Monday, January 30, 2017

The January Curse

Anyone else with chronic illness (or not) feel like every January you spend the entire month making insurance phone calls because nobody can seamlessly transition into the new year? Seriously, it is the very end of January and I can't even tell you how many hours I have spent on hold trying to fix insurance glitches. Somehow I had problems with my regular insurance coverage accidentally switching my info with my daughters and then disenrolling us because of it. This took maybe 4 hours total to straighten out via phone... seriously I wish I was joking. Thank goodness for cell phones and speaker phone so I could do chores while waiting! I can't imagine being tied to a corded phone in the kitchen and being on hold that long.

I also spent several hours on the phone to my insurance company that covers Orkambi. I am sure the fact that I have 3 different pharmacies doesn't help because one is bound to mess everything up. And no, I have no idea why I need three different pharmacies!! I used to get everything from one pharmacy, Walgreens, but then my insurance told me I needed to get Orkambi from Accredo. I am assuming they got a better deal on the cost of Orkambi? And then somehow I needed to go through Foundation Care to get Cayston and so now, yes I deal with three completely different pharmacies every month. As you can imagine it makes for plenty of month phone calls. Of course, Accredo (the supplier of my Orkambi) had to be the one that gave me problems. Despite refilling my Orkambi two weeks before I ran out I am now down to 4 days of the medication and still no word on when they will get their act together. My clinic even called a few times to try to help me out, but everything is moving so slow. Since the drug cost $21,583 a month (yes, you read that right, it cost $258,000 a year) I am probably not going to be able to pay out of pocket. Ha!

The most frustrating aspect of this whole ordeal is that I have the exact same insurance as last year! So you wouldn't thin it would be that difficult, but apparently it is. And the even more frustrating issue is that every single year for the past three years I have had some issue that took the entire month to resolve.

I have no idea what I am going to do with all my free time in February when I don't have to spend all day every day on the phone!

Wednesday, January 25, 2017

Slow Motion

There was a time in my life that I would start a new workout routine and instantly my lungs would respond. I remember being so amazed when I started swimming again after a long break and my lung function jumped to some of the highest levels I had seen in a long time. I naïvely assumed that this meant that if people started exercising they would absolutely see positive changes in their lung function. See, the problem with CF is sweeping generalizations just don't hold up. What works for you doesn't mean it will work for someone else and even more mystifying is what works for you now may not work for you later.

About two and a half years ago. I had just gone through a horrible time in my health and very slowly started working out again because it was the first time in a long time my body would even allow me to work out. I started with water aerobics and had trouble keeping upon with the 60+ year old women in my class. Seriously, I was half their age and most of them smoked me in the pool with workouts. Humbling to say the least.

I eventually worked up to swimming laps. I did about 15 laps and took minute long breaks between each laps to catch my breath enough to try another lap. I was humiliated and ashamed that I was the youngest person in the pool and yet everyone's beautiful continuous laps that started long before I arrived at the pool and continues far beyond the time I left made me feel weak and broken. I would repeated excuses in my head as I did laps, "I have 30% lung function, but when I was healthier I could swim like you too," as if the other swimmers could read my mind and would be less judging when they heard my silent explanation.

I made progress and started swimming for about 15 minutes with fewer breaks although I only managed to do breaststroke (the easiest stroke for me) and hadn't built up the lung power to try front crawl. I was feeling less ashamed and humiliated until and older woman made a comment, "You are like my husband. You work out for about 15 minutes...I guess that is all you need." She was more talking out loud than saying it in judgment, but I remember feeling like I never wanted to show my face there again. I wasn't being lazy and working out as little as possible, it was all I could manage!

Eventually, swimming got easier. I started swimming 40 laps (front crawl!) and often only stopped because my oxygen sats dropped too low and forced me to stop. Over time, I slowly worked up to 50 laps, then 60 laps, and currently I do 75 laps before I call it quits. I don't stop between laps and no longer need to pull myself from the pool because of oxygen issues.

And as for my naïve assumption all those years ago? Over two years my lung function hasn't budged even 1% point. Not yet, at least. I think about how hard it was to do two consecutive laps two years ago and now I can do 75 in a row and it is hard to believe my lung function hasn't changed. However, I know my lungs have changed! They are in much better condition than they were two years ago. I know my oxygen saturation is better and overall my lungs are healthier and clearer. I may not have been rewarded with higher pfts, but I do believe exercise is allowing me to have a good quality of life despite my low lung function. Also, when I am in the pool I don't feel sick, I feel strong and healthy and powerful now. That is something, as someone with CF, I don't often feel out in my regular life. So emotionally and mentally it helps me too. I guess when I think about all the benefits exercise has given me, I can't be too disappointed that it hasn't helped my lung function (at least not yet...).

