CF Clinic Appointment

Yesterday was CF clinic time, and I've been so busy with end of the school year craziness, it came upon me very fast. Over the last three months I've been feeling really good, no lung infections, no issues, so I figured my appointment would be fairly normal and smooth.

Then the weekend before my appointment, I started having this really high belly bloating/pain. At first it felt like bloating, but just higher up under my diaphragm and ribs, so I tried to cut back on my carbs for a few days, but the pain still lingered and felt more like pain instead of bloat. So, of course, I reached out to my CF family for their advice, and some said it sounded like a bowel blockage. Well, even though I'm pancreatic insufficient, I've never had too many GI issues, especially not constipation or a blockage, so I was really hoping that wasn't the issue, but I kept it in the back of my mind and added it to the list of things to discuss with my doctor.

I also hit another little bump in the road Tuesday evening, when I felt the all too familiar 'pop' and 'crackle' of hemoptysis. Ugh!! I hadn't had any episodes since my last appointment in January, and now two days before, it shows it's ugly face. Luckily it ended up being very small and went away quickly that evening. But Wednesday morning, while at school, I had another, even smaller, episode. Thankfully it was small enough for me to spit once into a tissue (the kids were not in the room at the time), take a drink and it was done. So I backed off my HTS Wednesday morning, and only did half a dose Thursday morning, and it seemed to be gone aside from tiny streaks.

Back to the appointment- it was at 11:30 which is probably the best time for a clinic appointment. Late enough to where I can leave my house at 8am and miss rush hour traffic on the way there and back! They got me in right away, weighed me (124.5 lbs), pulse ox (98%), blood pressure, etc...all normal.

Then come the PFTs! Basically the whole point of the visit to see how my lungs are doing after three months. The RT who does the tests is super friendly and I really like her, which always makes me feel better. I stood behind the computer on the first one so I couldn't see anything, closed my eyes, plugged my nose and gave it my biggest, hardest blow & breath as I could. When I peeked around the other side, I had to do a double take because I didn't see any 87, 88 or 89s. Now the screen is filled with a big grid with numbers everywhere, but I knew where to look. Then it hit me...it said 92!!! I said rather excitedly, "Does that say 92?!?!" The RT wanted to make sure I was looking at the right thing, so she doubled checked her notes, but while she was doing that, I just kept checking to see that I was looking in the right column. I was! My FEV1 was 92%!! So of course I got very excited and said, "Yes, it does! Oh man, I don't remember the last time I was in the 90s!" (And I may have thrown my arms up in the air in excitement, too...) Anyway, I did two more tests - next was 92 and the third was 90. I was so happy! I asked for a copy and she told me I got a gold star for the day. :-)

Needless to say, my doctor and nurse were very pleased with my results. My nurse thought it was funny how much of a reaction I was having because it's only a couple points higher than last time, and I've always been so close with 88 and 89 lately, but it's totally a mental thing for me. This is a milestone that I've wanted to reach since I started this blog five years ago, that I honestly thought was a bit unrealistic at the time, but it was a goal to keep me motivated. I honestly cannot tell you the last time my lung function was in the 90s. In high school I was in the 70s, so it had to be sometime in my childhood. Its amazing!

After the excitement died down a bit, we got back to business about the belly pain and hemoptysis. Doctor wasn't too concerned with the hemoptysis, but told me to let her know if it comes back. As for the belly pain, we figured out its most likely reflux/acid because I've been waiting on my Previcid to be refilled for over a week now. She told me to buy over the counter Previcid until I get my prescription in the mail. So I went straight to the store when I got back in town and too the meds in my car hoping this stupid pain would go away.

Needless to say, I had a wonderful appointment yesterday. I am so proud of myself for sticking with all of my treatments - it'll be five months of compliance on May 1st.

Compliance + Kalydeco = awesome lung function!

Imagine what it could be if I started exercising regularly again.....need to add that to my list of to-dos between now and my next appointment. I was 90s to be my new normal! :-)

Stay tuned, next blog post will look at my chest x-rays!

Shoreline Classic 2012

I ran my second 5K this morning!!! And I completed it about a minute faster than my first one, woo hoo! Originally, Tim and I planned to run it together and we both signed up. But this past week, we had been running together and Tim developed shin splints. He's not one to complain about pain unless it's really bad and he was miserable, so I felt terrible that he had to come take pictures of me when he was supposed to be out there with me. He made a smart choice though because we were afraid he wouldn't be able to walk if he tried to run today! I was still really happy that he was there to support me while I chugged along the more-hilly-than-I-thought course. :) I didn't have such a huge adrenaline rush this time around, but I was still able to run the entire course without stopping, walking or re-hydrating until I crossed the finish line.

