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. :)

CF Clinic

Here's a quick recap of my appointment yesterday.

I started feeling a cold, extra tingly cough coming on Monday that slowly increased throughout the week. I was worried about what that might show for my lung function because my lungs were getting tight. And now this morning I'm feeling worse than I did yesterday, and I'm really looking forward to the weekend to relax, shake extra, and maybe even get in a nap.

I got to my appointment about ten minutes early, but didn't get called back to a room until about half an hour after my appointment time. Oh well, I had time to scroll through FB and relax after the long drive. The took me back to get my weight (134.9lbs) and then to the room. The people who cleaned it were just walking out and the cleaner smell was SO strong. They asked if I wanted to wait in the waiting room for 5 more minutes while it aired out and I definitely said yes. So, five minutes later she brought me back to the room and it was much better. Someone came in to do my vitals (100% O2 level and blood pressure was fine). Then came the PFTs...

I always get a little bit nervous before doing them because it's basically the whole reason I'm there. It guides the rest of my appointment and tells how my lungs are holding up. My last visit was very disappointing when I had a huge drop and was down to 81%. I was hoping to be a few points higher than that today because I had been feeling excellent until this week, so I was worried that my tight lungs would skew the results. My first blow was pretty good, and when I looked at the screen I saw 86%! I said, "Yes!" and then coughed my brains out for a little bit. Once I got everything out, I did the test again and got an 83...not too bad, but I was getting tired and tight. I coughed a bit more until I felt clear again, then went for a third test. Same result - 83. I could tell the last two were lower because of the way I was feeling, so thankfully they took the first test as my best one. :)

So even with this cold beginning, my lung function has gone up at least 5% over the last couple months. I am very happy with that. I think the combination of being healthier, doing all of my treatments, and joining my running group has definitely contributed to that increase. I'm a little worried I'm going to lose a bit of it by the way I'm feeling this morning, but hopefully I'll fight this nasty bug off soon.

Thankfully, I'm at a very healthy weight so I have some back up pounds to help me get over this cold. As a person with CF, it's always been very hard for me to gain weight, and it's always come off very easily, which was not fun! My body is going to be working extra hard over the next few days to fight this cold, which burns more energy and calories. So I'm glad and lucky to have that extra weight, so that if I did lose a few pounds, I'm still within a healthy range. The unfortunate part of being at the heaviest weight I've ever been is my belly. Oh the dreaded CF belly.....I posted about it several years ago when I thought I was at my highest weight (about ten pounds lighter than I am today - thanks Kalydeco). It's very common in the CF community to have a belly. It's the way our bodies are built and I don't think people who are not familiar with CF understand it. Yes, I look pregnant, but it's all CF belly. That's where I gain my weight (and in my face) and I also have a distended belly because of my digestion issues. CF patients frequently have bowel/digestion issues, extra gas and bloating which all shows in that area....just an extra lovely perk of the disease. So for those of you who keep looking at me funny...please stop. :)

Overall, I had a great appointment. The doctor was very please with my increase in weight and lung function. She wants me to up my treatments to help kick this cold or whatever is developing. Hopefully it'll disappear by next weekend when I'm running in the Turkey Trot! I'll go back in January for a follow-up (she said unless the weather is bad, then we can wait til February).

36 Weeks

Wednesday, July 23 - 36w, 5d
Friday, the day I hit 36 weeks, I had a CF clinic appointment. Prior to the appointment, I expected my lung function would probably be around 70% still just because I didn't feel completely different from my appointment six weeks before. To my surprise, my PFTs were no where near 70%...

That's right, an FEV1 of 83%!!!! I'm back to my pre-pregnancy baseline!! I was ecstatic! My first round, my FEV1 was 79%, the second is shown above, and the third one was around 80 or 81. I am so happy! It's a relief knowing that I'll be heading into labor & delivery with my pre-pregnancy lung function! I have to attribute this major increase to you dropping (didn't happen overnight and have a huge 'relief' feeling, but I can tell you're sitting lower) and me starting Cayston about a week before I did this test.
My doctor was pleased with the results, of course. We also discussed my lack of weight gain and thankfully, she's not as concerned as I thought she'd be. She said it's just going to have to be a threshold thing, see if I can tolerate the frequent bathroom trips and extra gas/bloating for another three-ish weeks. I told her I've gone this long, I can make it until you're born. Plus, there's not much else I can do...I've already increased my enzymes to the max amount and I'm taking two probiotics a day. They suggested adding Ensures back into my diet to try to add in extra calories, so we'll see if that helps at all.

