Kalydeco, Five Years Later

I've been on Kalydeco for five years (August 30th)! I can't believe it's been that long. This "miracle drug" has definitely changed my life for the better, but it hasn't been a cure, especially lately.

I've had a rough month, well, a difficult last 7-8 months, really. Ever since Calvin was born, I've struggled to get my lung function back up to my baseline of mid-80s - it's been hovering in the high 70s the last two times I had my PFTs done (which really isn't that much of a decline, but it is to me). I've been on Cipro twice, May and August, Cayston doesn't seem to be working as well for me (causes hemoptysis), Tobi makes me feel super tight and makes me cough all night long. I'm getting frustrated and I feel like I'm slowly running out of options (that aren't IVs). I've also been battling on & off hemoptysis for the last month which has been really annoying. I don't feel terrible, but I don't feel clear either. I just want to go back to feeling normal (my normal). I'm a little nervous about my appointment next week, especially since our whole family has this disgusting productive cough.

Overall though, I feel like Kalydeco has been amazing for me! Before I started taking Kalydeco, I really struggled to gain and maintain my weight, I was around 108-110 lbs. My lung function fluctuated between high 70s and mid-80s. Today, my weight is steady around 130-135 lbs and my lung function has been in the mid-to high-80s until earlier this year. Considering that the average CF patient typically loses a bit of lung function each year, the fact that I've been stable for the last five years is a huge success!!

I've had two full-term successful pregnancies (and our angel babies), maintained a full-time career of teaching, started my Master's degree and maintained my health.... I'd call that a win! All thanks to two little blue pills per day (plus all of my other treatments). Unfortunately, it seems like CF is starting to show its ugly head while I'm trying to be busy living my life lately. I hope that my doctor and I can come up with a new plan of attack because I have way more living to do and I'm not going to let this hiccup bring me down!

**Oh, and one of the CF nurses just emailed me on Friday asking if I wanted to do another round of genetic testing to see if they can figure out my second mutation (I have G551D & the other is unknown). Of course I enthusiastically replied YES! I'm so curious to know what the other mutation is and if we'll get anymore information when we find out. :)

Ketchup

Hello out there! I'm still here, alive and well. I haven't posted in a while because I had been doing a lot of posting on my Colleen's Friends & Family Facebook page for Cystic Fibrosis Awareness Month. Within the last month, I've finished my sixth year of teaching, did a two week round of Cipro, found out I've been approved for the Monarch Vest, and had an amazing turn out for Great Strides.

The last post about my health discussed how I was trying a not-as-strong antibiotic that was breastfeeding friendly. Well, I took it for two weeks and ended on a Saturday. By Monday, I was already feeling crumby again. I don't know if the antibiotic just didn't kick everything, or if I caught something over the weekend, but I just wasn't back to feeling how I wanted. I decided, despite the difficulties with breastfeeding, that I needed to go on Cipro. So, for the last two weeks of the school year, I pumped and dumped while at work, and Calvin got extra frozen milk I had pumped earlier while he was with the babysitter. Aside from the nasty case of sun poisoning I got on my legs, I'm happy to say that I'm finally feeling back to normal lung-wise since having Calvin almost four months ago. We'll see what my numbers look like at the end of this month.

Later this week, a Hill-Rom representative will be coming to my house to bring my new Monarch Vest and will show me how to use it! The Monarch Vest is a portable, battery operated Vest!! Which means anytime we go out of town for the weekend, I don't have to lug my machine, tubes and Vest!! I'll be sure to post pictures once I'm familiar with it and use it for the first time. I've been trying to get a portable Vest for a few years now, so this is really exciting for me. :)

Another really exciting thing to share is the success of Great Strides this year!!! Our team walked in the Champaign, IL walk at the beginning of May. This was a new site for us, but I was a little bummed to see the turn out wasn't as large as I expected. Although, our team was wonderful!!!

We had over 30 walkers and raised over $3,000!! I'm hoping we'll be able to reach our goal of $5,000 before the year is over. I want to sincerely thank everyone for making the trek to Champaign to show your support for the Cystic Fibrosis Foundation, everyone fighting with CF and for me. It truly means a lot to me that you show up and walk with me & my family. :)

Last week wrapped up the end of my sixth year of teaching. This was my third year teaching third grade and working with my amazing partner. I'm sad to say that she's leaving our building, moving on to bigger and better things (she's going to be a kick-ass union president!), so I'll be getting a new partner this fall.

I'm also about half way done with my Master's program - woo hoo! This summer I'm taking my fourth class (research and statistics, ew!) and will only have three left (2 in the fall, 1 in the spring) until I'm done!!! So far, I've maintained a 4.0 GPA which I'm pretty proud of! I can't thank Lindsey and Alycia enough for doing this program with me; they're definitely helping me get through this!!

So now, here we are, the first week of June. I've already worked 2 days of my summer, with 11 1/2 days of professional development scheduled -- who says teachers don't work over the summer?! But in between PD and Master's assignments will be lots of time with my babies! I can't believe that at the end of this summer Anna will be four years old and Calvin will be six months old!
Today we signed up for the summer reading program at two local libraries, enjoyed a walk downtown, went to a new park and went to Steak n Shake for lunch. This afternoon, Anna and I created a Summer To-Do List, and we are slowly filling up our summer days. I love being able to spend this time with my kids because I feel like I miss out on so much during the school year.

