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New to Asthma, still short of breath

Hi everyone!  Last August I was dx'd with asthma, first time ever.  Adult onset, at 59 years old. I think I had it as a very young baby, and after we moved to a very cold climate it went away, at least as far as I knew.

I went to the doctor because after 3 weeks of increasing shortness of breath, as well as increased wheezing, I found I was really struggling.  To do anything.  I thought maybe I had pneumonia!  But nope, my dr said I had asthma.  They gave me 2 nebulizer treatments, wow I felt a bit crazy after that, in fact I told my husband that I thought I would run home alongside the car!  They sent me home with a prescription for prednisone, I think it was for 5 days.  Those were the best 5 days I've had in years!!  So much energy!  Then it wore off… I was also given a rescue inhaler, and then after the spirometer test they also put me on Qvar.  Six weeks later no better, in fact I had to go to the ER on Thanksgiving for shortness of breath when my inhaler just wasn't helping enough.  Nebulizer treatment there.  Another dr appt and another round of prednisone, but nowhere near as "fun" as the 1st one.

They switched me to Advair from the Qvar, as there was a COPD component… not sure what they meant by that.  The Advair is better than the Qvar, however I still get short of breath upon any kind of exertion.  I haven't even tried to go back to the gym yet, I get short of breath just walking up the stairs, picking up our small shih tzu, walking up the driveway partway.  I guess I'm wondering, is this it will always be, will I always be short of breath like this, or should there have been more improvement.  

Still so very new to this so any help or advice is greatly appreciated!

Terry

 

 

 

 

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  • Melissa G

    Hi Terry! Welcome to the AAFA forums!  So glad that you found us. 

    You have had a rough time. 

    First I would suggest doing our free online . It has a lot of great information on Asthma basics. 

    Did your dr give you an  Have you figured out your

  • Emelina

    Hi Terry, 

    welcome! A few thoughts for you: 

    – have you talked to your doctor or pulmonologist about your persistent shortness of breath? Sometimes it could be due to undertreatment of copd/asthma, but other times there could be other things that need to be addressed (heart, other lung issues)

    – have you gone to pulmonary rehab or worked with an RT? They can ensure you have good inhaler technique, teach breathing techniques and help with an exercise program. 

    – it sounds like they switched you from qvar (inhaled steroid only, great asthma treatment) to advair (steroid plus long acting bronchodilator, treats both asthma and copd). Sometimes people have just asthma only (airways are inflamed and spasm) or asthma + copd (chronic bronchitis and or emphysema where the air sac walls are destroyed, and a person’s airflow obstruction is only partly reversible with rescue bronchodilators. I would strongly recommend chatting about your persistent shortness of breath because there are more medicines out there and sometimes it takes time to find the right combo. For example, sometimes patients also take spiriva which treats both asthma and copd.

    good luck! Em

  • TerryD

    Hi Melissa and Em!

    No, I do not have an action plan, I did ask my dr if I should have one of those peak flow meters, he said no, there weren't really of any use – is that true?  And no, I really have not been able to identify any triggers yet.  Maybe rain.  It seems like sometimes I wake up and can feel the heaviness, and tightness, and then notice the sob walking downstairs.

    I haven't been back to the dr's for a follow-up since going on Advair, but I do need to schedule an appt.  I don't have a pulmonologist, do I need one?  And I did have someone go over inhaler technique with me, which was all good!  I had youtube'd how to use them   My spirometry results indicated partial reversibility, but I haven't talked with my dr about that, they just changed my med to Advair, from Qvar.

    Thank you for your responses and info, Melissa and Em!

    Terry

  • Emelina

    Howdy Terry, 

    peak flows are used a lot in kids and moderate to severe asthma. I’d say about 50/50 of primary care use peak flow monitoring; the same goes with action plans. I think this speaks a lot to how different care is across the country, provider to provider and level of doctor comfort with caring for asthma/copd patients. I’d suggest talking to your regular doctor about the benefits/drawbacks of going to see pulmonology. I highly recommend having a dedicated lung doc – some people may go once a year just for a check in and only if things get out of hand. I think it’s important to ensure you have the right diagnosis and are on optimum therapy especially when diagnosed later in life and still very symptomatic. 

    Personally, I think everyone with asthma needs a peak flow meter and an action plan. My flows can tell me early when a flare is coming and help me take corrective action to avoid a really big exacerbation. And it’s a good way to put an objective number to how you are feeling. 

