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Moderate persistent asthma, checking VCD, doctor not listening, GP to the rescue

Adult onset asthma. My asthma journey started in late June 2018, with a family road trip to Yellowstone from Oregon that included an urgent care trip the day before leaving (cough syrup with codeine- thank God), ER in Idaho first night(asthma attack- chest X-ray clear, breathing treatment, prednisone and inhalers started), phone call to GP next night in Montana (prednisone increased, added singulaire and fresh inhaler), 2 visits to urgent care in the park (breathing treatments, added Flovent and z pack), ER night we got home (same asthma flare, X-ray clear, breathing treatment, heart tests, blood tests, meds and home).

2 specialists later and I am with an asthma and allergy doctor, taking Breo Ellipta 200/25, xyzal 25, albuterol as needed. Allergic to mold, dust mites and ragweed. Seem sensitive to air quality and URIs. I am not presenting “normally”. My main symptoms are cough and shortness of breath. 

So two weeks ago I got an upper respiratory infection. I went to my asthma doctor, I felt horrible and couldn’t stop coughing and was SOB. She gave me oxygen and said this is your “vcd” cough. Told me to rest and prescribed Tessalon Perles. I haven’t even had the vcd assessment. I went home. Two days later coughing worse, SOB worse, still feel terrible. I called the after hours doctor and got my doctor. She said I told you this was your vcd cough, take the Tessalon Perles. I said it’s not helping, what about the asthma. She said I think it’s the vcd and you can always go to an ER. I hung up and cried. A nurse called me on Monday to set up a referral for the vcd assessment and asked if I had questions. I said yes, I’m still struggling, what about the asthma. She said oh the doctor told me it’s your vcd. I missed 3 days of work and went back sick and still struggling. 

I went to urgent care on Friday, they did an X-ray, clear. They diagnosed me with an acute asthma exacerbation and prescribed prednisone 5 day. The breathing started clearing up a few hours after my first dose and was hugely better the next day. The prednisone knocked it out. 

I have read that vcd does not respond to asthma meds. I felt so let down by my asthma doctor. I went to my GP today about a week later and he was great! He helped talk through everything with me, is sending the other doctor a note and wrote me a RX for prednisone to “keep in my purse” in case I need it in the future. 

What have others done when their asthma doctor won’t listen to you? Has anyone else had asthma that doesn’t act “normally”? Does anyone have asthma and vcd?

sorry this was so long, I’d appreciate any advice or input.

 

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  • Melissa G

    Oh Shadowcat I am so sorry! It is incredibly frustrating when dr's don't listen. When are you able to have the VCD eval? Could you get a second opinion on your asthma?

    When my youngest was about 5, she ended up in the ER a few times and they kept saying she had the croup. She had never had the croup before and I really felt like it was her asthma. By episode #3, I had had it and called our allergist. After an appt, Bekah's asthma was not being well managed and we changed her from Flovent to Advair. What a difference it has made. 

  • BrendatheMom

    I so understand. We've gone our whole lives with Drs not listening for my daughter. Prednisone or Celestone shot are the only things that seem to help at all…the docs wait too long to give it to her until it gets so bad she can't stop coughing at all. Tessalin pearls didn't help her, either.I'm sorry you are going through this.

  • Shadowcat04

    Well, actually I had a flu shot and a pneumonia vaccine yesterday and today I am having every side effect possible. I had a fever of 101.5 at last Check, my arm (where the shots were) is very sore and hot, I have had very bad muscle pain and chills. I assume that this is all from the shots. The fever seems pretty high- especially since I’m usually a 97.5 gal. I feel terrible. 

  • Kathy P

    Yikes that sounds really miserable! Have vyiu checked in with the doc about the side effects? Particularly the fever. 

  • Shadowcat04

    No, not sure when or if I should check in on symptoms/ side effects. The high, for me, fever is doing me in, especially. Haven’t eaten much because I have no appetite, but I am drinking. 

  • Kathy P

    I'd probably check in with the on call doc since it's more than just the fever itself. 

  • Melissa G

    I second Kathy, I would check in with your doctor. There are a lot of bugs going around too….

    I hope you are feeling better today! 