When I was in high school, if someone would have told me that I would be excited about running 5Ks in my 20s, I would have called them crazy. Also, if someone told me then that I was going to be healthier in my 20s, I would have called them even crazier because I thought it was nearly impossible to gain any lung function back. Now here I am feeling healthier than I have in a very long time, kicking CF's butt because my compliance and exercise! It just feels good to finally be taking care of myself because I want to, not just because I have to. I still don't absolutely love running, but the feeling I get when I cross the finish line is SO worth it. It's going to be a challenge this winter to stay active because I'm not signed up for any gyms, but I'll have to start looking into alternative exercise until I can get back outside.

I'm debating about signing up for the local Turkey Trot in November. I know it'll probably be much colder than it was this morning (which was high 50s-low 60s) which might not be the best for my lungs. But even if I can't run the whole thing that time, at least I'd be getting out there and doing it! Well...I think I just resolved my issue -- getting out there and trying is better than making excuses and skipping it. Stay tuned in two months for my third 5K, the Turkey Trot on November 17th!

363/364

The other day I was looking at my other pages on my blog (goals, heath stats, compliance, etc) and I realized a few things:

• I have met two of my goals this summer: Completed a 5K and I got my first teaching job! Woo hoo!
• I'm also getting pretty close to "making exercise a normal part of my routine". I'm still working towards this one because I did slack off a bit after my 5K in June, but I've been doing really good the past couple weeks with running two days, then resting one day.
• On July 31st, 2011 - one year ago today - I started my 100% compliance. Although in March I forgot to bring some nebulizers on a weekend trip, I have not missed one treatment otherwise - which means that I have completed all of my treatments for 363 out of the past 364 days.                                                   That's 726 treatments = 363 hours = 21,780 minutes = 99.73% of my treatments over the past year! Pretty darn close to 100%! I have to say I'm pretty proud of myself for accomplishing this! I hope that on March 5th, 2013 I am able to say that 99.73% will turn into a definite 100%!

Feelin' Good

I've been feeling great the past few days! Sadly, my spring break is coming to an end and it's back to work tomorrow, but I'm craving that routine again. I've had a nice week off with several days to myself, read a couple books, hung out with some friends, got some more Great Strides stuff figured out - overall, it was a nice, relaxing break.

This is the shirt I wear every time I go running because it
gives me the motivation to keep going and Out Run CF!

I also really pushed my running this past week, but more so the past couple days. The route I've been running around my neighborhood is about 2.4 miles and I've always walked and ran it. Yesterday morning I did part of my treatments - my albuterol to loosen my mucus and open my airways - then I went running. I ran (well, jogged) my entire route around my neighborhood without stopping or walking and I think that last few blocks I had a huge grin on my face because I knew I was going to make it! It was so weird because I was breathing great and my legs weren't killing me - it felt so good! When I got back I finished my treatments with my hypertonic saline (HTS) to make me cough up whatever was way down deep in my airways. This morning, I had to do the same thing! I wanted to know if it was just a fluke, or if I could really do it again. And I did! I did the same thing with my treatments, albuterol first, run, and now HTS. This run was much harder on my legs, but I made myself push through it because I knew that if I could do it once, then I could do it again. My plan is to keep running the entire route for a couple more weeks and gradually add in another block at a time until I'm up to 3.1 miles which is the length of a 5K. I've got 68 more days to be comfortably running a 5K and if you would have asked me a week ago if I'd be ready, I would have thought it would have been a close call, but now I'm sure that I'll be able to do it! I never thought I'd be a good runner and I wouldn't consider myself one now, but I'm just so proud of how far I've come since the fall when I started all of this. Go me!

Go Me, again! (And Other Things)

I'm sorry, but I have to brag again about my awesome trip to the gym today. I stalled for as long as I could this morning to go because I hadn't been there since last Wednesday, so I thought it was going to be really tough. I stuck to my normal routine - run a mile on the treadmill, then do 10-15 minutes on the elliptical - except this time I ran a mile and a half on the treadmill without stopping!! I know this may not seem like much, but on November 15th, I ran a whole mile straight without stopping, and since then, I've been making myself run a mile each time, but lately I've been wanting to go farther but always chickened out and stopped at exactly a mile.

