Navigation

Asthma doctor wrong it wasn’t VCD, still have symptoms

Well, I am going to be looking for a new asthma doctor, again. I really, really didn’t want to switch again- but now 4 people have told me I should, including my PCP and the VCD doctor (ENT). 

I’m 47 and started an asthma flare in mid-June that lasted through mid-July. After many meds tried and a pulmonologist and an asthma doctor, we got it kinda controlled- but still needing my inhaler almost daily. I have had 3 exacerbations since July that were treated with prednisone- that worked. I had one situation where I was dancing for about twenty minutes and then started having an asthma attack, thankfully relieved by albuterol. 

3 weeks ago I got a virus, which started the asthma coughing back up. I went to the asthma doctor. She gave me Tessalon Perles and told me it was my “VCD cough” (that I wasn’t even diagnosed for). I got worse and tried calling for help with breathing. She would not help, told me to go to the ENT. I ended up in Urgent Care, got prednisone which worked. 

Soooo, went to the VCD assessment and I do NOT have VCD. That asthma doctor wouldn’t even talk to me and help me when I needed it because she was so sure I had VCD. 

I think We haven’t found the right help for my asthma yet and maybe not all the reasons. 

 

5
122

Comments 5

  • Brenda Silvia-Torma

    @Shadowcat04, I'm so glad you followed your instincts! Can your PCP and/or ENT recommend a new allergist?

    I've had doctors who brushed me off because I questioned their conclusions. So, I searched for other docs to join my team who would listen to me and respect my expertise about "me". 

    You are the expert on you!! You are the captain of your medical team and deserve to be heard and treated with compassion. 

    Brenda

  • K8sMom2002

    Oh, hugs! So very frustrating, but you're right to search out an asthma specialist who won't have pre-conceived notions.

    I am curious what that doctor would say now that an ENT has ruled out VCD.

    Love, love, love Brenda's idea about talking with the ENT or your primary care doc about another referral. Doctors tend to refer to doctors they work well with and who are like them … so if you really like the ENT, you've got good odds for getting a similar doctor if the ENT refers you to an allergist or pulmo.

    So glad you got at least one piece of the puzzle figured out! You've looked under a rock, and there wasn't anything VCD there … that's good. But I know it's still frustrating to need to figure out what IS going on. 

  • Shadowcat04

    Thank you, Brenda. This has been so hard for me and a huge learning experience. Asthma is not as easy to identify and treat as I had thought it was before it came my way this June. I had had other episodes, starting back 12 years ago- almost always starting from a virus, but this is all so new. I still feel like they are missing something. Clearly the medications can clear it up when it is acute. I am definitely affected by air quality. We are getting the bad smoky weather up in Oregon from the Cali fires. It seems like I need more tests or more meds or solutions to try. I’ve read on here enough to know that there are so many other things to explore. 

    My PCP said he’d help me find someone and  the ENT had two names for me. I’m waiting to hear back from my PCP- I’m also currently fighting a flare from the latest bad AQI from the fires and a message back from my PCP. 

    Any advice for next steps in self advocacy?

  • Brenda Silvia-Torma

    Hi Shadowcat04, You're most welcome!! It's been a huge learning experience for me too…I never knew how much I took breathing for granted until this past June, when I started having a lot of trouble. It sounds like you trust your PCP, so that is awesome!! Like Cynthia said, those referrals will be like-minded. 

    When I needed to have thyroid surgery, I asked my endocrinologist, "Who would you  see if you had to have surgery?" Turns out, he had to have surgery years before and gave me the name of his surgeon. And, that surgeon was wonderful!  

    IMHO, the best way to advocate for yourself is to continue to speak up and ask questions. Yes, you are "new" to this chronic condition. Yes, the doctor has years of experience managing patients with this condition. But, he or she is new to treating YOU. People are not carbon copies; what works for one person doesn't work for another. 

    You are doing a great job!! I'm proud of you b/c it is not easy to speak up when you're not feeling well.

    Does anyone else have any suggestions or recommendations?  

    Thanks!

    Brenda

  • Melissa G

    Oh Shadowcat I am so very sorry! It is definitely not easy switching doctors until you find the right fit for you…can you PCP recommend a specialist to you?