Clinic Appointment Today

This picture basically sums up my appointment today! 

I was lucky enough to have my appointment moved up a couple weeks to today during my spring break so I didn't have to miss a day of work. It was wonderful because it was not a CF clinic day, meaning there weren't several other CF patients waiting and sharing germs in the lobby! It also meant that I got in right away! And, as a bonus, since things were going so smoothly, I decided to get in my chest x-ray today and that lady was super fast with it!

I'm currently nearing the end of my two-week Cipro cycle, but still not feeling 100% lung-wise yet. I'd say, I'm more like 85-90%. I'm still having a bit extra mucus than normal, and some at night which is not normal for me, so I don't feel like I'm quite ready to be done yet with the antibiotic. This is the first time I've ever asked about extending my antibiotic cycle, but I feel a few more days (up to a week) might be just what I need. The nurse practitioner agreed, even though my numbers looked good today. I appreciate that she respects what I have to say and trusts how I feel. The one good thing about my mail-order Cipro issues I had, is that now I have a ton extra on hand, so extending my meds another week isn't going to be an issue. I'm also going to order Cayston as soon as I can and start it a little bit earlier than scheduled.

One thing we did discuss today though, is that my lungs and pseudomonas (bacteria my lungs culture) are slowly becoming resistant to Cipro. I used to have a "moderate" resistance to Cipro, but according to my last culture in January, I'm now "intermediately" resistant. Unfortunately, Cipro is the only oral antibiotic that fights pseudomonas. Once I become completely resistant, that I'm left with IV antibiotics as my weapon against infections. I wasn't too happy to hear this, but I think (hope) I still have lots of time before I need to really consider that. Thankfully, I was able to make it almost seven months between needing Cipro, so hopefully I can make it another 7+ months before needing it again. The longer I can keep between cycles and the less often I need it, the slower I'll become completely resistant.

So, now for the numbers: My weight is stable at 132.7lbs. My lung function is up all around and closer to my baseline, at 85% today. Of course, I'm greedy and would like to see them closer to 90, but 85% is about right for what I'm feeling right now.

Today, I asked the RT to record me doing a PFT today. These are the tests that I do, at least three times, each clinic visit to determine my current lung function. For people without CF, "normal" lung function is between 80-100%, so technically I have "normal" lung function...just have to do lots of treatments to keep it that way. Anyway, I know CFers often put a lot of pressure on themselves during these tests because they tell us our next plan of action and overall health. Follow this link which will take you to my Colleen's Friends & Family facebook page where you can view the video. :)

The Process of Getting Cipro

Thursday: I texted my doctor to let her know I was feeling off. I wasn't quite sure if it was allergies or an infection coming on. The plan was to have her call in a script for Cipro so I could have it on hand for the weekend in case I started feeling worse.

Friday: While at work, I felt like crap! My cough was changing and my sinuses were clogged. I decided I should run by Walgreens and grab the Cipro and begin taking it that evening. Unfortunately, when I got there, they said my doctor never called it in....ugh! So I got in touch with my doctor and she resubmitted the order. I called Walgreens later that evening to pick it up (even if I could just get a partial), but they said my insurance was putting it through mail order - seriously?! Who gets antibiotics through the mail?! How is that convenient at all???
So I asked the pharmacist if there was any way I could just get some pills to last me over the weekend, hoping my Cipro would come via snail-mail Monday. She was able to sell me SIX pills for $24! I had to take them because I knew letting this infection brew over the weekend without the extra antibiotics wasn't going to help.

Saturday: I took my second and third dose on Saturday. My cough was in the cough-constantly-with-no-mucus-production stage and it sucked!

Sunday: Took two more doses today.

Monday: Took my last dose Monday morning before work hoping there would be a package on my door when I arrived home with the rest of my Cipro.....of course there wasn't. This meant that I missed Monday evening and Tuesday morning's dose.

Tuesday: Lots of rattling in my chest, but it's tight and very hard to have a productive cough unless I practically choke/gag. Thankfully when I got home, the full dose of my Cipro was in my mailbox. I'll be starting back on it this evening.


**Moral of the story, MAIL ORDER PHARMACY SUCKS! It's NOT convenient to get a dose of antibiotics in the mail!!!! "Normal people" don't go to the doctor for an ear infection, strep, etc and get their prescriptions four days later in the mail. I just don't understand why this decision was made and who made it - was it insurance? Was it the mail order pharmacy? I suppose I could call both and figure it out, but I'm not in the best mood about it right now and do not feeling like trying to figure it out. All I know is, at least I now have six extra pills (since I had to buy some) from this mailed dose, that next time I feel an infection coming on, I'll be sure to put it in my mail order VERY early!

Health & Great Strides

I haven't posted about my physical health in a while, so I figure I may as well update you. The good news is that I haven't been on antibiotics since mid-September, which means it's been 6 & 1/2 months!! Bad news (or...not so fun news) is that the streak ends now. Over the last few days, I've had a sore throat and stuffy nose. I was hoping it was possibly just allergies, but today the frequency and consistency of my cough changed which told me it was time to bring in the 'big guns' - aka: Cipro.