  • Shadowcat04

    Thank you for the ideas. I called an advice nurse and told her my symptoms- still fever over 101, very painful arm, hurts to move arm, off and on chills and all over body aches. The nurse was nice. She said it still sounds like a reaction to the pneumonia vaccine, and this kind of reaction usually lasts 1-2 days. So, if it isn’t better tomorrow (or if it worsens before that) I should be seen. 

    I arranged for a sub at school tomorrow, but I’m really hoping I feel better. I just saw my GP on Friday, I hate going back so soon and being all sick. Also, my DH leaves for a trip in the morning so I am a single parent most of the week. Yuck.

     

  • Shadowcat04

    Thank you. I hope it’s better tomorrow, too. If not, I’ll be going into the doctor. Now a cough as started, of course. 

  • LK

    Oh, Shadowcat!    I would definitely be concerned with so many symptoms!  How are you this morning?  I hope you are going to see your doctor if you are not a lot better.  Glad you got a sub for today.  Please let us know how you are doing!  

  • K8sMom2002

    Shadowcat, so frustrated for you! Not just the asthma flare and the issue with your doc, but the reaction to the pneumonia shot, too! 

    I'm hoping that VCD evaluation will offer some clues as to how much it is or isn't contributing. 

    Have you had a good track record otherwise with this asthma doc? Does she seem to hear you about other things? What's the reason you chose her to begin with?

    Big hugs … and sending good healing, easy-breathing your way!

  • Kathy P

    I hope you are feeling better! Being sick with your DH traveling is not fun! BTDT many times. 

  • Brenda Silvia-Torma
    BrendatheMom posted:

    I so understand. We've gone our whole lives with Drs not listening for my daughter. Prednisone or Celestone shot are the only things that seem to help at all…the docs wait too long to give it to her until it gets so bad she can't stop coughing at all. Tessalin pearls didn't help her, either.I'm sorry you are going through this.

    Hi BrendatheMom, welcome to the AAFA forums!   I'm so glad you found us! How is your daughter doing with her asthma now?  

    Brenda

  • BrendatheMom

    Today she is still out of school. Some improvement! Still intermittent cough. Pressure in ears and pain in head when coughing. She's just wiped out exhausted, and I think its from the last week's abuse on her body being wracked with that darned cough. She's recovering slowly. Thank you for checking. Idk how she's supposed to go up and down the stairs in high school tomorrow. Still praying. Thank you all.

  • Brenda Silvia-Torma

    Does the school have an elevator that she can use? If it's for staff only (or people who otherwise are unable to climb stairs), perhaps the school can allow her to use it during times when she's experiencing this cough?

    Hoping she's feeling better soon!!

  • Melissa G

    Oh my Brendathemom! Is she taking medications for allergy/sinus issues? I agree with Brenda…I would inquire about her using the elevator at school. 

    Thinking of you Shadowcat! 

  • Shadowcat04

    My fever seems to have finally broken. My arm is still hurting and I can’t move it normally. There’s a little red area, rash on the injection arm. It isn’t too big, but I don’t know what else it could be from. And, now, of course, my asthma cough is back. I was coughing so hard after showering that I almost threw up. Cool air, sitting down and albuterol helped. I need a break. 

  • Brenda Silvia-Torma
    Shadowcat–Oh no!  I'm glad your fever broke but that is so frustrating about your asthma cough and your painful arm. Since your arm is still hurting, will you go back to the doctor since the nurse said that if it's not better to schedule an appointment?
    The FDA has a way for consumers to report a . Have you thought about reporting it since it significantly impacted you the past few days?
    Brenda 
    Shadowcat04 posted:

    Thank you for the ideas. I called an advice nurse and told her my symptoms- still fever over 101, very painful arm, hurts to move arm, off and on chills and all over body aches. The nurse was nice. She said it still sounds like a reaction to the pneumonia vaccine, and this kind of reaction usually lasts 1-2 days. So, if it isn’t better tomorrow (or if it worsens before that) I should be seen. 

  • Melissa G

    Oh my…could you have cellulitis from the vaccine? My niece got cellulitis when she was little after getting shots, it was awful. Could you call your dr and get an appt to be seen?