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I am so lost…..

I was diagnosed with asthma in May of 2017.  I was also diagnosed with microvascular heart disease the the same time…..I was not feeling well and dr ordered stress test and chest xray!!  Needless to say I was more focused on the heart issue since I was not have any signs or symptoms of asthma.  As of October, I have been having issues breathing and having a lot of coughing fits, many in the morning.  In May I was given a rescue inhaler and told to use when needed.  I have an appointment at the end of December with a lung specialist but in the meantime, I have been feeling so tired.  I went to the local urgent  care a month ago because I had chest pains and could not stop coughing and was given oral steroids and I felt great until the dose was was complete…then tired again.Two days ago I went into my parents garage to try to find where the gasoline smell was coming from and within 10 mins I could not stop coughing until I took 3 puffs from my inhaler.  Yesterday I was so exhausted I could not get out of bed.  Does anyone feel like this?  Is this asthma related?? I feel like I am in the dark!!

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  • K8sMom2002

    Oh, hugs, Shel … you've had a lot to handle since May. 

    Yes, asthma can be like that … urgent care will do in a pinch, but asthma is best managed by a doctor who knows you and knows asthma: a board certified allergist, a pulmonologist, or a really on-top-of-it primary care physician who really knows her asthma.

    For right now, is the medication helping? If it's not, or if you're still in the "red zone" even after taking your meds, call your doctor or go to the ER or call an ambulance. Asthma can get seriously ugly seriously fast.

    A couple of resources that have helped me and hopefully will help you, too:

    •  - part of a new series of short videos that will help you learn more about asthma.
    • The – this was a life saver for me because I could get with my doctor and figure out exactly what I was supposed to do when.

    You are NOT alone. We've been there and we're here for you! 

  • Shel

    Thanks for the reply!!  The Ventolin does help..until my last visit to urgent care I wan really conservative with it, now I use it several times a day!

     

    Shelly

  • K8sMom2002

    Good to know it's helping. Are you on a long-term controller? If you're having to use your inhaler a lot, that could be a signal that you need something that will help your lungs settle down. 

    I'm glad you have an appointment with a lung specialist coming up! Hopefully the doctor will be able to talk you through a good action plan. 

    And ugh on the gasoline — that triggers my asthma for sure!

  • Jen

    Hi Shel,

    Welcome.   Is there any chance you  could call the lung specialist to see if they have a cancellation for an earlier appointment?  

  • Shea

    Interesting diagnoses Shel. Do you take anything or have any specialist and/or insyructions for the heart disease? 

    I was diagnosed with Churg-Strauss syndrome, a rare chronic allergic condition that involves the heart, lungs (as allergic asthma) , small blood vessels (vasculitis), and other organs, and I learned a huge trigger for the entire disease is my allergy to cat and dog dander (after becoming pregnant is when my allergies got really bad, asthma developed, I had a heart attack, and was diagnosed by heart bibiop with this allergic disease, the heart attack was caused by allergic blood cells called eosinophils choking my heart). That was 6 years ago now. 

    I totally get you on feeling energetic when on steroids and lethargic off. I have been stuck on a maintenence dose betwen 18-20mg for the past 6 years, because I just cannot breathe or function lower, and everything becomes inflamed. 

    It is definitely scary when the heart is involved. In my disease, I found an immunologist and rheumatologist, and they do regular bloodwork, specifically looking at eosinophil levels to make sure they never get to the level I had when I had a heart attack.  I went to an allergist to confirm my triggers and now I live in a home with no furry animals. I also have the typical asthma triggers: perfumes, smoke, gasoline, mold which is tough to get used to. 

    Im glad you are carrying a rescue inhaler! I have a nebulizer at home for big attacks, but a rescue inhaler is definitely a life-saver!

  • Shel

    Oh my goodness Shea…that had to be very scary for you!!!  I am glad you have a lot of the issues figured out.  From what I have read, figuring out what meds work and what triggers to stay away from are one of the biggest issues.  I see a cardiologist and take beta blockers for the angina.  Thankfully everything else with my heart is good!  Also from what I have read, microvascular disease is a very tough diagnosis if your doctors are not familiar with it.  I have read where patients suffer for years until being diagnosed! Thankfully the doctor I saw was.  I have learned so much from this site in such a short time!  Thank you all for your info!!!