I tried being proactive and got in contact with my doctor yesterday in case my allergy symptoms changed and I needed to begin Cipro over the weekend when she's out of the office. Of course, that couldn't go as smoothly as planned....I didn't get to the pharmacy until this afternoon to pick it up (because I wanted to start tonight after having crappy lung day today) and they told me they had no record of it - grrr!! So I called and texted my doctor who was as equally frustrated, but she kindly sent in the script again. Now I'm finishing up my treatments and plan to call Walgreens when I'm done to make sure it has arrived and has been filled before I go to the pharmacy this time.

Weight-wise, I think I'm hanging around the same weight as before I got pregnant with the boys. I know after I had them, I lost a few pounds, but the way clothes are fitting recently, it seems I've gained it back. I do not own a scale because otherwise I'd obsess over my weight, so we'll just see at my next clinic appointment.


Finally, I wanted to share about my Great Strides team this year. Colleen's Friends & Family will be walking at two walk sites this year - DeKalb and Bloomington. Every year our friends and family join us to walk and show their support for all people with CF and the CF Foundation. I'd guess we've raised close to $10,000 over the last five-six years together. The CF Foundation puts 90 cents of every dollar donated towards educating families, new programs and research for new drugs. Just this week, the CF Foundation release information on a Phase 3 Vertex study drug combined with Kalydeco has had very positive results!! This is where your donations go!!! This is why donations (and awareness) are so important! They're actually going somewhere and accomplishing things!

It's so exciting to hear of new drugs coming down the pipeline to hopefully be available soon for more and more CF patients. Unfortunately, all of these wonderful new drugs are still NOT a cure! I still have to do all of my treatments and take the same amount of medications as I did before I began Kalydeco (plus the two K pills daily). But the Kalydeco has helped keep my lung function stable for three and a half years, and helped me get to and maintain a healthy weight.

Anyway, my friends and family and I will be participating in Great Strides this year to help raise money for the CFF and more clinical trials! We'd love for you to join us! If you're unable to walk with us, and would still like to donate, all information can be found using the links below. :)

DeKalb info: http://fightcf.cff.org/goto/dekalb17

Bloomington info: http://fightcf.cff.org/goto/bloomington17

*All donations are 100% tax-deductible and truly, EVERY DOLLAR MAKES A DIFFERENCE!

A/C, Cipro & No Bo.

It's been a couple of weeks since having Fredrich in our classroom, and he seriously has been a life-saver! The last two weeks have been unbearably hot and having the A/C unit in my room has helped a ton with removal of humidity! It typically kept the temperature somewhere between 73-77*F which was really nice, but the amount of humidity in the hallways and other classrooms compared to mine was SO noticeable, and it really made a difference in the ease to breathe! It has cooled off this week, so we're giving Fredrich a break since he's worked so hard lately. :) My class has been SO good about having the air. They don't really know why I have it, but we've discussed not bragging about it and especially not complaining how hot it is when we go into the hallway or other rooms in the school, because we're very fortunate to have A/C. I did get Fredrich a few days before our Open House, so the families who came were able to see/feel the difference. Many parents just mentioned how cool it was, but not many really asked why. I did have this disclaimer on the board:

One parent read it and said, "Wow, you have CF?! I had no idea! I couldn't tell by looking at you. Some of the people I see (she's a surgical technician) are in bad shape." She was so sweet about it, and we talked about my health for a few minutes. It was a nice way to connect with her on a different level than just teacher/parent.
I don't like to wear a sign on my forehead saying, "I have CF", but at the same time, I don't mind share when it comes up. I figured the parents would be wondering why only our class had air and ask, but they really didn't! I think they were so overwhelmed by the heat they just wanted to get out of there! :)

A couple weeks ago, I also started two things: Cipro and "No Bo". I wasn't feeling terrible, but I wasn't feeling my greatest either. With the week of heat before getting A/C in my room, combined with my lower lung function results from my last doctor visit, I could feel it all catching up to me. I was getting exhausted quickly, so I realized I just needed a boost. I got in contact with my doctor and nurse and asked for a round of Cipro to help me out of this funk. Between that and the air in my classroom, I could slowly feel my energy coming back and I was starting to feel back to normal.

Unfortunately, I was on Cipro when we went camping, and completely forgot about the sun sensitivity, so I ended up with sun poisoning on top of my head (where my part is) and on my legs. Thankfully it didn't hurt too bad on my legs, it just looked bad. I was able to keep myself in the shade for the most part during recess duty and avoid it getting worse or spreading.

And finally - What is No Bo, you ask?! It's a running group called "No Boundaries" through a local bike and fitness shop. It's a 10-week program that helps runners of all levels. I'm in No Boundaries One, so our end goal "graduation" is the Turkey Trot in November. I decided to join this group with a mom-friend I met through Baby Talk, and I even got my next door neighbor to join with us, too! I really wanted to get myself back into an exercise routine, but I was struggling to motivate myself and hold myself accountable. With No Bo, I have the routine and accountability that I need. We have group work outs on Tuesdays and Saturdays, with homework in between. I just finished week three of the program and I can already notice a difference!