    It is a good idea to keep an asthma journal when newly diagnosed – whenever you need to use your rescue inhaler or become wheezy, record the day/time and any triggers (cold air, viral infection, eating, pollen, smells, dust, pets, etc). As that asthma class will teach you, part of the treatment plan is avoiding triggers to prevent symptoms. 🙂

    One thing you can do is ask your doctor to walk you through your pulmonary function test and ask him/her to explain what the numbers mean and how severe your lung disease is by the numbers. It will also help you understand your tests the next time you get them to see how you are doing. Hopefully Debbie will see your post and respond. She also has the asthma/copd cross over combo. She is a wealth of info on living with both conditions. 

    Best, em

  • Deborah Bartlett

    Popping in for a quick visit! Hello Terry! I am Debbie Bartlett. I am a CT state captain for the COPD Foundation.I have COPD and severe persistent asthma. I was diagnosed with COPD about a year before the asthma. My asthma has gotten worse as time goes on.

    Looking forward to chatting with you soon. Have a nice day! 😉

  • TerryD

    Hi Melissa!  I've had the spirometry test done, but they didn't put the clothespin thingy on my nose   The results indicated moderate obstruction with partial reversibility.  My doctor mentioned COPD likely, so I guess I have that crossover; asthma w/copd.  And that's about all I know!  I've been on Advair, along with a rescue inhaler, since February.  Not had a follow-up yet since switching to Advair.  And, truthfully I've not noticed a difference other than I don't need my rescue inhaler every day, 4-5x daily.  Just maybe once, twice a week.  Particularly when it rains.  My chest is usually tight, some days more than others, and I still get short of breath upon almost any exertion, even picking up one of our small dogs.

    Honestly, I don't know if this is how feels when you have asthma, or I still need tweaking of medication.  And I just still cannot BELIEVE that I was diagnosed with asthma at almost 60 years old!!  Boo!!!

    Terry

  • Shea

    Hi Terry! I found allergists and allergy tests to particularly helpful. Some asthma is allergic asthma, and a skin prick test done in an allergists office can often give you a big heads up on what triggers your asthma and help identify the type of asthma (  if your asthma is brought on by allergies (allergic asthma) or a different phenotype of asthma), which will help you in both avoidance strategies (to lessen meds) and in treatments (getting the right/best meds).

  • Emelina

    Terry, 

    you might really like the online asthma care course that AAFA offers. It’s a really good overview of everything asthma (what it is, action plans, communication, drug types, triggers). With well controlled asthma your symptoms should be minimal (rescue use < 2/week, no ed/hospital stays, rare nighttime awakenings). Seems to me you still need some tuning up with your meds. When is your next doctors appointment? 

     

  • TerryD

    Hi Em,

    I did go through the slideshow of the various subjects, excellent and very informative!  Thank you for recommending that earlier.  I don't have a next dr's appt, and I think that is what I'm not sure about; if I need to back in for follow-up or if this is what it's like living with asthma.  Always short of breath, chest tightness and tired.  I just want to be able to breathe better so that I can go back to the gym, and I know at this time I would not be able to do the work.  But, is this how it will always be?  I don't know anyone with asthma, so there's no one to ask these questions of, and then I found this site!  So I'm hoping to hear back on what it feels like to live with asthma.

    Thank you again, Em, for all your advice

    Terry

  • Emelina

    Hi Terry, 

    I’m glad you checked out the class. I’d say, and hopefully others will chime in, that a check in with your doc would be great. Usually when a new diagnosis and meds are started, docs should keep you on a short leash and follow up in 6-8 weeks to look at side effects and how you are feeling. But big picture, unless you fall into the severe uncontrolled group, you should not continue to feel short of breath all the time and tight and tired. Ideally, with the right meds, you should feel close to how you did before your lung troubles cropped up. Best wishes, Em

  • LK

    Welcome Terry!    

    I am so glad you found us but sorry that you had reason to find us.  

    I have adult onset asthma and am in my mid 50s so I totally understand the feelings of "what in the world is life with asthma going to be like?" , "Will it ever get better or is this what I have to deal with forever?"  and many other questions.  

    Yes, it will totally change your life and there is a lot to learn about triggers, what medicines will help you breathe better, and many other things.

    Perhaps the most important thing is to ask your doctor when you do not understand something.  At first I didn't want to bother him but I have learned from other here on the AAFA forums that if I do not talk with my doctor then he assumes I understand everything.  

