Friday, August 26, 2016

A Forever Home

It is with sadness and JOY that we send Baby S to a new home today. To be clear, the joy outweighs the sadness by a very considerable amount.

S was such a blessing in the short time he was with us. He was incredibly sweet and fit into our family with ease. We connected with him quickly and there are things about him that we will never forget and fondly recall. As awesome as he was, we were not the right home for S. He needed to be in a home that would be willing to make him their forever son if he were ever able to be adopted. We're not that family. We're not an adoptive home right now and we're not sure when (or if) we ever will be. (As a side note, we're not closed to the idea of adoption as ultimately we don't feel it's our choice to make and God the Father will decide if and when it's right for us). For S, we're confident that his new home will be right where he needs to be. Can't go into a ton of detail, but knowing what we know, we can very happily let S go.

Thank you S for being such a blessing to us. Thank you for letting Mckenna carry you around like a sack of potatoes. Thanks for being such a great sleeper. Thanks for being Bennett's little buddy. Thank you for spending that special time with me when I fed you your bottle. Thank you for putting a smile on our face daily.

I hope you felt our love.

Thursday, August 25, 2016

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 ;)