Monday, January 16, 2017

My Fitbit Proved I Was a Lair

I think of myself as an exercise conscious person who prioritizes my health. So when I got a fitbit I was curious as to my results, but assumed I would be in pretty good active standing. My fitbit proved I was a lair! After a few weeks of using the fitbit (omitting the week we got the stomach flu) here is the honest truth of my exercise\self care.

The Good:
Sadly, this is the only good news my fitbit had for me! I have the fitbit flex 2 which means I can swim with my fitbit and it keeps the stats of my swimming workout which I love! The fitbit told me I actually swim much further than I was telling myself. When I changed gyms years ago I went from a gym that had an Olympic sized pool to a gym that does not. The drastic size different always made me downplay how much I swim. Not only do I swim a further distance than I thought, but I exercise longer than I thought. I always said I swam for 20 minutes (I never time it and just try to get to the gym, swim, shower, and dress within an hour), but my fitbit let me know I swim continuously for 30 minutes.

The Bad:
I am much less active than I thought! To be fair, it is winter and it has been cold and very rainy. Although we usually still get outside to play and walk despite the rain we just don't last nearly as long as when the weather is nice. Also, my winter garden this year is pretty basic and filled with food that needs almost no care (garlic, lettuce, peas, and perennials) so I am not spending much time out there. However, I was shocked that most days I struggled to get 10,000 steps. And without making too many excuses, swimming doesn't give me step credits (obviously) so despite working out every morning when I get home from the gym I have only logged ~100 steps from the parking lot and changing room.

The Ugly:
I was also curious about my sleep because I know when I wake up early to swim I am probably not getting as much sleep as I should. I had no idea how bad my sleep stats really are. I average around 6 hours a night. I also have a few wakeups (which I knew). I also have a lot of restless sleep, which I can't really help and assume everyone does. I was just shocked at how few hours a night I get. No wonder I feel so tired all the time! Lack of sleep and CF really aren't a great combination so I am now consciously trying to put myself to bed at a more reasonable time for my early wake up time.

Now that I know where I lack when it comes to leading a healthy lifestyle (SLEEP and walking) I am hoping to make changes to lead a healthier and more active lifestyle!

Friday, January 13, 2017

Altitude Testing

It has been five years since I have been on an airplane. How sad it that? Well, that is about to change in a big kind of way. However, my lungs have significantly declined over the past five years and so I was concerned that if I try to fly, my oxygen saturation may tank. I really don't want to be responsible for grounding a plane so I decided to voice my concern with my doctor. We decided that altitude testing would be appropriate before I step foot on a plane.

I wanted to share what altitude testing consists of for anyone that may find themselves in a similar situation or if you are just curious. Altitude testing is supposed to simulate what breathing feels like at 8,000 feet which is how high most commercial planes go. I was super nervous for the testing, not because I was worried it would be a difficult test, but because I really wasn't sure I could pass which would mean I would require oxygen to fly. My oxygen saturation on room air is still really good, 98%, but my lung function being around 32% makes me more likely than someone with good lung function to struggle with any changes in altitude. I also had a quick panic while waiting to be called back for the test because my legs were a bit (lot?) prickly as I get lazy with shaving in the winter and I panicked I may be asked to change into a gown!

When I finally got called back I quickly relaxed realizing there was no need to change from my street clothes. Whew! There were two RTs waiting for me, but they were waiting on the doctor who had to be present during the test in case something went wrong. After signing all the consent forms I was hooked up to several monitors. There were 5 heart monitors, a pulse ox (on my forehead! Apparently my hands were too cold and not reading well so they wrapped a pulse ox reader to my forehead), a nose cannula, a blood pressure cuff and finally a mask that looks exactly like a bipap mask (or so I am told because I have never used a bipap). The oxygen cannula was used so that if any point during the test my oxygen SATs fell below 89% they would slowly administer oxygen to see what amount of oxygen I would require while traveling via plane.