Not only can I get through the warm-up without my legs feeling like they're on fire, but I decided to run a 5K with Tim and some friends today! Chris, his girlfriend, Sammy, Tim, Chris's family, and I walked/ran a 5K benefiting CASA of Will County. Chris's sister is doing a marketing internship with their organization, so we helped her out by joining the race. Since signing up for No Bo, I thought this would be the perfect opportunity to get my "homework" in for the day by doing some walk/run intervals. Thankfully, I had Sammy there to motivate the heck out of me and I was able to run almost the entire first mile (~12 minutes) without stopping! That's a huge improvement from where I was three weeks ago! I'd guess we probably ran about 2/3rds of the race, with some walking in between. But I know I would have walked a whole lot more if Sammy wasn't there with me! Of course Tim flew right by us - even pushing Anna in the stroller - and beat us by about six minutes! But hey....we beat Chris! :)

Anna even (somewhat) participated in the Kiddie Run afterward. She was a little intimidated by all the other kids running, and the adults yelling cheering her on, but she tried!

This was before the Kiddie Run started!
She was at the bottom of her age group (2-6 year olds)

I'm really looking forward to the Turkey Trot in November! If I could almost run the whole 5K today, I'm positive I'll be able to run the entire thing by the middle of November! I've been run/walking two-three days a week and I love the way it's helping me clear my lungs. I'm really looking forward to my next doctor's appointment (which isn't until November) because I'll have been in this program for two months, completed a round of Cipro and I'm starting Cayston tomorrow. I hope the combination of treatments and exercise will really help me get my lung function back up where it should be!

End of First Quarter

Well, it's the end of the first quarter of school, and I'm beginning my second round of antibiotics this school year. I've felt much worse before starting antis in the past, but with my upcoming doctor's appointment, include a full PFT work up, I figured I'd nip whatever's brewing in there, even if it's just a small infection. It's going around our house right now - all three of us are having chest issues, sinus issues or a combination of both, so better safe than sorry. Nothing a little Cipro and Cayston can't beat.

In other news, I am loving my job this year!! Not that I haven't before, but last year's class was rough (and 5). This year I'm in a different grade level with a bunch of fun kids I've known for a few years, so it's made things very enjoyable despite all of the curriculum changes from the district. I'm very glad to be 'stuck' in this grade level now. :-)

And of course, a little blurb about our crazy little toddler. Yes, you read that correctly, she's practically a full-blown toddler now from talking, to tantrums, to getting into everything, and being so, so silly! I really can't complain when I say tantrums I just mean a five second whine/cry (with the occasional stomping) until she's distracted by something else. Anna's so busy these days trying to figure out how everything works and trying to climb on any surface impossible. We've been so busy and have been too much fun to update the blog. :)

My Recent Health - The Good, The Bad & The Ugly

What a better way to kick off Cystic Fibrosis awareness month than a health update. Last time I posted about my health, I was doing very well! Unfortunately, just a few weeks after that post it started going downhill. I caught a cold which turned into a chest infection, so I emailed my doctor about getting on Cipro (an oral antibiotic). Well, it took much longer than usual for her to get back to me and fill the prescription, and in the mean time my lungs were feeling it. That was the first time in a very long time, if ever, that it just hurt to breathe. I was exhausted and felt like shit. My doctor was hesitant to give me the Cipro because its not breastfeeding friendly, but I didn't care. I had spent the last six months building a frozen stash of breast milk for this type of situation, so I wasn't too concerned.
We figured out a schedule that she and I were both comfortable with, then she called in a ten day supply of Cipro for me. I would nurse Anna first thing in the morning, then pump. Then I would take my Cipro and pump & dump the milk while at work while the Cipro was strongest in my system. By the time Tim and Anna came home in the evening, I was able to nurse her. After she went to bed, I would take my second dose so it was strongest while we were sleeping. The annoying part was pumping & dumping and bottle feeding on the weekend, but it was worth it to get my lungs back to normal.

Fast forward another few weeks to the middle of March. I was laying in bed one Saturday morning and I feel the 'pop' and gurgle...and I knew what was coming next - blood. I've had lung bleeds before, but not like this one. I tried to do a couple small little coughs, but I could tell this was straight blood and it was going to be a lot. I ran to the bathroom and just coughed it all into the toilet so I could monitor the color and consistency. Finally after a few minutes of straight blood, it started turning thicker, mucus-like consistency, but still bright red. I knew I had to contact my doctor abut this one, especially when it happened again that night and the following morning. This was unusual for me, so I was a little nervous, but I was also confused because I was feeling well prior to it and it seemed like it came out of no where.
My doctor started me on extra vitamin K (helps clot your blood) for a week or so, to see if it helped control the bleeding. After about a week, I didn't have anymore large bleeds and the streaking (mucus streaked with blood) slowed and finally disappeared. Sometimes bleeds happen when a mucus plug becomes loose, when an airway gets irritated, or at the sign of an infection. Since I felt relatively clear, we just assumed it was a fluke and my lungs just being annoying...