After my appointment, I stayed with Auntie Catie for the weekend while Daddy was at Uncle Tony's

bachelor party. Catie and I caught up, pampered ourselves (she got a manicure, I got a pedicure) and visited with her family - my second family before moving away for college. It was a nice, relaxing weekend. Monday I spent a couple hours working in my classroom, and went back again on Tuesday for several more hours to meet with my sub to finalize things for the beginning of the year. My plan is to have everything completely ready to go for her (and my sanity) by the end of the day tomorrow. This way I can enjoy the wedding weekend and be prepared to have you any time after & not be stressed about what still needs to be done at work.

Pregnancy-wise, I really can't complain. You're still moving a lot every day (not at night when I'm sleeping, thank you!) but your movements are different now. You like to shake your booty from side to side on the top of my uterus, right near my belly button. Sometimes, I'm guessing when you're stretching, you stick it out really far and my belly gets super hard in one spot & we can feel your butt! You also like to stick your little hands/elbows/knees/feet out on my left side. We're never exactly sure what we're feeling, but it's usually a little, hard, round thing poking out from time to time and it's so cute. My Braxton Hicks have noticeably picked up this week, so I'll make sure to let the doctor know tomorrow...hopefully that means my cervix is starting to ripen, even just a little. And thankfully, I've still been able to sleep great each night. Some women have trouble sleeping this far into pregnancy because they're uncomfortable and/or because their babies will move around a lot overnight. You don't move from the time I fall asleep to a little after I start waking up in the morning - let's hope that means you'll be a good sleeper! Occasionally I'll feel you shift when I'm in the process of rolling over for the 100th time, or when I lay down after getting up for the third time to pee, but you seem to fall right back asleep like mommy does. :)

Oh, and how could I forget, your cousin, Alayna, was born today!!! She's so cute, looks a little like Isaac and has lots of hair! I can't wait for you two to meet and to watch you grow up with all of your cousins!


Thursday, July 24 - 36w, 6d
I had another OB appointment today. They did the ultrasound first where you did everything you

Here's the back of your head & that white blob on the back, top
left side is your hair flowing in the fluid.  

needed to do so that I didn't have to get a non-stress test. Your heart rate was 153bpm, you moved quite a bit, practiced your breathing a little bit and were way head-down. After the ultrasound, I met with the doctor (weight: 129). She's extremely happy about my last CF appointment and there really wasn't much to talk about because everything's been going so smoothly. I asked her when they typically start checking my cervix, and she answered that usually they don't on most women because in their clinic many women don't make it to term. But she said she'd be happy to do it if I was curious, but she wouldn't change how she was going to treat the pregnancy and didn't think I'd be dilated yet. Of course I was curious, so I asked if she would check me anyway. My cervix is about one centimeter dilated and is about halfway thinned out, which the doctor was happy about because it showed that my body is slowly getting ready (I have been absolutely amazed at what my 'sick' body has been able to do this pregnancy!). She said she could also feel that your head was way down low which was a good sign because it indicated that you'll most likely fit through my birth canal, yay!

35 Weeks

Friday, July 11 - 35 weeks
Today, Rhonda and I met at school to set up my classroom furniture. We made a lot of progress, but I'll have to go back at least once more before the school year starts. I also met with my sub to start figuring out everything for the beginning of the year. Thankfully she told me that my maternity leave time is my time to relax with you, and that she wants to do as much as she can on her own while she's in my room...yay! I'm glad she's willing to jump right in this year.


Monday, July 14 - 35w, 3d
Developmentally, this week you're about 'ready'. Your kidneys are fully developed and your liver can now start to process waste. Your hearing is fully developed (although you'll respond best to high pitch sounds right now), your circulatory and musculoskeletal systems are complete and your lungs are still maturing a bit - the longer you stay in there, the better it is for your lungs. Since most of your developing is complete, you're main job is to keep gaining weight so that you're able to regulate your body temperature here in the outside world.