    Shelly

  • K8sMom2002

    Yay — glad you've learned things, and I'm learning things from you!

    Jen has a great point … you may get a quicker appointment if you call and ask to be placed on the lung specialist's cancellation list. Fingers crossed!

  • K8sMom2002

    @Shel, were you ever able to get added onto the lung specialist's cancellation list?

    Have you recovered from the gasoline fumes?

  • Shel

    I was just to my family dr today and she is prescribing some steroids to get me thru until I see the specialist.  I just learned that my dr has asthma.  It's so nice to know your dr shares some of the same experiences. 

    Yes I have recovered from the fumes…took me a couple days of rest.

  • K8sMom2002

    Shel, that IS great that she understands! My own doc has asthma, too, and she definitely gets it. 

    Are the steroids in pill form, or has she prescribed an inhaled type of steroid? Glad you've recovered from the fumes.

    A really bad trigger like that can set me back, so I'm glad things are looking up. May everything hold together until the end of December!

  • Shea

    Steroids definitely help kick the inflammation out (but they also make me kinda crazy… high doses I always warn people because its like my temper and emotions are running high). Im not sure if youve had a lot of experience on steroid shots/tapers, but it is something doctors dont always tell you aabou, so I thought Id mention it… just to be aware (kind of like when you are pms-ing, and you start crying and rhen your like, oh its just my period, so it helps you deal with it… except prednisone, for me, especually when I was new to it, was much worse). 

  • LK

    @Shel, Hope you can get in to see the specialist sooner rather than later!  I was just on prednisone again and as @Shea said, that med makes me a bit loopy.  The first time I was on it several years ago, I would cry  at the drop of a hat.  Maybe it was partly the worry of the new asthma diagnosis back then, but pred still puts me on edge.  The high doses made it difficult to sleep and the longer term low dose makes me feel staved all the time!    I felt like my mind never slowed down even when I thought I was sleeping.  Now I also warn people if I am going to be on it. 

  • K8sMom2002

    Oh, yes, this is an AWESOME strategy, warning folks about the dreaded pred! 

    But like you, I've seen folks adjust and not have so many mood swings, etc. And for my DD, she's one of the few that doesn't seem to be phased very much. Oh, to be like that!

  • Megan Roberts

    Hey @Shel glad to hear folks are chiming in with words of support! Hope the pred provides some relief until you can get in to the specialist.  In case no one chimed in about the asthma-related fatigue, yes, that's totally a thing.  Your body needs oxygen and when it gets less because of an asthma attack or flare, it can be exhausting for days afterwards.  

    There's a lot more information available by free download in , an AAFA publication.  

    Let us know how that pred goes…

  • LK

    @Megan Roberts I had been wondering about being so tired for days after a flare.  Knowing it is asthma-related fatigue and normal (as normal as any of us are!   makes it easier to deal with. 

  • Shel

    I agree with @LK…knowing that fatigue is part of asthma makes things a bit easier to deal with.  Some days would be so frustrating because I was so tired and had no idea what was wrong…now I know it's all part of asthma!!!  Thanks!

     

  • LK

    My apologies for a typo in my above comment:

    '@Megan Roberts I had been wondering about being so tired for days after a flare.  Knowing it is asthma-related fatigue and normal (as normal as any of us are!   makes it easier to deal with. '

    I didn't intend to put in the winking face! I typed a right parenthesis and it turned into that gremlin!  I did not see the Edit option under Take Action on my post so wanted to clarify my comment.  

  • Megan Roberts

    Several family members (and me) have all had the same experience… getting fatigued and feeling worried because we didn't understand why it was happening.  Once the asthma diagnosis came into play it was actually a big relief to just know what was causing it.  

    Also.. LOL about the parenthesis inadvertently turned to a winky face. My screen is so small I have to enlarge it to even see what those faces are doing! I've done worse…

  • K8sMom2002

    I think that is what is so great about this community … it really connects the dots and lets us know we aren't alone.