Until it happened again about a week after I stopped the vitamin K. This had me worried, but actually mostly annoyed! I was angry that my lungs were behaving this way and I was stumped because there didn't seem to be a pattern of when the blood was coming - it happened in the morning when I was laying down, at work once when I bent over, it happened after treatments... so this had me thinking there must have been more going on than just low vitamin k levels.
I decided to call my doctor and pick her brain, with the intention of getting on Cipro again. She was just as puzzled at what was going on and was hesitant to put me on Cipro again because the specific bacteria in my lungs was slowly growing resistant to it. She said she'd let me try the Cipro for ten days (the 10th day I had a scheduled clinic appt) and then we'd go from there. She said if my lung function was as beautiful as it was in January, then she'd let me stop the Cipro. If not, then we'd have to take a different route - possibly IV antibiotics. THIS FREAKED ME OUT!
I've never been on IVs before and I didn't want this to be the first time. I wasn't ready. What would I do about work? How long would I have to be in the hospital? Would I have to give up nursing - I don't think Anna or I are ready for that. It had me worried, but I tried not to dwell on it too much. I started my round of Cipro on a Monday, and by the following Monday I was feeling great. I was positive that I'd blow my typical numbers on my PFTs on Thursday...
Until Tuesday I woke up with post nasal drip and a sore throat...seriously?! 'Okay', I thought, 'this is just seasonal allergies, no big deal'. Then Wednesday rolls around with a lovely dry, itchy throat cough all day, UGH! I had a tight chest and I wasn't producing any mucus, which isn't typical for me, but I still wasn't feeling awful, but I was getting a little worried about my looming appointment the next day.

The morning of my clinic appointment, on the drive, I developed a mucus-producing cough so I tried to get out as much as possible. When Anna and I checked into the pulmonary section, we only had to wait a few minutes for a room which was pretty nice. We even got a room with a window which was excellent entertainment for a busy 8.5 month old baby. Soon after getting put in a room, the RT showed up with the lovely PFT machine...I did my first PFT and blew an FEV1 of 83% - thank goodness!! I was so worried they were going to be much lower. I did two more blows with the exact same result and felt a large weight lifted off my shoulders. Yes, my PFTs were down about 5%, but my weight was actually up about a half pound and my lung function didn't drop dramatically, so I felt that I was in the clear for IVs. Until...Anna and I were looking out the window, watching the traffic go by and I coughed up blood, right there in the doctor's office. Ahhhh, when was this ever going to end??? Thankfully it was a small bleed that turned into mixed blood and mucus fairly quickly, but I was so nervous to show the doctor. I thought for sure that she was going to recommend IVs now.

When she first came in the room, of course she had to say hi and talk with Anna before we discussed my health. :) She was pleased with my weight, but reminded me that my lung function was down. We discussed, in depth, everything that had been going on over the last couple months and brainstormed several ideas as to why it was happening. Thankfully, she's so wonderful and trusts me and how I tell her I'm feeling, and she was not going to put me on IVs right then and there, since I was feeling well and it seemed like I caught something within the last couple days. PHEW!
We decided to attack from all angles - I would continue my Cipro for another week (21 days total), adding Cayston (inhaled antibiotic) on top of it. We were hoping the overlap of Cipro and Cayston for about a week would really knock it out. I was also going to start Nasonex to attack whatever was going on in my sinuses that was not allergies. Then I'd come back in a month to see how everything worked and how I was feeling, and possibly do a round of Tobi (different inhaled antibiotic) just to keep things clear.

She was exhausted from my appointment, too!

So here I am, on day 20 of my Cipro and day six of my Cayston and I'm slowly starting to feel better. Whatever I caught right before I went to the doctor really hit me hard, and I'm glad we came up with this treatment plan because I have never coughed so much mucus out each day as I have for the last week. I think the combination of Cayston and Cipro really has been working. Fortunately, I haven't had any bleeding since the day at clinic, but I'm definitely not back to 100% yet and I'm really hoping the Cayston will help get me there by the end of the month. The talk of IVs and them being a possibility in the nearer future than I'd like still freaks me out a bit, but after conversations with Tim and several of my cyster friends, I am trying to remember that IVs are just another tool in the toolbox, not the end of the rope. I'm very fortunate to be this healthy at this age and that there are still so many antibiotic choices available to me.

Thankful November, Week 4

Each day in November, I'm taking the time to post something that I'm thankful for - no matter how big or small - then I'm posting them at the end of the week. Click these links to see week 1, week 2, and week 3.

17) Today I'm extra thankful for the roof over our head! There were a lot of severe storms that tore through the Midwest today, and thankfully they stayed clear of our town and house.

18) Pandora radio - sounds silly and insignificant, but I love it. I don't want to have to pay iTunes a dollar per song to download (legally). I love that I can change the station depending on my mood (ie: Michael Buble Christmas - I'll have to bust that one out soon...after Thanksgiving!) and that it introduces me to new songs. If you haven't caught on - I love listening to music! :-)

19) I'm very happy to be done taking my Cipro! Although I'm still not feeling 100% (I need to get better about doing extra treatments), I'm just glad that I'm not taking Cipro anymore. I am also happy to report that this was the first time, that I can remember, that it didn't give me huge tummy troubles! I'm wondering if that's because I'm now taking daily probiotics....which leads me into tomorrow's post.

20) I'm super thankful that someone created probiotics!!! They've completely changed my life! I am no longer extremely gassy and/or bloated daily....or ever! I feel like a "normal" person as far as that's all concerned! I now go to the bathroom once...did you read that CFers, ONCE a day and feel SO much better! If you are not taking them, I strongly  recommend talking to your doctor about what benefits they could have for you!

21) Modern Medicine/Research - I'd probably be dead if it weren't for all of the advances in medicine and research today. I know that sounds terrible, but it's true. If I were born with CF 50 years ago, pretty much all of the medication I take wouldn't be around. I'm very, very lucky and thankful to have access to the medications, and team of wonderful doctors and nurses, that I need.

