Keep Walking - by Michref
My medication routine changed this last clinic visit and I’ve been reporting on my findings on Facebook. With the foster care home study being our top priority to report on the blog, this has slipped by for almost two weeks, but it has to be shared. Oh, update on the home study: the health inspector is expected today, tomorrow, or Monday to test our water temps, refrigeration temps, and some other random health-related things about our home. Then we will be fast-tracked to licensing!
Due to some changes we made, I haven’t felt this good since high school. Did you catch that? My tenure at high school ended the last millennium: 1997. Back when I was running track, playing competitive golf and lugging my bag around 9-18 holes 5 to 6 times per week, and playing flag football with guys twice my size.
Changes like this need to be discussed, and you deserve to know what works for me so you can ask your doctors.
My routine first:
- Albuterol in my Trio
- Pulmozyme in my Trio
- PARI HyperSal 7% in my Trio with my “dirty head“
- 30-minute inCourage Vest
- Colistin or vancomycin (switching months) into sinuses with PARI Sinus (not SinusStar)
- Colistin in my Trio with my “dirty head” * every month
- Cayston in my Altera
- * Spiriva using the HandiHaler
- * 10-minute, 1/2 mile walk with a 100′ run (building up the running) 7 days per week
- Advair Diskus 500/50 after the walk
- repeat at night minus the walk
That’s everything. It takes me about 2 hours from start to finish. I put an asterisk before the changes from the last many months. I have some hard evidence that this is working, but not a PFT yet. I’m sorely tempted to drive downtown to get a PFT after my morning routine, but I’ll wait for clinic, and so will you.
My walk is pretty easy to fit into my day. I actually look forward to it now. I’ve got my Nike + chip in my shoe and I start the app to track every day and either put on a Dave Ramsey Show podcast or listen to a business audiobook. This week, I started walking too fast for Beautiful’s shorter legs – she said she’d have to run to keep up, but didn’t want to hold me back.
My goal is to be under a 16-minute mile pace with combined walking and jogging and keep working my way down. I’m going to take it very slow to avoid discouragement from a sneaky episode of hemoptysis that would just scare me into sticking with walking. I’ve walked every day since the Monday after my Friday clinic (I accidentally deleted my 1-mile walk on Saturday!).
The number one difference is Spiriva. Without a doubt, it’s opened up my airways all day, every day. What was an 8-10 second maximum breath-hold, I tested myself earlier this week with a 35 second hold. I also got the peak-flow meter out that had Beautiful’s mark and my old mark still on it. I was a 300L/min before and I blew a 420L/min – almost a 50% increase! Yeah, I can’t wait for PFTs!
We made a video last week about doing Spiriva, but now I’m embarrassed by how short I could hold my breath, so I think I want to re-record it and show the difference. I may not get the video edited today to post tomorrow, but I will definitely post it next week.
That’s the update on my routine and the difference it’s made?
Have you tried Spiriva and had similar or different results? Have you started doing cardio this year? I’d love to hear your results.
I’ve been increasing my cardio this year, but have never been on anything like Spiriva. As you know, I’m starting Advair so hopefully that will help open me up. One thing I have started this year is yoga. I know it sounds silly, but I believe it has helped me tremendously. I cough like crazy from the deep breathing practice associated with yoga. Plus, I have ten times the energy as I had before the yoga. I’m so happy that Spiriva is helping you and that you are able to get some exercise in. This is fabulous news! What a wonder drug for you 🙂
It doesn’t sound silly to someone who’s tried yoga. 😉 I did it a few times at my desk job when they offered yoga for an hour every week for $2 to have the instructor come in. I liked it, but it was awkward to be doing stretches with co-workers that induced gas release. Ha! For now, I’m digging my walking and hope it continues to feel that way for a long, long time.
That’s awesome man!! Glad you’re finding something that works for you. Keep it up!
Still can’t believe you have to go thorough so much to foster/adopt yet nothing to get pregnant. Water and fridge temps?? I know that there are plenty of peeps bringing kids into this country without running water. Something is wrong here 🙂
Thanks – Sunday morning will be 14 straight days… woot!
I really struggled with the intrusion until we heard of some stories about foster kids going from the frying pan into the fire. It’s the bad people in the world who make the rest of us go through the wringer to ensure that we are truly a safe haven. I’ve got my heart where it needs to be now, but it wasn’t easy.
We’ll both be writing on Monday about the support group meeting last night – Lauren Dungy was our speaker and it was amazing.