Positive Thoughts Thursday

Yes, I realize it's not Thursday, but this is something I want to start this year -- it just took me a little bit to figure out what I wanted to call it.
Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm going to compile a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world. Here's my first list:

• I am very lucky to have access to amazing health care professionals to help me with my CF and now CFRD, to keep me in tip top shape.
• I loved having the past two weeks off of work. I was able to sleep in a lot, spend some time with Tim, clean the house, read some books and most of all: relax! 
• This week I talked to my awesome friend, Catie, about life. I love having such a wonderful, supportive friend. :-)
• Tim and I started exercising together this week. I want to gain some muscle weight and Tim is working on being healthier. Its been fun doing the work outs together and encouraging each other to be healthy. 

CFRD Follow Up

1/3/13 - See this post for the first part of the story

I had an appointment with an Endocrinologist today at a clinic closer to home. I thought it would be a good idea to get the opinion of someone a little closer (45 minutes away instead of 4 hours away where my CF clinic is). Well, the problem with that is their specialty is diabetes, not CF related diabetes...
I was a little frustrated because the first doctor couldn't find my latest Glucose Tolerance Test (GTT) results, which made me think she had no idea about me before even coming in. Then while she was searching the computer for the results, she asked me if I had any medical problems...uh yeah...which then confirmed that she knew nothing about me before coming into the room -- that just annoyed me. Anyway, she said that my A1c - don't know what it stands for, but I know its about your blood glucose - was 5.5. I was always under the impression that I wanted to keep that under 6, so I felt that was good news. When I asked the doctor about this, she said that the "normal range" is somewhere between 4.8 - 5.2 or something like that, so mine was slightly elevated which means I'm "pre-diabetic". Okay, great, no diabetes - wrong. Then she said that since my fasting blood sugar was 219 last time, and its supposed to be between 140-160, that means that I'm diabetic.

So, I'm under the impression that I'm just borderline diabetic?? They weren't very clear.

Either way, the first doctor wanted to do a physical exam (check neck, stomach, listen to my lungs, etc) and was surprised by my stomach scars and made a comment about my clubbing. I don't think she's ever dealt with a CF patient before... She told me that they'll probably start me on Metformin to help regulate everything and have me start checking my blood sugars at home. When I told her that I already talked to my CF doctor and she told me Metformin usually doesn't work for CF patients, the Endo pretty much ignored me and said that we'll try it anyway. She said, "Well you take oral antibiotics and those work? So we'll just give this a try." I just smiled and nodded.
I'm not trying to be rude, but I just don't like being seen by people who have no idea about CF or CFRD. This is something completely new to me and I just wish they had some CF background! 

Try and get that ridiculous song
out of your head now! :)

She then left and came back with another Endo who basically said the same thing. Since my 2 hour fasting blood sugar was so high, I'm considered diabetic. He would like me to get retested (good! - not sarcastic) to make sure this wasn't just one abnormal test, but he did say that the next test will probably come back abnormal, too. So, while I'm waiting to get my next GTT, I have to check my blood sugars twice a day, everyday. The nurse then came in with my new medical equipment, which you may recognize: Accu Chek Nano. The nurse did an awesome job showing me how to use my new friend and told me that she liked this one much better than another one she showed me because "its sexier".... Again, I just smiled and nodded. Haha!

These Endos want me to check my blood sugar twice a day, everyday and fax them the results after about 4 weeks. They also want me to get re-tested and follow up with them in April.

My plan: I'm going to check my blood sugar twice a day, everyday, until my appointment with the Endo from University of Chicago in a few weeks. This will hopefully give me and the U of C Endo more information about my daily sugars. I'm also going to schedule my next GTT as soon as possible (fingers crossed that I can get it at U of C on the day of my appts -- that's wishful thinking!). We'll see what my CF doctor and the Endocrinologist say in a few weeks...but I see this Accu Chek and I becoming close friends...

CFRD

11/30/12 - This was originally written on this date, but I wasn't sure if/when I wanted to share this on my blog - especially until I had more information. Look for the "follow up" story in the next day or so.

I saw this on Facebook and I just couldn't stop cracking up! 

Of course about a week later, I was told that I might be developing Cystic Fibrosis Related Diabetes (CFRD). But before I get ahead of myself, let me explain. For the past couple years, I've had to get Oral Glucose Tolerance Tests completed to see if I was developing CF Related Diabetes. Having CF makes me more likely to develop diabetes. And I don't think it's Type 1 or Type 2, which is why they've called it CFRD.

