    Shea has some great thoughts and good questions. My own doc has talked about asthma being a whole lot of moving parts with tipping points. What have you been able to do that has given you any relief?

    It sounds like you've seen a great many specialists over the years. Have you thought about a place like ? It's been rated Number 1 in Respiratory Care by US News and World Report. And if Colorado is too far for you, then you might think about other highly ranked hospitals that are closer to you. 

  • Brenda Silvia-Torma

    Hello @Kat, I'm so sorry that that doctor told you that that is just how life is now…that's horribly insensitive and just wrong.  

    Do you know what your triggers are? For me, I have trouble with air quality/pollution and when I'm sick. And, do you have an asthma action plan?  Here are some resources that might help:

    • The Asthma and Allergy Foundation of America (AAFA) is proud to support , a program created to help guide patients and their caregivers in managing uncontrolled asthma caused by allergic triggers in everyday life.
  • Kat

    Thank you all for your support and comments, it's very nice to have other people that understand the struggles of asthma. Recently I have been tested to rule out pulmonary hypertension as well as vocal cord dysfunction. I've been told my allergies are only to dust so I do take all the precautions like the covers limiting types of things in your house like blankets and stuffed animals Etc, I also did allergy shots for 2 years and that changed my asthma dramatically. I'm currently searching for a new pulmonologist in my area and I think I will have to go to Portland OR Seattle to get clear but that's not that far. It seems that the only medications that keep me pretty stable are daily doses of Prednisone and nebulizing treatment. The problem of been having the last year is that my asthma is not persistent enough to be kept in the ER for weeks like it was before, however it's also not treatable and after leaving the ER within 4 hours I'm back in the same condition I was when I entered. I'm hoping that finding a new pulmonologist and creating another action plan like I used to have will get better. If I can't find a pulmonologist up here Colorado is not too far and I heard they have a really great Amphitheater at Red Rocks. Thank you all for taking the time to reply to me. Even knowing I'm not alone while in my twenties with asthma and trying to get by is enough to give a little relief.

  • Melissa G

    Kat, welcome to AAFA!  

    Sorry you are having to look for a new pulmonologist. Can your PCP give you a recommendation? I hope you find one quickly. 

  • K8sMom2002

    Sounds like a plan, Kat!

    I definitely like Melissa's plan for asking your PCP and branching out to larger cities. You're not alone … we're here for you!

  • mandyg730

    Hi Kat, late to the game but I just wanted to tell you that I'm 28 with asthma that is currently uncontrolled and a really uncertain medical situation, and it super sucks. I feel for you and I'm sorry you're having to go through all this. 

  • K8sMom2002

    Hugs, Mandy — I hear you. One thing I CAN say … it doesn't feel quite as badly when I have company! Used to, I would think, "Gosh, am I the only one who can't just use an inhaler and be instantly better?" It's what I call #movieasthma … because people in the movies portray asthma as cured with one puff of an inhaler.

  • Shea

    I love all the links and advice everyone posted– it certainly is helpful for me to regularly be in contact with others with allergies and asthma, just to kinda remind myself, hey this is real and something is causing it, and some things are helping it– and I have altered my lifestyle a LOT from what I did pre-asthma/allergic disease, and it was not overnight, but a long progression of baby-steps, both successes and failures, and er visits and prednisone bursts and tapers too, but I see some progress (I want more and faster progress :/)… But I always remind myself I have come a long way. 

    And it sounds like you have too, that is great that you know your dust allergies and take the percautions, use the zippered encasements and weekly hot water wash and all that (heck that part is easier said then done too– I am always washing, dusting, cleaning it seems!)

    I know what you mean about it seeming prednisone is the only thing helping and once you are off everything gets bad– I did so many attempts to get off prednisone but with my disease I have had to just get to a maintenence dose of 20mgs and stabilize there because I was not doing well constantly swinging up and down on prednisone. And nebulizers were the only thing that worked for me for a long time too, although now I use combivent and flovent inhalers mostly and add nebs as needed. 

    Good luck on finding a good pulmo and making an action plan! Hopefully having a doctor you can call and say "hey im in the yellow, I am wheezing, I just did this neb but I think ill need to see you and get a shot in the butt and/or have you call in a prednisone with taper" or "i want to try out this", "what is out there that's new"… Is just good to have that doctor and plan, and can sometimes reduce ER visits too. 

  • K8sMom2002

    Kat, how are you doing now? I hope that you've managed to stay out of the ER and that your breathing is at least a little better now!

    Shea, being able to talk with your doc as a team member is so helpful. It can make all the difference in the world.