    And if you want a list to lots of the keyboard shortcuts to the emoticons, I've put a list here …

  • Pljohns

    I still struggle to remember that fatigue is a big part of asthma.  it didn't dawn on me until today-after 4 days of struggling and being absolutely exhausted and now after 3 days of nebs around the clock and FINALLY feeling better-yep-no wonder I was so tired.

  • Jen

    @Shel Has the prednisone been helping?  Have you had the specialist appointment yet?

  • Shel

    Thanks for checking in on me!!

     

    I’m  done with the prednisone and I did see a dr at the lung center a couple days ago. He gave me a presc for a nose spray, GERD medicine, an allergy pill and a steroid inhaler. I didn’t get the inhaler yet due to some preauth insurance thing. It all seemed sort of rehearsed …like he as reading from a book which made me feel like he wasn’t really listened …but… I’m not coughing as much since I started the other meds tho except when I go out in the cold. I live in north western PA and it’s been cold the last couple days…winter is here!!!!  The dr also scheduled an X-ray of my esophagus. I didn’t realize all of that was connected to asthma!! Guess he knows what he’s doing! 

  • LK

    Hi @Shel,

    I am also on a med for GERD and allergy pills.  Some of my coughing especially when lying down was from GERD.  Being on these meds has really helped in that regard.  I will admit I had my doubts about that coughing being caused by GERD.  I was put on the GERD a few years before I knew I had asthma.  

    My Dr also had me have an endoscopy to see how my GERD was affecting my esophagus.  Thankfully, there hasn't been any damage.

    I agree some times doctors seem to respond by rote but up to a point they seem to know what's going on with us, at least my doctors have so far!  If there gets to be a time when I don't think any of them are treating my symptoms and just throwing meds at me, figuratively of course, I plan on discussing it with them and/or changing doctors.

    Hope you keep improving!

  • Melissa G

    Hi Shel! How have you been doing? Were you able to get the inhaler script filled? Have you had any problems this summer with all these weather changes we have been having?

  • Linsley Fernandes da Silva
    Shel posted:

    Thanks for the reply!!  The Ventolin does help..until my last visit to urgent care I wan really conservative with it, now I use it several times a day!

     

    Shelly

    Hi, Shelly, probably you have to use your puffs more. Talk about it with your doctor.

    Good look and bye

    from Linsley Silva

  • K8sMom2002

    Welcome, Linsley! It's always great advice to talk to your doc about your medications … thanks!

  • Linsley Fernandes da Silva
    K8sMom2002 posted:

    Oh, hugs, Shel … you've had a lot to handle since May. 

    Yes, asthma can be like that … urgent care will do in a pinch, but asthma is best managed by a doctor who knows you and knows asthma: a board certified allergist, a pulmonologist, or a really on-top-of-it primary care physician who really knows her asthma.

    For right now, is the medication helping? If it's not, or if you're still in the "red zone" even after taking your meds, call your doctor or go to the ER or call an ambulance. Asthma can get seriously ugly seriously fast.

    A couple of resources that have helped me and hopefully will help you, too:

    •  - part of a new series of short videos that will help you learn more about asthma.
    • The – this was a life saver for me because I could get with my doctor and figure out exactly what I was supposed to do when.

    You are NOT alone. We've been there and we're here for you! 

    Hi, Cyntia, I downloaded the Asthma Action Plan, thanks for the tip.

    bye

    Linsley Silva

  • K8sMom2002

    Great! It's been super helpful to me — not just a way to discuss my asthma with my doc ("Okay, doc, if THIS happens, then what do I do?"), but it's also a good way for me to know what to do in the heat of the moment.

  • Linsley Fernandes da Silva
    K8sMom2002 posted:

    Great! It's been super helpful to me — not just a way to discuss my asthma with my doc ("Okay, doc, if THIS happens, then what do I do?"), but it's also a good way for me to know what to do in the heat of the moment.

    Linsley Fernandes da Silva posted:
    Shel posted:

    Thanks for the reply!!  The Ventolin does help..until my last visit to urgent care I wan really conservative with it, now I use it several times a day!

     

    Shelly

    Hi, Shelly, probably you have to use your puffs more. Talk about it with your doctor.

    Good look and bye

    from Linsley Silva

    You are wellcome Selly,  I will pray for you get bether quikly.