Today the first 1/2 mile was kind of rough and I almost went to a walk early, but I pushed myself, a mile came and went and my legs weren't even hurting and I was breathing pretty well. I was at about 12:00 minutes of running at this point, so I set a goal to keep running while I finished the song "If I Die Young" by The Band Perry. Well, that song finished and I was still going! I was at about 1.35 miles, so I pushed myself to keep going to 1.5 miles and I did it! (It took me about 17 minutes.) Now that I know I can do it, that will definitely be my goal each time I go back to the gym! My ultimate goal is to be able to participate in a 5K (3.1 miles) sometime in the spring, summer, and/or fall - whenever there's a local one. Today I completed about half of a 5K on the treadmill, so I know that if I keep going, I can do it!

In other news, I am at 149 days of compliance with my Vest and nebs! It was hard to keep up with all of my treatments this weekend with the holidays and so much traveling, but I did it. From Thursday morning to Sunday night, Tim and I put over 700 miles on my car, but it was all very well worth it. We literally drove the entire state of Illinois, from near St. Louis to Chicago but we were able to visit so much family. Tim's oldest sister had her first baby (our second nephew), Isaac, on December 13th, so we were able to visit them on Friday, when he was only 10 days old - adorable!! 

We were also able to spend a lot of time with Tim's other sister, her husband and their son who's now a year and a half old already - also very adorable and funny! We saw everyone on Tim's side of the family Friday and Saturday, then on Sunday (Christmas Day) we traveled up to my parents house where we opened gifts with my parents and two brothers. Then we spent some time with our good friend Chris and his family for a little while, then hit our last party of the weekend with my mom's entire side of family where my cousin's twin boys (a year and a 1/2 old) kept us all entertained.

Luckily Tim and I both had Monday off (I'm off all week) because we literally spent the day being lazy - it was wonderful! This week I'm home doing some cleaning, organizing, rearranging, and unfortunately taking down some of the Christmas decorations. I'm hoping to see a couple of my friends before having to go back to work next week. I'm also hoping to clear out some room for this awesome bench Tim's dad built for us.

Click on the pictures to enlarge them

Go Me!

I'm sorry, but I have to brag a little bit about my workout today. I don't think I've sweat this much since we decided to go hiking in over 100 degree heat index in July. :) I ran a whole mile straight for the first time since joining the gym - in about 12ish minutes, ten minutes on the elliptical, and then I went on the treadmill for another ten minutes which included jogging, a sprint, then cool down. I really think the sprint did wonders for my lungs (I'm still coughing!). I was already exhausted by then, but the person next to me was really encouraging and we did a sprint together (I would have never tried that on my own!). I'm going to try to add that into my gym routine each time, I could really feel it - even though it was only for about thirty seconds. I just feel so good, I'm breathing really well right now; I can't wait to see what my PFTs are in another month!

Go Me!

Today was day number two for going to the gym! I know it's only day two, but I'm still proud of myself. I was exhausted after work today, but I made myself go because I knew that I wouldn't be able to go any other day this week because of plans/gym times. I found that the 30 minutes went by pretty quickly today while I was there and that I am pretty good at pushing myself to go a little bit further. For instance, I was running (more like jogging) on the treadmill and I set a goal to run for two minutes. Well, two minutes came around and I decided to keep going for another minute. I made it to three minutes and pushed myself to three minutes and thirty seconds. Now that might not sound like too much, but I was sweating my butt off and for it being my second day at the gym, I think that's pretty darn good!

I also noticed that while I'm there for the half hour, I really don't think about anything. It's a wonderful way to clear my head of the stressful (sometimes) day at work, and just focus on pushing myself and focus on my breathing. Yesterday I did my treatments before I went to the gym, and today since the gym was only open til 4:45, I went to the gym first, came home and took a shower, and I'm doing my treatments now. I felt like I was able to breathe a lot better and deeper yesterday when doing my treatments first. I was also able to cough and get everything out before exercising yesterday which I liked a lot better than today. Today while I was there, I had to cough a couple times, but I had no where to spit and I really hate when that happens. I'm glad that I tried both options (treatments first, then gym, and vice versa) because now I know which one feels a lot better to me.

This weekend's going to be pretty busy, so my main focus is going to be making sure that I don't skip any treatments to keep my streak alive. I'm at 9 1/2 weeks!!! GO ME!!!