    One thing for me is that when I have had an asthma flare ( also called and exacerbation or attack) it takes my lungs weeks or months to recover to where they aren't super sensitive.  In other words they react to many things that they normally would not react to.

    I have severe persistent asthma so my story may be or may not be similar to yours, but remember that you will get better acquainted with what your asthma is like as you ask questions of your doctor and learn about it.

    It is very important to keep your doctor informed about how you are doing.  My pulmonologist sees me every six weeks if I am starting a new medicine or having trouble with my asthma.  

    I know it takes time for all this to sink in.  When I was first diagnosed just over six years ago, I had not clue what asthma was like.  I knew a few people who have asthma but their asthma was resolved with only a puff or two on their rescue inhalers.  I am on several asthma maintenance meds and also two acid reflux meds since reflux can aggravate asthma and vice versa.

    I started with my primary care doctor taking care of my asthma but after a short time, I asked for a referral to a pulmonologist since my breathing wasn't improving and he was running out of ideas for how to treat me.  Even after seeing the pulmonologist, it took, and is still an ongoing process, some trial and error to find the medicines that work best for me.  Each person's asthma is different and it takes time, patience, open communication between patient and doctor and work to figure out how to treat asthma.

    Hope this helps some and please talk with your doctor and let us know how you are doing!

  • LK

    Another thought for you, Terry,

    It is easy to fall into the trap that you just have to deal with the shortness of breath, tightness in the chest, and other asthma symptoms but you don't for the most part.  With the right asthma medicines for you, you can greatly reduce those symptoms.

    Also,  I think you said that when you had the spirometry test you did not have the nose clip?  Hmm, that is odd.  If you do not have the nose clip on when you blow and inhale then the reading is not accurate because you are possibly breathing in and out through your nose in addition to your mouth.  The machine is just sensing the air that is going in and out of your mouth.  Worth asking your doctor about.

    Guess that was more than one thought!     

  • TerryD

    Omg, thank you, Lisa!!  So many questions answered!  So, I was dx'd initially with mild intermittent asthma but after the spirometry test and non-response to Qvar, along with an ER visit on Thanksgiving with an O2 level of 86, using my inhaler at lest 4 times a day for weeks, they changed my dx to moderate persistent.  And changed Qvar to Advair.  With my rescue inhaler in my pocket   I don't have a pulmonologist, still seeing my primary care physician.  Whom I hate to bother with questions, and, well, I just don't know what "severe" truly means.  I think I have actually had mild asthma for years, I've always struggled with breathing with all the sports I was involved in as far back as high school.  And, if I also have some degree of COPD, maybe this is just what it feels like.  And why am I hoarse all the time now, is it from the Advair?

    I'm so sorry, I see that my writing is all over the place, which is how I feel trying to figure this all out!  However!  I know there are people living with far worse asthma symptoms than mine, I think I'm just trying to find, in the end, if I simply need to accept that this is living with asthma/COPD, or I really do need to revisit my medications with my dr, or, a pulmonologist?  What has to happen for a patient to be referred to a pulmonologist?

    It's crazy, I never get the flu, I never get a cold, no sinus problems, I do have seasonal allergies but mainly just eye symptoms – itchy, I've been so lucky to have for the most part enjoyed very good health.  Once I had Norovirus, sickest I've ever been!  

    Thank you again, Lisa, for sharing your story and your advice

    Terry

  • LK

    Good morning Terry!    

    Please don't worry about your posts being all over the place.  We have all been there!  That's just the mind trying to sort it all out. It will get better!!

    I wasn't diagnosed until about 6 1/2 years ago but I had had a chronic cough for at least several years but I attributed it to my working with horses and all the attendant dust from that and the riding arenas.   Seems it was more than that.  

    I certainly hear you on hating to bother your doctor with questions.  I have always been, or at least thought I was    ,  pretty much able to figure out most things and deal with them.  My DH may disagree though!      So it's hard to make yourself call often but it is necessary whenever you have questions.  There have been times when I have had to call several times in one day and sometimes several times a week.

    The thing about a new medical challenge like asthma is that there are so many variations that you and your doctor have to really work at figuring out what kind of asthma you have, what your triggers are, and which medicines work best for you.  Some medicines work for some people for a time and then their asthma changes and they need to be put on other medicines.  

    "Life with asthma" is something that takes some getting used to and before I found these forums about a year and half ago, I was so lost.  I hadn't met anyone else who had severe asthma.  It is so refreshing to discover that others are dealing with all the difficulties that asthma brings.