After everything was set up they turned on the mask. Apparently, air with a lower amount of oxygen (to simulate the air on a commercial plane) was being blown into the mask. I couldn't feel any air being pushed through the mask, but they made me sit there for a few seconds to watch my oxygen saturation. They asked how short of breath I was using a scale from 1-10.

They then asked me to talk because they want to simulate what a plane ride would be like and likely I would be talking at some point. Although I am not a shy person randomly chatting to three men while having wires protruding from your head, all sides of your body, and while wearing a huge mask was not totally in my comfort zone. Luckily, everyone was nice and I got in a flow of telling them about our future vacation. Although about every 60 seconds one of them had to interrupt to ask me about shortness of breath and they often looked away to check the monitors. So basically, I was chatting, but wasn't really being listened to which made talking feel somewhat pointless (even though I know I was doing it in the name of science!).

My oxygen was fine so they made me stand up and march in place (while talking) which again was somewhat humorous considering the monitors. Every one minute I was asked about my breathing and every two minutes I had to quickly sit down when the arm cuff started reading. Oh, to be a fly on that wall, I am sure the whole thing looked so absurd!

After a few minutes my oxygen was still fine so they had me sit and stand (like squats) over and over. The told me that if this didn't drop my sats nothing would. My oxygen saturation hung on through the squats although they did hit 89% which means my oxygen was only 1% away from being considered too low. Luckily, I likely will not be working out on the plane. At the end of the test they congratulated me because I passed and could fly without oxygen!! It was such a huge relief!! They did say that if I were to get sick before the flight it would be best to postpone because a respiratory infection may bring my oxygen saturation down. They did, however, feel that even if my oxygen dropped a little I would probably be okay to fly, but should bring a pulse ox reader and limit my activity. Of course, on the way to a trip it is much easier to cancel than on a flight home especially since I couldn't extend my stay longer than I had medication supply for so hopefully I will stay healthy on my next vacation.

Sunday, January 8, 2017

Silver Lining

A few days after New Years our family came down with a stomach bug. I will spare you the details as I am many of you are much more familiar with the stomach "flu" than you would like to be. However, despite the horror, there was a silver lining I thought I would share.

Kaylee caught the bug first. I ended up as Kaylee's head nurse because my husband was at work for most of the day. She was very sick for about two days. Of course, as it often happens, as Kaylee started to improve I started to feel a little off. And one evening I passed on an old fashion and a movie to lie in bed (or roll around in bed trying to find a comfortable position) while gripping my stomach. Needless to say I was hit hard and as with everything, I got a weird complication in that my fevers got out of control and I slept about 20 of the 24 hours that made up Thursday.

Kaylee, who was on the mend decided to become my head nurse. She had slept in our bed the previous two nights (running a sick child to a toilet is much easier when you are next to them) so when she woke up and found out I was sick she announced she would be right back and ran from our room. A few moments later she walked in and presented me breakfast in bed. Of course the tray was a baking sheet, the plate was a coffee filter (she can't reach the plates), and the breakfast of choice for a person with the stomach flu was a easy to digest pile of mixed nuts. And she presented me a plastic disposable water bottle which gave me a moment of pause because we don't buy disposable water bottles, but she assured me she poured out the old water and put in fresh water.

After breakfast Kaylee informed me that if I got sick she would hold my hand so I wouldn't be scared. As her mother I never left her side when she was sick and miserable and it was heart whelming that she wanted to be there for me as well. Of course, when I did get sick she dutifully came with me to the bathroom. I took one look at her face and told her she could leave if she wanted to and she ran out of that bathroom as fast as her four year old legs could carry her. It is the thought that counts, right? By the time my husband got sick Kaylee had lost some of her empathy because with both parents sick, being a kid just isn't fun. However, I loved seeing the thoughtful side of my daughter who wanted to take care of her mama (even if she needs to work on her follow through).

Sunday, January 1, 2017

The New Year

2016, as with every year, was a mixed bag of good and bad. However, overall I have to say that 2016 has been kind to us. My health was the best it has been in several years (thanks, Orkambi) and outside of a health blip in the summer I was pretty stable. Kaylee and my husband are healthy and we are all happy, what else could we ask for?

There are lots of changes coming our way in 2017. A major life change is in the works and I am sure a dozen more changes that we are completely unaware of will be hurled our way as life seems to be unpredictable and full of surprises (both good and bad). I am hoping for continued stability with my health and lots of love and laughter with my family in 2017. I hope everyone reading this blog finds peace, love, and health this coming year.