Anyway, I had my most recent GTT completed in the middle of November at a local hospital instead of going all the way out to Chicago to my CF clinic. I've been getting them done in the winter for the past couple years and I knew that I was due for one soon. Since my CF clinic appointment got pushed back til January, I figured I'd get my testing done before I went so that we could discuss the results at my CF appointment. The test goes like this: Fast for 8-12 hours, get my blood drawn/blood sugar checked, drink a nasty glucose drink (this time my flavor was Tropical Punch - more tolerable than the Orange), wait two hours - no eating or drinking those two hours, then get my blood drawn/blood sugar checked again.
My fasting blood sugar was 101 and I went and sat in the waiting room for two hours. Then she calls me back to take my 2 hour blood draw and when she tests it, she goes, "Woah, that's high." So I got a little concerned and asked, "What was it?" And she said, "Well, I'm not really supposed to tell you." How can you sit tehre and say out load 'woah, that's high' and expect me not to be curious?! So she looked around (I guess to make sure no one would hear her) and she said that it was 219 and it's supposed to be under 125 if I remember correctly?
So, she started asking me how I was feeling and was totally freaking me out. She told me that I couldn't leave yet because she wanted to check with a doctor to make sure I was okay to leave. I told her that I felt fine, and that I was just a little bit hungry. She looked at me and said, "Oh, you're hungry?" (Note to self: don't tell a really worried, uninformed phlebotomist that you're feeling ANYTHING, even just a little hungry.)  Anyway, she found the on-call doctor and explain my sugars to him and he said that I was fine to go. They were going to fax the results to my CF doctor and a nurse would call me tomorrow to discuss these results.

The next day a nurse called me and explained that I might be "hyperglycemic" because I have high blood sugars. She said they'll probably put me on Metformin (an oral pill), which is typically what they give patients with high blood sugar. But she wasn't completely sure because she didn't know how it would interact with all of my CF medications. I told her that I'd talk to my CF doctor about it and let her decide since she knows me and my CF much better.

A few days later my CF doctor called me and we talked about the results. She explained to me that I'm "not falling apart" and not to get worried. We kind of knew this was coming because the past couple glucose tests were borderline high. She said she wants to set me up with an appointment with an endocrinologist at the University of Chicago (where my CF clinic is) to discuss my results. She's said I'll most likely not go on the Metformin that the nurse suggested because since it's an oral medication, my body already has a hard time absorbing things, I'll most likely have to go on injections -- yikes!!! That totally freaked me out!! But she said we won't know anything for sure until I see the endocrinologist. I'm currently waiting for that appointment to be set up, which will either be the end of December or the same day in January that my CF appt is on. But my CF doctor explained that if/when I get my sugars under control, it can help with weight gain and lung function = bonus! It got me wondering if this sudden weight loss is possibly due to CFRD? Hmm...guess I'll find out in the next couple months....I hope.

2012: A Year In Review

January: Tim was tested to see if he was a CF carrier and the test came back negative, yay! Also, Kalydeco was approved by the FDA for CFers with the G551D mutation(which I have)!!!
February: Lots of snow, a doctors appointment, and my first blog award.
March: I started running outside and planning for the 2nd annual DeKalb Great Strides. I unfortunately had to reset my compliance count after forgetting some albuterol over a weekend out of town. I was at 215 days!
April: DeKalb Great Strides event went very well and raised over $20,000! There was also lots more running/training for my first 5K.
May: I applied for teaching jobs like crazy, ran some more and registered for Brett's Run (5K).
June: I completed my first 5K! FINALLY got my first teaching job!! (This was a great month!)
July: We started planning for our move due to my new job, and I started bringing items into my new classroom.
August: The big move (about three hours south), the first day(s) of school, and motivated myself to keep running by signing up for another 5K.
September: I completed my second 5K (The Shoreline Classic) about a minute faster than my first, signed up for the Glo Run and Turkey Trot.
October: Tim and I celebrated our two year wedding anniversary, and I developed my first chest cold of the season.
November: I completed the St. Louis Glo Run, our local Turkey Trot --and if you're counting, those were my 3rd and 4th 5K's of the year -- and I won a turkey at the Turkey Trot! :)
December: I won Bears vs Packers tickets and attended my first Bears game! I developed another chest infection due to my lovely, germy class/job. Oh, and we all survived "the end of the world". :-)

Overall, I'd say this was a pretty excellent year for me! I was able to accomplish/achieve many of my goals this year. I'm still working on getting my lung function up into the 90s and gaining back the weight I've lost from my added stress this fall. But these are things that I'll continue to work on in the coming year. I'm currently at 301 days of 100% compliance with my treatments - I'd say that another great accomplishment. This year was spent on trying to make myself the healthiest I could be by exercising and staying on track with my treatments. I plan on continuing my exercise this spring, while I focus on weight gain this winter. Here's to a happy, healthy, productive 2013!