22) I'm thankful for a night out. I'm not usually one to go out much, I tend to be a home-body, but I'm glad I went out tonight with some teacher friends. We had a lot of laughs and a great time. :-)

23) Today I'm especially thankful to have heat! With it being about 30 degrees today, I'm very glad that we have that luxury. And congrats to my cyster, Megan, who ran her first 5K today in this terrible weather!! So proud of you! :)

CF Awareness Month Blog #4 - Illness & Admissions

Thankfully, this is something I don't have much experience with. Throughout my whole life, I've been relatively healthy for someone with Cystic Fibrosis. For the past 6-7 years, I've done a much better job taking care of myself and being proactive about my disease which I think has really helped keep me healthier, too. I've never been in the hospital since my surgery as a newborn. I am absolutely terrified for the day to come when my doctor tells me that my infections can no longer be controlled by oral antibiotics and that I have to start IV antibiotics.

Right now anytime that I catch a cold or develop some type of infection, I usually go on a two week round of oral antibiotics, typically Cipro. (I also alternate each month taking an inhaled/nebulized antibiotic TOBI - done every other month so I don't build up a resistance) And each time I go to my CF clinic appointments, I have to give a sputum (mucus) sample so they can test it in the lab to make sure my mucus still susceptible to Cirpo and a couple different oral antibiotics. Over time, a CF patient's body can build up a resistance to antibiotics, then you no longer have them as a choice when you get sick. Once you're body has built a resistance to all oral antibiotics, the only other choice is to receive them through IVs.

As of my last appointment, my mucus is still susceptible to all oral antibiotics...thank goodness!

No Such Thing As Colds

Only eight more days until winter break where I have two weeks off! You'd think I'd be super excited right now, but I honestly think I'll get bored over break and miss my little ones...I know, I know, you probably think I'm crazy! :) But they're just so darn cute...until they're hacking up a lung in my face!
Our entire school is sick - it's disgusting! And I thought somehow it had missed me....wrong! Unfortunately, I've caught whatever it is, too. Luckily, I haven't had a fever,  throwing up, or flu-like symptoms (*fingers crossed*), but of course it started in my head (nasal) like it always does. And of course this time I told myself, It's just a cold, you'll get over it. Just keep doing your treatments and drink lots of water.  Wrong!

It all starts the same way for me, every time - you'd think I'd learn by now: starts with painful, sore post-nasal drip for a couple days **this should be my que to start anti-biotics**. Then it turns into a stuffy nose (when I think I just have a "normal-people cold"), then it turns into a dry-hacking cough (had this by the end of the night last night) and now a very tight chest with nagging cough (as of this morning). EVERY TIME it progresses in the same way, and every time I think I'll be able to kick it in 3-4 days like a non-CFer, that it's just a cold. Well, it seems that in my CF world, there's no such thing as "just a cold" anymore.
So I caved in this morning and emailed my doctor and nurse, then later I'll call the doctor and possibly Facebook my nurse - contact them in every way possible - so they'll call in another lovely round of two weeks of Cipro. UGH! And if I have the same reaction to it that I did last time, any of the weight I've gained over the past two months will go right out the window.

This is why it's so important for me to have that 'extra weight', so that when I do get sick and my body is losing more calories because it's fighting harder, then I'll have a couple extra pounds to spare....well, this time I feel like I don't have those extra pounds to spare, so I'm really going to have to work on keeping this weight on! People think that it must be wonderful to have someone tell you to gain weight instead of lose it, but it's honestly just as hard for me to gain as a non-CFer to lose weight. It's not fun. Having to stuff yourself with 3,000 calories a day, hoping that you took enough enzymes for your body to absorb all of that food so you're not spending the entire day in the bathroom...yeah, that's real fun!

It's times like these that a tiny little part of me is wondering if I'm in the right field. I ABSOLUTELY love my job, but it just sucks because I'm exposed to so many germs. I'm not saying that I want to find another job because this is exactly what I want to be doing - it's just a tough field to be in when you have a health condition. I just hope that my health isn't impacted so much that my CF clinic results aren't good. I've got about 5-6 more weeks to get my body feeling the best for those PFTs.

Here's the CF-brain's thinking: Why can't I just have a normal 2-3 day cold like everyone else? How come I have to go on antibiotics every time I'm not feeling well? I just get so worried that I'm going to become resistant to Cipro because I was just on it in October. Being resistant to an oral antibiotic cuts down the others available to take when I'm sick. I HATE winter! I was so tempted to open my classroom window yesterday to get rid of some of that nasty germ-infested air, but I thought that probably wouldn't be too fun with sick kids and 30 degree temperatures. :) Maybe I need to invest in some Lysol for my whole room...don't think the Clorox wipes are enough...

Anyway, I will not let this "cold" ruin my weekend! We have a staff Christmas party Friday night, then Saturday we're going to visit some friends and Sunday we're going to the Bears Game! Yes, I'll be sure to bundle up. I didn't forget what winters are like in Chicago. Even though it'll be a busy weekend, I'll be trying to fit extra treatments in somewhere.

I'm sorry that this post has turned into a complete bitch-fest, but it just sucks and I needed to vent. I'm not asking for you to feel sorry for me, this is life with CF - the good, the bad, and the ugly. That's the purpose for this blog. :)

Pack on the Pounds

Courtesy of Google Images - not my feet!

