When the tests are “normal”

[Kristy1985]

After a bad bought of bronchitis, I seem to have triggered me astjma (have been mostly symptom free, no maintenance meds needed). Its been frustrating to see pulmonologists who question where I even have asthma as my Pft tests are normal and peak flows are always above average (450-500).

They referred me to a cardiologist just to “check things out”. He doesn’t think anything is wrong. I had an ekg, all normal. And an echo on Friday. I’m waiting for those results and kind of freaking out now. Would they call me before my follow up appointment if it was abnormal? It’s 2 weeks from now. I have fallen down the Google hole and have convinced myself I could have pulmonary hypertension.

[d2read]

Hi, Kristy,I’m sure the doctor would call if they found something major. They always have in my experience. So deep breath. Also other things could be going on.

First, doctors have recently learned that 1. A lot of diagnoses of asthma were made because the physicians at the time didn’t know what else it could be; and 2. Asthma isn’t one disease/condition but a spectrum of them with sometimes very different triggers and symptoms, and at others different responses to medications.

To use myself as an example, I’ve had severe asthma pretty much since birth (1956), always with lots of wheezing. Eventually, starting about 2011, I started having strange bouts of something kinda like asthma, but no wheezing. Really bad peak flows (220-240), but less responsiveness to bronchodilators. And less responsiveness to prednisone (troubling since I also don’t respond to anything else). Then we discovered I have eosinophilic asthma and emphysema - caused by the special white blood cells.

Now, I’m not saying you have anything like eosinophilia (it’s pretty rare, and I have the rarest kind of all). But I know plenty of people (including a 76-yo friend) who have been disconcerted and a bit miffed about being told they no longer have asthma.

As far as I’m concerned - that sounds better than hearing I’d won the biggest lottery in the world tax-free. But. I’ll just be happy for my friend Jim, and maybe you.

Stay calm and carry on, as the Brits say. Sounds like you may be doing well. If there’s a problem to tackle, you’ll be able to tackle it with your team.

Hang in there — and let us know! Hope you DON’T have asthma anymore!! Debbie

[Kristy1985 in reply to d2read]

Thanks, Debbie! You’re right that asthma symptoms can vary and change throughout our lives. If it’s just asthma I can live and manage it. It’s frustrating however, to wait months for specialists (even my primary doctor seems to get booked for a week) to get minimal guidance. Best wishes in your own journey! -K

[d2read in reply to Kristy1985]

I do understand. My doctors are all at one of the largest university medical school's in the country, so I understand. One trick I've learned is to always be really nice to the doctors' nurses and appointments clerks -- the nurses can often get the doctor to call me early when otherwise a message might languish for days in a stack, or ask the doctor to work me in (or schedule me with an N-P for eval). And the appointments clerks -- we live and die by their whims, it seems

Hang in there. If you get too desperate, call the nurse and see if she can get the doc to call you back sooner.

[Kristy1985 in reply to d2read]

Thank you!