This is the question my loving wife has been asking me about 1-4 times per day for the past….3 months or so. I was telling a friend just the other day I’ll know this summer of asthma hell will be over when I haven’t heard “the question” for a few days.
This summer all started back in May when I had what I’d call a “flare up.” One thing led to another, I caught a few bugs, overdid it way too many times, encountered drywall dust from construction in my workplace and I keep hearing this is the worst allergy season ever. Just this past week I was starting to get better and then took a turn for the worse with a fever. The doctors thought I might have pneumonia, which scares the crap out of me, but fortunately the chest x-rays came back clear. That probably sounds like great news, which it is, but I’m still on Levaquin, more prednisone, doing 7-9 nebulizer treatments a day and generally feeling like crap on top of my 13 other maintenance and emergency medications and treatments.
Today marks day 62 of prednisone this summer and went something like this…
- I actually felt tired around 3am and got about 5hours of sleep – first time I’ve slept in about three days.
- Upon waking up and feeling proud that I’m no longer a zombie, I immediately realize I haven’t had a neb treatment in 5 hours and feel like I’m chasing symptoms all morning.
- By around 2pm things start evening out and I’m actually able to walk around the house without feeling like I’m going to fall over and try to entertain my daughter to give my wife a break.
- Dinner time rolls around and some family stopped by to eat with us. I was starting to feel a little lousy but wanted to make the effort to sit at the table for a meal ( you know, just like in the Spiriva commercials!).
- After dinner I started to help clean up, take care of dishes, etc when I started to feel bad. My wife told me if I needed to take a break to do so. I lounged on the couch and tried to chill. This is when I realized my pulse was around 105 and my O2 sat was at 93% so I did another neb.
- Fast forward about 45 minutes and for apparently no reason I’m at 88-89%, PF is at 320 and my pulse is a solid 115 all while I’m about as chill as a Buddha statue.
Now here is one of those several times where I was asked, “Do you need to go to the hospital?” The normal answer would be, “yes please,” but I’m not normal. For some reason I have to live on the edge…that and I don’t always make good decisions when I can’t breathe. In the back of my mind I had a feeling this wouldn’t last too long, and thankfully it didn’t. I also just hate going to the ER cause it’s never fun and it’s like I’m admitting defeat. After about 90min I was able to stabilize myself into the 93% range and my PF was up in the 400s – not great but also not in the need to go to the ER realm.
So tonight I’m once again out on the couch watching movies (Alien anthology tonight) as I continue monitoring my numbers and promising to wake up Liz if things get bad. I did happen to come across a cool blog with lots of great stories which is giving me something to do. I’m not nearly as bad as Stephen, but I can definitely relate. It’s not often I come across people on the internet writing candidly about severe asthma and always appreciate it when others are wiling to share their stories.
Back in May I wrote about being on day 29 of an asthma flare-up. I’m now 1/3 of the way through July and today marks day 68. June was definitely the worst of it with two hospital visits, and by this Thursday I will have been on prednisone for 49 days, which I’m pretty sure is the longest stretch I’ve ever done. I’m not completely confident I’ll be ok once I’m off of it, but we’ll see. I’m still doing 3-4 nebuilzer treatments every day and having to take it easy. Just walking outside from a building to a parking lot in 85 degrees with humidity still wears me out quickly. The hardest part is still just pacing myself.
Friday I was able to attend the wedding of some friends. They kept things simple and low key, which is different from many weddings I’ve attended. People seemed less stressed. There were a lot of Doctor Who references, some Game of Thrones references and a homemade crossword puzzle that our table knocked out in record time. I wasn’t feeling too great afterward and spent the weekend taking it easy, but I was glad to get out and do something social. I think the best part of the night was when I noticed a spider on my friend’s suit, which I promptly flicked-off. The thing flew across to the other table and landed on/near a woman who seconds later was looking around wondering where that spider came from.
One thing I have been persistent on is riding my bike whenever possible. Exercise is an important part of respiratory health and keeping the lungs in good working order. Even if I’ve been lying around all day, 20-40min on my bike can make a huge difference. Back in the day I used to go running all the time, I’m in no condition to actually do that right now but maybe I’ll work my way back to it.
After my 3rd PCP visit and kenalog shot, I got a call in to my pulmonologist’s office about an acute visit. Unfortunately my rock-star lung doc is on some much needed vacation and fortunately I was able to see one of the NPs this morning. They aren’t sure exactly what’s going on, but I’m at least being taken seriously. After I finish the ER Z-pack, I’m starting 10 days of Levaquin, and my prednisone taper is being extended and lowered by smaller increments. Next week they’re going to monitor my oxygen saturation at night to make sure the CPAP is working properly. I think I have enough prednisone now to start my own pharmacy. I’m just hoping I can continue to get at least a tiny amount of sleep.
On my outing today:
- Had to stand in line for check-in at lung doc while the receptionist gossiped on the phone and kept another old woman with oxygen tank waiting
- Another old woman, with oxygen tank, cut in line while I was waiting to check in
- Some maniac in a Cadillac slammed into a Suburban while crossing 2 lanes coming within feet of my car and hitting another car in the hospital parking lot
- I got lots of stares at Taco Bell while getting some tacos for lunch
- I had to stand in line at CVS for about 20 min
- A woman cut in front of me to buy M&Ms cause they’re more important than my prednisone
- Some other dude tried to cut in front of me just because
- I thought I wasn’t going to be able to walk out of CVS without sitting down for five minutes
I’ve had a rough morning and I still hate The Eagles. Four puffs of maxair, a double abuterol nebulizer and an hour of sitting have helped a lot. I think it’s time to start a movie.
My efforts to post daily have been thwarted by another asthma flare up. Fortunately I’ve stayed out of the hospital so far this calendar year, but there were a couple times in the past weeks that I should have visited the ER. I’m currently on my second round of prednisone and feel like I’m riding the Crazy Train. The good news is I’m actually starting to feel better and I’m lucky enough to have a job that allows me to do work from home. If you’re also suffering from asthma right now, here are some tips to get better more quickly.
- Rest – it can be hard to just do nothing, but sometimes that’s what you need to do. It’s not always possible to stay home from work or have someone else take care of things, but try to at least slow down.
- Lots of fluids – water is important by itself, but can really help make a difference for asthmatics.
- Avoid irritants and allergens – try staying in doors and limit outdoor activities.
- Seek medical attention if necessary – when my oxygen saturation gets low, I acquire something called “asthma brain.” I can’t seem to think clearly and make poor decisions. Make sure there’s someone around to check up on you and don’t be a hero. See the doctor if necessary.
I’m hoping to make a full recovery soon because I have a film festival to attend in July. The Dude abides.