I have what is diagnosed as cough variant asthma, with perhaps some hypersensitivity to Aspergillus flavus
. I do not have wheezing, just a very severe, frequent, disabling cough.
Summer of 2012, I developed a cough. I thought it was a cold, and thought nothing of it, though it was sudden and bad. However, it didn't go away, and after a trip to Seattle (I am from Portland, OR), I ended up in the ER because of how bad it was, unable to catch my breath from coughing and wretching. After listening to my lungs and a quick assessment it was called "bronchitis", and I was giving antibiotics and an inhaler.
However, symptoms hadn't improved after the full course. After multiple doctor appointments later, I was told it was "post nasal drip" (I do not have a runny nose) or "allergies" or numerous other things. I told a substitute doctor, "This is really bad, I can't even walk up stairs anymore," and he said, "What do you want me to do about
Finally however, my regular doctor started taking it seriously, and a year later, I was given a diagnosis of asthma.
My new doctor gave me a referral to a pulmonologist. He told me it is cough variant asthma. My lung function tests (spirometry) were "normal". My diagnosis of cough variant asthma came after this test. I looked it up online and apparently you can have a normal spirometry test and still have CVA? Is this true? I have not had a methacholine challenge. I have had a chest x-ray. There is no scarring.
The pulmonologist did a blood test for all allergies but not a scratch test. He also did a hypersensitivity pneumonitis panel for birds and farmer's lung (my mom, who has since passed, had HP -- bird fancier's lung). According to the blood test I have ABSOLUTELY ZERO allergies. I showed up as sensitive to Aspergillus flavus
on the Farmer's Lung hypersensitivity pneumonitis panel. He did not seem worried about
this and said it was not "dangerous" for me to go to the barn or be around the hay that this mold grows on, just uncomfortable. I don't know how accurate the blood test is. All my life I've been told this or that is the result of allergies when I went to the doctor, and now I'm being told I'm not allergic to anything.
I am on:
- Qvar (beclomethasone dipropionate) inhaler twice a day
- Singulair (montelukast) once a day
- Claritin (loratadine) once a day
- Proair (albuterol sulfate) as needed
I was on Advair instead of Qvar for a while but I couldn't stand the "texture" and it made me gag, and it didn't seem to be making a difference, so the doctor switched me back to Qvar.
The pulmonologist prescribed these meds, had a one month follow up after, and then said, "See you in one year."
I have Medicaid/Medicare.
However, despite these medications, I still have terribly disabling symptoms. My life has all but stopped. I know there are athletes with asthma. I can hardly even cook my own dinner anymore. It took me two days to put away my clean laundry. If I walk outside and it's cold, I immediately have an attack. I use a scarf over my face (and my sister is even making me special ones with elastic to hold them on) but it only helps a little. Even when it's warm, I can only exert myself a little before I'm coughing.
On Saturday night, my partner's mother had a stroke. We parked in the parking garage at the hospital, and made our way down to the door -- and found that entrance to the hospital was closed. Walking to the other door to the hospital, I was coughing so hard, I threw up in the grass twice, and had to stop and rest several times. My family had to wait for me to stagger after them, coughing and catching my breath. When I finally got in, security was suspicious that I was sick with something like the flu (which I totally understand!) and was hesitant to give me a visitor's pass into the hospital until my partner assured them it was just the cold air setting off my asthma!
I cry when I get some place and they have stairs, and no elevators.
My partner's family gave us a bunch of money to completely remodel the house for asthma. We ripped up all the carpets, and got rid of all the soft furniture and blinds. We put down vinyl flooring. This has made a huge difference with me being able to at least live in the house, wow. But I am still WORTHLESS, I can hardly do chores anymore. I feel horrible. Things that used to be my job (laundry, cat boxes) are too dusty for me now. The littlest amount of dust sets me off. I worry everyone's going to get so tired of me.
I can't keep up with anyone -- I slow them down; I can't go out, sometimes I just don't feel up to the battle; my body hurts all over from coughing all the time; I feel gross and embarrassed from coughing and throwing up in public and having petechiae around my eyes, people treat me like I have the plague; I'm tired and worn out, physically from the coughing.
I just want to know, is it possible that my doctors are overlooking something? Could this be something else? Or is there a treatment option we're not looking at? Or are there any tips or tricks or quality of life advice you can give me to make my day to day life better?