Today one of my coworkers bought a book shelf that Daddy made, so that freed up some space in the living room. As soon as her and her husband left, I pulled your pack n play into the living room, added the changing pad attachment and stocked it with a few diapers and wipes. Now your room is a bit less cluttered. :) I'm trying to wait on packing my hospital bag until after my appointment on Thursday, just to see what they say. Being a day shy of 36 weeks then, I'm curious if they're going to check my cervix yet. I'll most likely pack the bag Thursday after the appointment because we're going to be out of town the next two weekends, so I'm going to try to convince Daddy that I'm not crazy for wanting to bring our bag and your car seat....just in case. It wouldn't do us any good to just have your base in the car.


Thursday, July 17 - 35w, 6 d
Just got home from my appointment today and it went well. They did not check my cervix and said they don't think I'll be going into labor any time soon because I haven't shown any signs and haven't had any contractions. I'll be bringing all of your stuff with this weekend, anyway, but I'm thinking we probably won't need it.
They did the Group B strep test which was just a quick swab down below. If I test positive (which one in four women do), then they'll give me antibiotics through my IV during labor & delivery so that you don't catch it. If they didn't treat me for it, you could catch it and end up with meningitis or pneumonia which could be very dangerous on your new little body.
You did great for your ultrasound today, the tech said you were being "very cooperative". We saw you do lots of movements, you practiced your breathing and I still have a good amount of fluid, so I didn't have to do a non-stress test. Your heart rate was 171bpm and my weight was 127.8lbs. I asked the doctor if they were concerned at all because I haven't gained any weight pretty much my entire third trimester and he said, "I don't care. As long as the baby is growing, that's all that matters." I was very glad to hear that. Now we'll see what Dr. Dowell says about it tomorrow from the CF side of things...
I'll be seeing her tomorrow, I'm assuming for the last time before I have you and I'm curious to see what my PFTs look like. Coming off of Tobi I didn't feel so hot, but now that I've been on Cayston for a week, they're feeling a little better. Even with you being head way down now, I never really felt that "dropping relief" the some pregnant women get, but that's okay because I know you'll be out soon and then my lungs will have much more room to expand again.

Clinic Appointment

Today's appointment was...okay. The doctor and nurse both commented on how 'cute' I look and that I'm all belly. I've gained a pound since my OB appointment last week, so I now weigh 131lbs! This means I've gained 17lbs so far this pregnancy which I'm pretty proud of. :) I explained to my doctor and nurse about my gas, bloating and extra bathroom trips and they suggested increasing my enzyme intake for a while, with all meals & snacks, to see if that helps.

As I mentioned in my post yesterday, I've been off of Cayston for a week now and have noticed an increase in my mucus production since stopping. When they listened to me today, they said I sounded great and I told them that I'm still feeling really well lung-wise, aside from my increased cough over the past few days. Before I did my PFTs (which took forever because the system quit working about an hour before I got there), we decided to start me back up on Tobi since my mucus and cough are increasing, so I'll be starting that probably next week.

Finally, they found one of the other CF doctors who was able to use the study PFT machine/cart, so he came in and did them with me. Apparently the system is a bit different and he had to click on things at a very specific time for it to register...so I ended up doing the test six times and only two of them registered. It was a great work out for my lungs and I was able to give my doctor a nice sputum sample afterward. My average FEV1 today was 70% and my FVC was 71%, which I was initially very bummed about! I was expecting them to be in the upper 70s with the way I've been feeling - not unchanged! My doctor assured me that she was very pleased with those results because I've been able to maintain my lung function during this portion of pregnancy. So overall I've gone down about 10% from my baseline during my entire pregnancy, and it was all lost in the first 16 weeks (well probably during weeks 14-16) when I was off Kalydeco and all antibiotics. The fact that I haven't lost any since then is apparently wonderful. Of course I always want to do better, but with this little lady slowly taking up more room, I guess I can settle for maintaining for now. I hope that the Tobi helps out and that I don't lose anymore of my ling function this pregnancy. I'll be going back to the CF doctor in just over a month (probably right as I wrap up my Tobi cycle) to make sure everything's still going well. :-)

28 Weeks

Friday, May 23 - 28 weeks
Hello seventh month and third trimester!! I can't believe that you'll be making your appearance in just 12 more weeks....or less! This trimester you've got some serious growing to do. Right now you're supposed to be around 2lbs, which means you'll be gaining at least another 4-5 in the next twelve weeks. Hopefully you're not an almost 10-pounder like your Daddy was... You're pretty much fully developed, but you'll be spending these last couple months bulking up for the outside world.

