My New Treatment: O to the 2

I recently started a new treatment that was probably long overdue and needed for quite some time. At the request of our brand new adult CF doctor, I did a 6 minute walk test before I was discharged from my last hospital stay (May). She wanted to rule out anything funky as to why I wasn't recovering quite as quickly as I did before, and the 6 minute walk test was one of the tests she ordered to get more information on my health status. It was a good thing she did.

Leading into the test, I informed them that I would really push it because that's exactly what I do in the gym. I didn't just want to casually walk to see how my body would respond. I wanted to really put my body under some stress to see how it would respond. I walked pretty much as fast as my short little legs would take me. In 6 minutes, I walked .4169 miles, but by oxygen saturation went from a baseline of 93% (which was actually a little lower than normal) to 82% about 3 minutes into the walk. I required 4 liters of oxygen to keep my o2 saturation above the "acceptable" number of 88%. In short, I failed the test.

I was far from disappointed. In 2009, I did an overnight sleep study that showed my oxygen saturation dipping to the lower 80's when I slept. With that info, I was prescribed an oxygen concentrator to use at night with 2 liters of oxygen flowing into me as I slept. 2009 was probably the first year in over a decade that I didn't wake up with a headache and actually felt rested in the morning. Why did I put up with sluggish mornings and headaches for a decade? Only thing I can think of is ignorance. At the time, I don't know that I even recognized oxygen as a treatment option while I slept. Starting oxygen overnight was an absolute life changer for me.

So, with that in mind, I had high hopes for oxygen supplementation during my workouts. I certainly was looking forward to (hoping for?) getting an extra boost during my workouts and not experiencing fatigue so quickly.

After setting up everything with home health, I received 6 mini oxygen tanks and a shoulder bag to carry the bottle around. I am supposed to use 2 to 4 liters depending on the vigorousness of the exercise. Based on my needs and consumption, I am allowed up to 22 bottles a month. (So far, that's been plenty). The first change I made was exchanging the shoulder bag for a backpack. Walking around the gym with a shoulder bag was pretty inconvenient and the backpack has proven to be a valuable upgrade.

So, have I noticed any positive effects from the oxygen supplementation at the gym? Honestly, nothing stands out, but it is noticeable. I'd say the most obvious impact is recovery time. I am certainly able to "catch my breath" faster and resume my work out. There may be a bit more muscle endurance (especially for big muscle groups like legs), but I'm not totally convinced of that. Even with the minimal noticeable effects, it's still be a great decision to start the oxygen supplementation at the gym. We of course all know about the stress that the body, especially the heart, goes through when it's deprived of oxygen, so there's no doubt that is something that I'd like to avoid.

There are potential negatives for some of you out there if you're deciding whether oxygen supplementation during exercise is right for you.

You have to keep up on your oxygen orders. This is just one more phone call to make and schedule to coordinate among the many we are already doing.

It's another potential insurance battle. I ended up having to do another 6 minute walk test that was documented in a different way (failed that one also) and my doctor had to write a special letter justifying it's need and make multiple phone calls before it would be paid for.

One more thing in your already full arms. I'm quite a sight walking into the gym. I usually have one (or two) kids in my arms, my water bottle, phone, headphones around my neck, and now oxygen backpack on. I completely realize that this is a first world problem ;)

You'll get strange looks. I'm convinced that most people at my gym believe that I'm doing some sort of altitude training. For those at the gym that have the courage to actually ask what's going on however, it's a great opportunity to introduce the world of CF to them.

Conclusion: None of the potential negatives above outweigh the potential positives for me when it comes to oxygen supplementation while exercising. I believe it's been a good decision for me and one I believe that all who see a drop in their oxygen saturation while exercising should at least consider.

**As a bonus, I don't get strange looks anymore when I cough. I mean, the guy on oxygen has to cough right? As I said above, I get strange looks, but they have more to do with a dude under 70 wearing oxygen. Double bonus - I don't think people look at me as the SARS guy or Captain Contagious like they use to when I cough my head off...although in a weird way, I kind of enjoyed that ;)

Thankful Thursday: Spontaneity & Oxygen

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for spontaneity. We decided on Thursday last week to go to Florida for the weekend to see my Grammy. So we bought out tickets and were off the next day. We aren't spontaneous like that very often, but I love when we are...especially with Mckenna. I'm hoping we can keep it up. I'm thankful that we're not totally boring...YET!

I'm thankful for family. We got to spend a lot of time with family over the weekend and it was AWESOME!! We all had so much and there's nothing better than fun time with family. We have the best family!

I'm thankful for carpet. My grammy's house has a lot more carpet than ours does, and it sure is nice not having Mckenna crack her on tile...all day long! I think Mckenna is probably thankful for carpet too. Mckenna is pulling up on everything these days, even things that aren't very sturdy, which leads to lots of falls. Plus, she's getting really brave and letting go of things to just stand on her own or to dive for other things. All of it means she's taking lots of falls. 

Ronnie's List:

I'm thankful for an easy going baby. Mckenna seems to just go with the flow despite what situation we put her in. She's certainly not a bump on the log, but she also seems to be pretty happy no matter what. I love that we can get her to smile at the drop of a dime...or anything that makes noise really :)


I'm thankful for the decision to sleep with oxygen. It's been quite awhile that I've been sleeping with the stuff, but there still are times that I can't sleep with it. On short trips, I never bring the oxygen concentrator with me, but on long ones we'll rent a unit. It's during those short trips that I appreciate coming home to the oxygen even more...it's amazing how much better I sleep!