Another Mark Off The Bucket List

About a week or so ago I posted about how I won tickets to the Bears vs Packers football game. Well, the game was yesterday and it was a lot of fun. Unfortunately, the Bears lost against the Packers (not a huge surprise, honestly), but it was still a fun time -- awesome energy in the crowd. Our seats were in section 251 - the north end zone. We weren't at the lowest level, or the highest levels, just perfect. I cannot believe how expensive everything was, but I'm very lucky to have won the tickets and had this experience with Tim. Here are a couple pictures from the game:

Announcing the Bears

First kick-off - tried to zoom in to get a good
shot of Hester

Half time :)

When the Bears should have scored a touch down!
Pretty sweet view from our seats, though.

:-)

CFer Dies Of Cancer

Above my blog posts is a little box that shares any type of article or story in the news about Cystic Fibrosis and today, this one caught my eye: "Cystic Fibrosis sufferer given smoker's lungs in transplant dies of cancer...".
Unfortunately, transplant patients are at a higher risk of developing cancer after a transplant (like my friend, Joe), so that wasn't really what grabbed me about this. The part that I was startled by was the "given smoker's lungs in transplant". I just don't know what to think about this. I don't think I would want a smoker's lungs if I had to get a transplant. If I'm going to get a transplant, I don't want another set of damaged, crappy lungs - I'd want the best ones possible. But at the same time, the article makes a good point in saying that about 40% of organ donors are smokers. So if smokers weren't allowed to be organ donors, that would decrease the available donated organs by ~40%, which makes things difficult when there are so many people on the transplant list.

I don't really know where I'm going with this post because I don't really know how I feel about it. The article states that patients are more likely to live longer by getting smoker's lungs than rejecting them and waiting for another non-smoker's set to come along. I guess this just surprised me - I assumed that they wouldn't give a transplant patient smoker's lungs, but I haven't looked into the topic too much. I guess there's such a great need, that they'll take any lungs that are better than the ones the patient currently has...

They don't say for sure, in the article, if this woman developed lung cancer because of the smoker's lungs or not, but I can understand why her family, and new husband, would be so upset by her too soon death after transplant. Unfortunately the woman was not aware that she was receiving smoker's lungs going into the transplant, and her husband said that if she would have known, he thinks she would have not accepted them.

This just makes me think: How picky should you be when you're desperate for new lungs? I don't know if 'picky' is the right word... Would you reject smoker's lungs in hopes that a new, healthier set would come along? But then how much longer would you be waiting? Would you be able to live long enough for a second match? Or do you accept the smoker's lungs because they're probably better than the ones you've got right now? Should/Do hospitals have to disclose information about the donor (smoker vs nonsmoker) to the recipient?
Again, I don't know a ton about the transplant process, so I'm sorry if I seem uninformed - because I really am. This just got me thinking...

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. :)

And The Winner Is...

This is the little gift I won at the
meeting on Friday. 

This has been such an interesting past couple of weeks! I won a turkey through the raffle at the Turkey Trot, Friday afternoon at a PLC meeting I won a cute little Christmas decoration and candy, and today was definitely the best: I won two tickets to the Bears vs Packers game on Sunday, December 16th! I grew up a Bears fan and I've always wanted to attend a professional football game - it's actually on my "Goals" page - I just never thought the day would come because tickets are so expensive.

Our school participates in a program called Play 60, which encourages students to be active for 60 minutes a day to fight childhood obesity. Well, I guess the program sent us two tickets to the Bears/Packers game (huge rivalry, for those who aren't from the area). So our home/school liaison approached me this morning saying that they have the tickets and they were going to raffle them off to anyone who participated in the Turkey Trot, and asked if I'd be interested. Of course I said yes, thinking I'd never win. Well about 2:30 this afternoon while we were doing a class craft, she came in my room with the secretary behind her with a camera (to get a picture of my reaction), and said, "Guess who won the tickets?!" I was so surprised!! So I texted Tim right after school to tell him about it, too. I don't know a ton of information yet, just when the game is. I'm not sure where our seats are, but I really don't care - I'm just so excited that we get to go to a Bears game together!

So, in a crazy round-about way, I have CF to thank for this opportunity. If it wasn't for me having CF, I would have never started running. I'm very proud of myself for accomplishing four 5k's over the past few months, so maybe this is my reward - crossing off another one of my big goals! Sweet! :-)