I didn't realize how long it's been since I've posted until the other day. I've completed my round of Cipro and it totally sucked this time! I'm feeling better, but still tired from working all the time -- I never realized how time-consuming teaching was going to be, but I wouldn't change it for the world (that's an entirely different post though). I had the most side effects from this round of Cipro then I ever have, and it was not fun. I think I've lost a couple pounds from being on it. It made me very bloated and I was not absorbing anything that I ate -- sorry for the TMI. It was a really uncomfortable two weeks, so I wasn't exercising much. Who wants to go run a couple miles when they're bloated and tired?! Not me!!
So my plan is to do what my title says - pack on the pounds! Honestly, I don't think my exercise is affecting my weight too much, because I'm not running consistently. So that's not really helping my lungs a ton either. Once I get these next two 5Ks done, I'll probably put running on the back burner this winter to focus on gaining weight in a healthy way. Ideally for my body to be at it's healthiest, I should probably try to gain 8-10 pounds. I was weighed on Wednesday and I've dropped to 112.7! I haven't seen those numbers in a while. Unfortunately, I am comfortable with the way my body is looking right now (pretty flat tummy!), but that's not important. I know that I need to gain this weight back in case I need to go on antibiotics again over the winter.
One of my friends posted a picture of me on Facebook from a few weeks ago and I've completely lost all the 'chubby' in my face...I kind of looked sickly (in my opinion). That weekend one of my other friends made a comment about how 'super skinny' I looked and asked if I lost weight...so if other people are noticing, I know I need to get back to where I was. It's more important for me a to be a little bit chubby and healthy, than this skinny and getting sick. My goal is to be back into the high 100-teens (116-119ish) by my next clinic appointment in January so my doctor and nurse don't yell at me! :) They don't yell, but you know what I mean....even if it means I go back to Scandishakes...
So as much as I know running was making me feel better, now that it's getting colder and since I've been teaching, I've not been running consistently. Someone on CysticLife did suggest weight lifting to help build muscle which would increase my weight, so that's something I will look into over the winter. I never pictured myself doing any type of lifting, but then again, two years ago I never pictured myself running and I here I am about to complete two 5Ks in the next month!

This brings me to my question/suggestions I'm looking for: More so ladies, (but guys, I'll take your input, too) what do you do for weight lifting AT HOME? I'm not interesting in spending money to join a gym over the winter. Or what other types of fitness activities do you do in the comfort of your own home? I do have Zumba for the Wii which I may need to bust out since we're not living above anyone anymore, but I'd like a variety. Thanks! :)

New Color

**Note: Mucus talk, don't read if you don't want to learn about my mucus.
Last week I posted how I was starting to get a sinus infection or something. Well I increased my treatments to 3-4 a day over the weekend, 2 on Tuesday (back to work) and 3 yesterday. Unfortunately, I developed a dry, itchy cough as of Tuesday, so we (doctor, nurse and I) decided to start me on Cipro. I took my first dose last night and I'll be on it for two weeks. This morning after taking a shower, I had my first big cough of the morning and I coughed up a big glob of brownish, rust-colored mucus. This is definitely a new color for me. Coincidence that I took my first dose of Cipro before bed and this is what I cough out the following morning? Or is it just all of the extra treatments moving this (I'm assuming) old mucus out of my lungs? Or could it be that I walked two miles yesterday evening? Interesting...

Either way, at least things are moving around in there because I'd rather have a productive cough to get it out, than have a dry scratchy one where everything's just sitting down there. And I'll be honest, I was tempted to take a picture because I was so surprised by this, but I didn't know if that would just be too much... :-) Anyway, if anyone has any ideas of where this nasty colored stuff came from (duh, my lungs), or why it is this color, or if you've had this before, I'm very interested. I'm not usually one to discuss my mucus - I think it's totally disgusting and I HATE spitting - but this kind of blew my mind at 5:15 in the morning. :-)
*This is the first post that I've labeled 'mucus' after over 140 posts!

It's Been 5 Months

...since my last dose of Cipro, and I might have to start it up again. Darn, adorable, gross kindergarteners spreading their germs! :) It was bound to happen sooner or later, so I'm not surprised.
Last post I shared about my flu shot, and I'm happy to report that I didn't have any kind of reaction to it which I was happy about. But around Tuesday/Wednesday I was having a ton of post nasal drip and the back of my throat was getting very sore. I couldn't tell if it was just allergies or if it was the start of a cold, so I just tried to get as much of it out as possible. Then yesterday it started to work its way into my sinuses and today I've been sneezing and blowing my nose all day - I've also got a lot of sinus pressure.
This morning I decided to email my doctor and nurse to see if they could call in a 14 script for Cipro because I wanted to catch this before it went into my chest and became any worse. Well, I just got off the phone with my doctor a little bit ago, and she thinks that it could possibly be viral (since that seems to be going around right now) -- which means the Cipro really wouldn't do much. So I'm going to wait it out over the next day or two to see if it gets any worse or starts to move into my chest. If it does, she wants me to start my two weeks of Cipro and also to pair it with a month of Tobi. She also told me to increase my airway clearance to 3-4 times a day to try to get rid of whatever it is...ugh!
I know I've been so complaint with my treatments over the past year, but I hate increasing my treatments! I'm really good about getting in my treatments twice a day, but that doesn't mean I enjoy doing them or that I don't ever stall to do them each day. So now that I have to do three-four a day, that just drives me crazy. But I'm going to do my best to try to keep up with the extra treatments, especially because I have a three day weekend so I should have the time. I'd love to kick this cold or whatever it is out of my body without having to go on Cipro because I don't want to build up any resistance to it. I used to go on Cipro maybe once a year, and this would be my third dose this year, so lets hope I can get rid of it on my own with increased treatments. :-)

I'm Still Here!

