In Which I Request a Beating with Nebulizer Tubing

I'm trying to be organized because I have a lot of questions and a lot of things to cover with the pulmonologist when I see her. I don't want to be a time suck and I'm hoping by honing what I want to go over, I will avoid that. Plus, the toddler is coming with which always amps up the chaos level. If worst comes to worst, I can give her the list while I toddler wrangle (hopefully she won't scream the entire time--crossing fingers).

I'm bringing chocolate in the hopes that will soften the blow of having to put up with me and the toddler.

Here's my list.

1.Refills of all meds; symbicort, pulmicort, singulair, prednisone, rescue inhaler. 90 day supply to conform to insurance requirements.

Should we move to a higher dose of Symbicort for a while given that I’m still symptomatic? I think I'm on the lowest dose, right? In the same vein, I think the Singulair needs to go back to being a daily med for the time being.

I probably need a new nebulizer too since mine is old and louder than a NASA rocket at liftoff—it ‘walks’ around the room when I use it.

2.Build a better nebulizer treatment. Adding Atrovent or Pulmicort? What is the maximum dose of Albuterol I can use at once?

A better home nebulizer regimen is the one change we can make that I think has a good shot at keeping me out of the ER in the future. The abluterol alone was not strong enough this time. I would get maybe 30 minutes of low grade relief and then I could feel the inflammation building up in my lungs again. I literally could feel my airways swelling shut again.

This bug was like a nuclear bomb had detonated in my lungs. They were just raging out of control no matter what I did.

3.Deal with the mental whiplash. What the hell happened to me? Why were my lungs creaking? Should I have been in the hospital?

4.What do we do about the growth on the lung? Do pulmonologists handle it? Who do I need to see? What do I need to do? I am not comfortable with waiting a year for another CT scan. I would like to be more proactive than that.

Note: I did feel this episode a lot more in my right lung, assuming that it is truly possible to differentiate those sensations. The right side stayed 'gunky' for a long time and I felt like I could not clear it. I felt 'stuck' down at the bottom of the right side--even before I knew about the growth. Now when I wheeze, it seems to hit the right side really hard.

5.Peak flow still lower than normal. I can't get my peak flow back up to 600 reliably. I've given up on 650 which used to be easy. I doubt I’ll ever see 700 or 800 again as that has been getting harder and harder to hit even before this last episode.

6. Risk of Cushings? Could we test to ensure the adrenals are okay? The prescribed taper felt really abrupt. I would have preferred a slower alternate day taper with incremental doses of 10mg working down to 5mg. I don't know if that's a medically valid request/observation, but I want to be cautious—Cushings again would be a nightmare.

7.Do I have asthma for real? (Yes, this again.) Because this one doc thinks it's vocal cord dysfunction and I promised him I would ask you.

I notice that my normal pulmonary function tests have been used twice now to justify going down the rabbit hole of 'you don't have asthma'. What is up with that? How can I nip that in the bud in the future?

8.When does my immune system 'recover' from the prednisone? I've been keeping myself quarantined for fear of catching another bug.

9. Rescue meds review. I need a review of how often I can use the rescue inhaler and nebulizer. My acute asthma skills are beyond rusty.

10. Handling my impaired judgment when sick & updating the asthma action plan. I.e. In the future, feel free to beat me with nebulizer tubing until I come to my senses.

12. Explain how the low blood pressure complicated the whole situation.

13. How will I know if I'm ready to exercise?

14.Is this episode indicative at all of future episodes? Getting better has been like watching paint dry...in the rain. Very slow and incremental. Correcting the low blood pressure was a huge improvement, being in the hospital helped, but I have been surprised at how long I relied on the nebulizer/needed the nebulizer. I usually bounce back much faster.

15. Advice on what to do about the toddler's wheezing.

16.Get copy of Cushing's blood work from the last time for the endocrinologist.