    From my own experience, most primary care physicians, even the really good ones, just are not familiar with severe asthma so it is important to see a specialist – either a pulmonologist or an allergist if you have allergic asthma.  You would ask your primary care physician to give you a referral to one of these specialist.

    The question about hoarseness would be a good one for your doctor or your pharmacist.  Pharmacists are great resources for information about drug side effects and other drug information.  My ENT has told me that my hoarseness is part and parcel of taking some of the inhalers.  Mine comes and goes but I have it worse when I am tight in the chest even when I don't realize it.

    Yes, we do need to accept living with asthma but we still do all we can to minimize the symptoms by asking questions even when we feel like we are "bothering" our doctors or feel like since we've lived this long with it that we should know how to handle it.  It is ALWAYS a good idea to call our doctors when we have a concern about a medicine, how we are responding to a medicine, or if we are doing poorly.

    I have been having a long asthma flare since last fall so I have seen my pulmonologist just about every six weeks through all this time and now when I call his office they know my voice so well that they recognize me just from that.  I have finally come to the realization that my breathing well, or at least as well as I can at this point, depends completely on me keeping my doctor informed about how I am doing.  I hate bothering my doctors but I can tell you that no matter what I call about, they take it seriously and every single time I feel good about having called.  

    We also have to keep close tabs on our asthma especially in the beginning or if we notice any changes in how we are doing. 

    Sorry to be rambling!    So much to say!  

    If I may, I would suggest getting a referral from your primary care doctor to a board certified pulmonologist or a board certified allergist.  I think there is a link somewhere on the AAFA website.

    Hope this helps some.  You will get this figured out!

  • LK

    Terry,  You asked about peak flow meters.  For me, they don't really how I am doing because even when I am so tight that I only have enough air to get one word out at a time my peak flow numbers are still pretty good.  My pulmonologist is good about looking at my peak flow numbers and also listening to how I feel.  Even my doctors say my lungs sound good with no wheezing when I am struggling so it is important that your doctor take all these things into account.

    For others, a peak flow meter gives a very good indication of if their breathing is worsening or not.

    Just saw that you have seasonal allergies so it might be worth looking into if you have allergic asthma.

    Let us know how you are doing!

  • K8sMom2002

    Hi, Terry! Welcome, and I'm so glad you found us!

    Asthma can change over time … and you said a few things that sound a bit like my own experience …

    TerryD posted:

     I think I have actually had mild asthma for years, I've always struggled with breathing with all the sports I was involved in as far back as high school. 

    Terry

    I wasn't diagnosed with asthma until I was in my 30s. But for as far back as I can remember, I thought all people's chest hurt when they ran or did strenuous exercise. I thought coughing was just something everyone did. Sure, my "chest colds" lasted longer than anybody else's, but my mom and grandmother always said that my doctors had proclaimed me as having "weak lungs." 

    So the official asthma diagnosis came as quite a shock. Turned out that all those issues were actually symptoms or flares. I have been diagnosed with , and colds and upper respiratory infections are slam-dunk triggers for me.

    It wasn't until the last few years that I realized that sudden drops in barometric pressure and increases in humidity can really trigger my asthma. I'm not alone … AAFA has a great blog post called .

    Figuring out my triggers took a while — careful journaling of my symptoms and the conditions that were going on when I had a flare helped with that.

    As for a referral to a pulmonologist or allergist, I wish I'd sought out a referral so much earlier — for both me and my daughter. I didn't know at the time that sometimes it's just as simple as, "Hey, I'd like to be referred to a pulmonologist or allergist for an evaluation."

    Other times, depending on your insurance, you can reach out to a specialist yourself without a referral at all. 

    To find an allergist near you, you can use the following two links:

    Could you reach out to your insurance company and asking for suggestions?

  • TerryD

    Hi Melissa    I'm doing well, the last 5 days have been much better, I haven't felt that heavy weight on my chest, yay!    And I have a follow-up with my dr the beginning of June for I guess high blood pressure meds, etc, so I'll talk to her about the asthma/copd current status as well. Thank you for checking in!!  Hope you're enjoying the holiday weekend

    Terry

  • LK

    Terry,  That is great news that you are doing so much better!    Hope you continue to improve.  

  • Melissa G

    Woohoo, glad you are feeling better. Yikes on the high blood pressure, let us know how the dr's appt goes.