Wow, I have been feeling so disconnected from the blogging world the past two weeks! Tim and I decided to cancel our TV and internet service because it was getting way too expensive, so we switched providers for TV but have yet to get internet....I never realized how much I followed peoples blogs and liked to write my own!
Things have been okay lately. Unfortunately I'm on my second round of Cipro (oral antibiotic) for the year because I got this nasty chest cold last week. I've been on it for almost a week now and I'm starting to feel better. I haven't been running in about a week and a half because I was feeling so crappy, but as soon as I get home tonight (using the internet at the library) I am forcing myself to go running! I need to get back out there because my 5K is going to be here before I know it...only about 5 or 6 more weeks, yikes! Gotta get my butt back in shape.
I've also been spending my time applying for teaching jobs like crazy! I am so determined to get a teaching job this year, even if it's out of state. I really enjoy what I'm doing now being a teaching assistant, but it just kills me that I still don't have my own classroom yet, so I really hope some luck comes my way this summer. I really don't want to live very far away from our families or my CF clinic, but I'm to the point where I really need to get some teaching experience under my belt and I'm looking everywhere for it. If all else fails, I'll be an assistant next year again, but I'm really hoping for better.

Oh, finally -- May is National Cystic Fibrosis Awareness Month (even though I like to spread awareness year round) and on the OWN network tomorrow (Thursday) May 3rd at 9/8c there will be a documentary called 65_Red Roses about a 23 year old woman named Eva with CF going through the transplant process. Here's the link to the trailer. I am planning on tuning in to learn about another CFer's battle with this disease and I really hope you do, too.

Not Off to the Best Start

I've debated for a couple days whether to write about what's been going on with me the past couple days because I didn't want to freak people out (I know a lot of my family reads this), but I figured if I'm going to have a blog about how I live with CF, it has to be the good, the bad and the ugly.

Our new years was pretty uneventful, Tim and I just hung out that weekend and it was back to work on Monday for me. The kids were a little tired, but as the week went on they got a little crazier. Luckily it warmed up to be about 50 degrees (in JANUARY, in northern Illinois = not normal, but welcomed!) on Thursday and Friday so the kids got lots of outside time! Thursday morning I was at work, the kids had just arrived, and my breathing started feeling funny - I felt kind of crackly, but really thin crackles: aka: not going to be mucus when I coughed, it was going to be blood. Now, I've coughed up blood (hemoptysis) before, where it's been mixed in with my mucus (streaking), but only maybe once or twice ever in my life has it been straight blood. This time, it was straight blood and it wasn't staying down. I was trying my hardest not to cough as I'm helping my two little guys write in their journals. Since there were several adults in the room, I excused myself to the staff bathroom and got out what I could. It was pretty scary for me because I've never had this happen like this, let alone at work.

I didn't want to tell anyone at work because I think that would totally freak them out. Luckily, about 30 minutes later and several productive coughs, it subsided, and it just turned into streaking. I knew I had to contact my doctor to let her know what happened because that is not typical CF for me. At work, my lunch is at 10:30 (so about an hour and a half after all of this happened), so I emailed my doctor from my phone (YAY for having a smartphone!). I stayed at work, kept my phone on me and emailed my nurse back and forth a couple times during the day to hash out a plan.

My nurse, Penny, told me to back off of my treatments to once a day for two days (to give my lungs a break), then bump it up to twice a day for two days, then 3-4 times a day if I can (to get it all out). I also started an oral antibiotic, Cipro, for 14 days. So Thursday and Friday I just completed one AM treatment, and as I'm writing this, I'm completing my first treatment of the day today. I usually do my HTS (hypertonic saline - nebulizer med - salt water, pretty much) with my AM treatment, but I opted to do my Pulmozyme yesterday morning as to not irritate my lungs even more. I just finished my first treatment of the day today including HTS, and it went okay. There's still a tiny bit of blood in my mucus, but I think it's starting to get better.

The thing that gets me, is that I've been feeling great lately, and this literally came out of no where! I was sitting at a table, helping my students when I just started randomly coughing up blood - kind of scary. Today, I'm feeling just fine, I don't have any increased cough (not more than usual) or any 'sick' symptoms, so I feel weird having to go on antibiotics and mess around with my treatments, but I know it was definitely a smart move to contact my nurse. I also decided to back off of my exercise for this week, to give my lungs a break, but I'm hoping to pick it up again next week. In the meantime, I need to figure out how I'm going to try to fit in an extra treatment or two starting on Monday. I work til 5:30, so my second treatment isn't going to get done until 6:00, so I guess I'll have to do another one right before I go to bed.

Tim's been giving me crap that I have to start my 100% count all over again because I only did one treatment a day for two days! Haha, yeah right! I'm going to keep it up there because I told him I was just following doctor's orders! :-)

I hoping that within the next week, this will all go away and maybe I'll be feeling even better than I do now with that round of Cipro. I hope I didn't scare anyone - really, I'm fine. :-)