I'm thankful for breaded shrimp. I don't eat anything breaded that often, but when I do, it's always good, especially shrimp. There are times I wish that we lived closer to an ocean so I could enjoy the fresh stuff, but then again, if we lived near an ocean, we could only afford to eat Ramen.  

So, what are you thankful for today?

Nighttime Waking

You may think this is a blog about Mckenna and her nighttime sleep habits. However, this blog has nothing to do with Mckenna, and everything to do with my hubby.

As some of you may have read in the past, Ronnie sleeps with oxygen at night. A few years back, he told his doctors that he often woke up with headaches, so they did a sleep study and found that his sats were dropping at night...hence the headaches. So ever since then he's been sleeping with 2 liters of oxygen, breathed in through a nasal cannula. Ever since he started sleeping with oxygen he sleeps so much deeper, better, quieter and wakes up with no headaches.

You may ask yourself, "quieter?!" And the answer is, "yes...quieter!" I'm sure most of you CF spouses, and maybe some parents, can related. There is a certain "snore" that Ronnie does sans oxygen. It's a half snore, have gasp sound, that is loud enough to make it hard to sleep. He's slightly loud when he's sleeping on his sides and really loud when he's on his back.

So I'm sure you're wondering why I'm posting this and what it has to do with me. I am the oxygen police. In the night if I hear loud breathing, I reach over and feel his face to see where the cannula is; when I get back into bed after feeding Mckenna, I feel his face; when I go to the bathroom and come back to bed; I check his face when I hear a "pufffshhhhhhhh" sound (which is almost alway the nasal cannula blowing into his eyes); I feel his face when he's breathing really loud. I feel his face and wake him to fix his oxygen at least 2-3 times a night. I do it for him (so he sleeps better) and I do it for me (so I sleep better not listening to him). Annnnd I also do it because when he's slightly awake I can say, "snuggle me," and he will! Hehe!

What's the point of this post? There isn't one. Other than maybe if you or your loved one wakes up with headaches it may be a good time to do a sleep study. And I'd love to hear from those of you who wear oxygen at night...where all have you found your nasal cannulas? I'm often shocked where I end up finding Ronnie's. Anyone have tips for keeping it in place?

Oxygen Problems

6:00am: Alright! Time for a fresh new week. Not that I was feeling fresh this morning, but I'm hoping my energy level starts to pick up. I didn't sleep well last night and woke up about a dozen times or so to mess around with my oxygen tubing. I would wake up with the cannulas blowing into my eyes, around my forehead, or one cannula in my nostril with the other out. My nostrils were also extra dry last night and possibly starting to crack on the inside cause I had a sharp pain inside of my nose every time I woke up. I guess it just comes with the territory. Sometimes you just have to take the good with the bad. The good being that I usually sleep like a rock at night now and I think the o2 has a lot to do with it. The bad being the bloody noses, pain, and oxygen tubing choking me out in the middle of the night. Oh well, gotta keep truckin!

The walk was alright this morning. I was coughing more than normal, but I was getting a lot up and it was clear in color. I still feel kind of tight so I need to really focus this week on opening these airbags up. My foot is becoming the bigger problem. Even with taking the day off yesterday, besides the morning walk, my foot was already in pain this morning. I really need to nip this in the bud, cause it will be tough to run a mile on one foot. I'm not sure what it's going to take, but I'll figure it out. Who knows, maybe by this afternoon it will be fine and dandy? I'll just have to wait and see. It did slow me down a bit on my walk, so it better shape up or I'll just cut it off.

Total Distance: 2.1 miles Time: 39'13"

3:00pm: I finally got to the gym today after a full day of working on some different stuff on the computer. It was legs and shoulder day which is never very fun. Today was no exception. My shoulders hurt from the very first lift, especially my left one. By the time I got to my last lift it hurt to put my arm over my head. I decided not to push it and only lifted the bar for my last lift to hopefully stretch it out a little. I'll be changing up my routine in May, and for my shoulders, this will include lifts that will strengthen the tendons and ligaments. I won't worry about the muscle for a while. It's getting to the point that I think I'm going to start to do damage.

I blasted my legs today. They were feeling pretty weak from the first lift on, but I challenged them on every lift and increased the weight. When I was done with my last leg lift, I literally had to catch myself on a railing when I tried to walk down some stairs. My legs completely gave out. They were absolute jello. It was such a strange sensation and in some kind of sick way, I enjoyed it. Current Weight: 188 lbs.

6:00pm: My legs never recovered from the workout early and by the time it came for Mandi and I to walk/run they still felt like they weighed about 500 pounds. I didn't want to just sit on my butt though, so we decided to do a quick mile. By quick, I mean, just a mile. We didn't walk it faster than normal, and in fact, took our time. The weather was gorgeous and we just enjoyed eachother and conversation. My left foot still feels a bit strained, so I'm really hoping that it recovers soon.

Total Distance: 1.0 miles Time: 18'17"

Total Distance Walked for Day: 3.1 miles