Follow Ups & Flu Shots

Yesterday was quite a busy day. I had a follow up clinic appointment at 11am and since I'm out of vacation days I worked from 5-9, so I was up quite early to get ready (I'll be spending the rest of the week working through lunch to make up the other 4 hours). We left town at 9 and made it to Seattle just in time to check in.

My appointment went pretty well. My lung functions are up 6% which makes me extremely happy and helps to make it feel like all of the extra treatments I do now are worth it. It's a huge relief to have my lung function be closer to 90% than to 80%!

My husband tried to get video of me doing my PFT, but the RT kept standing in his way. One of these days I'll be able to get a video so I can show you just how much fun blowing into a machine is. I didn't have to do much else at this appointment since it was just a follow up to see how the Pulmozyme is doing. Now I just have to wait for the results of my sputum culture to see if I grow Pseudomonas and have to repeat the treatment for that.

I also got my flu shot, so I'm going to add a little PSA here about how everyone should get a flu shot. You may not think you need it because you don't fit the stereotypical mold of being sick or elderly, but it helps protect everyone around you. I loved that last year we had them done at work, since I figured it would cause more people to get them instead of having to go on their own and therefore I would get sick less. Unfortunately they weren't offered this year, so I'm hoping it's a mild flu season.

After I was released, we treated ourselves to some lunch and shopping to make a day of it in the city. Got back to town in time to get dinner and catch up on The Walking Dead.
**We didn't get to watch it on Sunday night because we were busy watching the Sounders smash Dallas in their playoff game;)

New Habits

How do you change 30+ years of habits (or lack thereof)? How do you deal when one day everything changes and you have to say to yourself “Ok, this is me now. This is my new reality.”?

I know I say this a lot, but I’m going to say it again. I’m really lucky with my CF. I know that I am and I can’t even express how deeply thankful I am for it. Most people with CF don’t get to live the essentially normal life that I’ve been able to lead up to this point. But right now I’m feeling like it is coming with it’s own set of drawbacks.

The Vest & nebulizer corner where I
spend time every morning & night.

If I had had to do chest therapy for my whole life I’d be used to it. It would be part of my daily routine that I wouldn’t think twice about. But now instead of coming home from a long day of work and crashing on the couch, I have to go put on my Vest and have my body pounded on for 30-45 minutes while I nebulize saline. Instead of hitting the snooze button a few times, I have to roll out of bed at the sound of an early alarm to do my nebulizer(s) and sinus rinse. Instead of doing whatever I want when I want, I have to make sure to plan around my treatments so I don’t miss any. Instead of taking days off when people come to town, I have to use half of my vacation days for doctor appointments.

Could things be worse? Yes, 100% they could. Do I feel grateful for the fact that I’m still relatively healthy? Yes, completely. But does that mean that I can’t grieve for the way of life that I’ve lost? I’m at the point where a lot of the novelty has worn off and I’m having to come to terms that this is how it will be forever. That more will be added down the road. I’m trying really hard to make all these new things a habit, but it’s hard. I’ll be the first to admit that I don’t have the greatest of will power. I have to lecture myself everyday about why I need to use the Vest. I’ve had my setbacks, missing a week or two by taking a day off and then repeatedly telling myself that I’ll start it back up again tomorrow. I’m having to learn that a life with CF means no days off from treatments and it’s a bit overwhelming.

I’ll make it through this period of change, I know I will, there just might be a little kicking and screaming along the way.

*My parents did have do chest percussion on me when I was a kid, but at one point the doctors said that we didn’t need to and even later in my life when I got the Vest it was a “do it when you feel like you need it” kind of thing, not a strict regimen.

Clinic Visit, New Meds, and a Pity Party

I know they're for everyone's safety, but
I really hate these masks.

I had a clinic visit yesterday and had intended to write a full post about what is involved in them. Turns out my visit was a pretty simple one. I didn't have to do most of the normal tests or see most of the usual people, they didn't even to a blood draw. Way to ruin my intended blog post guys!

However, one test that never gets skipped is the PFT (pulmonary function test). This measures the capacity of my lungs to see disease progression. Growing up my FEV1 was always about 115%, but over the course of the last several years it has gone steadily down to about 83%. My functions have been stable for the last 18 months, which is good since I don't want to see the decrease keep going. But I had my hopes up (probably a little too much) that between running and doing my vest & hypertonic saline nebulizer on a consistent basis I would see an increase. I asked my doctor if it's even possible to see an increase or if this is just going to be my new baseline. We decided to try adding Pulmozyne to my routine to see if that will help bump my numbers up.

Pulmozyme is one of those medicines that most CFers get put on, kind of like digestive enzymes,but I've never needed it since my lungs were so good. I'm pretty bummed that I have to do this and that everything I've been trying isn't helping. I can be pretty competitive and controlling, so I'm feeling a little defeated that I need to start this new med. Not to mention the fact that I now have to get up about half an hour earlier in the morning to do it since it's a nebulized drug. I'm still waiting on insurance/specialty pharmacy to get it, but hopefully it will help and I'll see a rise in my number next time.