Hello all, sorry to come to this forum immediately in need, but I feel frustrated and alone. I’m a mom of 3 and have had a lifetime of seasonal allergies + indoor allergies (my scratch test was very positive, weeds, trees, dust) and asthma that in the past had been relatively mild (flared up with exercise, colds). Recently however, the asthma has taken on a life of its own. I wake up several times per week at night struggling to breathe, and at times use my rescue inhaler daily. I’ve been sick for the last 3 months with recurrent colds, been on 2 bursts of prednisone and got out of the hospital 1 week ago for an asthma/bronchitis flare. Currently I’m slowly tapering off prednisone, and finally breathing easier on a combination of twice daily budesonide nebs, levalbuterol and ipratropium.
What shocks and saddens me is how poor asthma care can be, even in 2019. I had an allergist and pulmonologist that I loved before I moved. However, here my primary care doctor never asks about my peak flows, rescue albuterol use or nighttime awakenings. All he does is listen to my lungs and if he doesn’t hear a wheeze, says everything must be ok. The same thing happened in the ED on the night I was admitted. I told them I couldn’t breathe and never have been much of a wheezer. The ED doctors told me but your o2 sat looks ok (90%) and your lungs sound ok, though diminished. My heart rate was in the 140s and my blood pressure in the 160s. They tried to explain away the vital sign changes on my steroids and nebulizers, even though I told them I have never been like this before on prednisone and nebulizers. I was too short of breath to lay down. Thankfully the admitting doctor recognized what was going on and got things under control with methylprednisolone, high dose inhaled steroids and aggressive q4h nebulizer treatments. The silver lining is I now have referrals to establish with allergy (ask about immunotherapy?) and pulmonology. It just pains me and frustrates me to fight to be believed when I can’t breathe and show people my peak flows are 60% of normal, and am simply told but your lungs sound ok. Is it really that rare to use peak expiratory flows to guide therapy? I thought asthma action plans with guideline directed step up and down management recommendations were the cornerstone of managing moderate to severe asthma.
Thanks for listening! I am excited to have found this community.