Archie loves to be in the nursery & in all of the pictures!

Last night you were doing some crazy moves! You would shift something hard (I'm guessing your head and/or back) to the front right side of my belly, then you'd kick your legs or swing your arms in my back left side. It felt so weird because the front of my belly was hard and lopsided, and you must have been kicking/hitting some organ because it was quite uncomfortable back there. This is the first time you've ever been a little painful, but I couldn't help but laugh because it looked and felt so strange...plus it didn't last very long. I can tell I'm going to have some pretty entertaining days this summer watching you flip around!


Thursday, May 29 - 28w, 6d
Yay, school's out! I'm so glad I don't have to take anymore days off work for doctor's appointments...and perfect timing, too, because soon I'll be going weekly because I'm high-risk. Today's appointment went very well. I now weigh 130lbs which means I've gained 16lbs this pregnancy! :) The doctor was very pleased with that, and so am I because I thought it would be a big struggle to gain weight this whole pregnancy and I'm very happy that hasn't been an issue.

More snuggles from Archie :) Usually when he does this in the
evening, you move like crazy while he's up there
and Archie does not seem to care at all! Haha

You're doing very well, my uterus is measuring on track and your heart rate was around 150bpm. She guessed that you were head down because of where she found your heartbeat. And I'm guessing you're head down a lot of the time because I've been having some round ligament pain over the last few days, very low in my pelvis, and I'm assuming it has to be because of the way you're positioned. I'm glad you know which way to be, but you're not coming out for several more weeks, so don't get too excited yet!!
As I mentioned before, starting at 30 weeks, I'll be going to the doctor weekly for the rest of my pregnancy. At each appointment I'll be seeing the doctor, having an ultrasound, and having a NST (non-stress test). As I understand it, the NST will require me to sit in a recliner (woo hoo!) for 20-30 minutes while hooked up to two monitors - one for your heartbeat and one to track your movements. They want to make sure that your heart rate slightly increases with movements and that it's not decreasing which would show that you're in distress. Again, perfect timing to the end of the school year. These next 11 weeks, I plan on taking it easy during the week as much as possible because we have very fun & busy weekends planned pretty much the entire summer until August.

One more little positive this week - no leg or foot cramps! Of course I'm probably jinxing myself by writing this, but it's been very nice without them. :)

Pros & Cons of Pregnancy - 1st & 2nd Trimesters

So many people ask me how I'm doing/feeling on a daily basis, and throughout this whole pregnancy I've been so fortunate to answer "great" every time! As this pregnancy progresses, I wanted to make a list of the things I love about being pregnant, and the not-so-fun things about it, too.

Pros:

• My health has been amazing during this pregnancy (aside from in February when I got sick). When I have been sick, I've been lucky enough to have several treatment options (Tobi, Kalydeco, Cayston) at hand that helped me get back to feeling good again.
• Putting on weight hasn't been as much of a struggle as I thought it would be. This could be the Kalydeco helping out, or just my body responding well to pregnancy -- either way, I'm very happy this hasn't been an issue.
• I love my belly! I'm not one to take pictures of it without my shirt over it, and you'll definitely never see me in a bathing suit this summer, but every time I walk past a mirror, I love what I see. I don't feel pregnant, so I often forget what I look like to others. This belly is a constant reminder of the struggles that we overcame to get to this point and how lucky we are to be going through this experience.
• One perk of being high-risk is monthly ultrasounds! I love that I'm able to see Baby Girl's monthly development instead of just reading about it. It's absolutely amazing to see how much she changes in just a short amount of time.  
• Baby movements! This one might be the best! I felt the first movements right at 20 weeks and have been obsessed ever since! The first little nudges were great, but the bigger and stronger she gets, the more fascinated I am with feeling every little poke, body role and whole-body stretches and flips. Watching her make my belly bounce is hilarious and I often sit in bed on the weekends after I wake up just staring (and poking) waiting for her to dance around. Although, Tim says I have to stop poking her so she doesn't have brain damage... :)
• Bigger boobs -- who can complain about that?! Aside from having to purchase new bras, I can't complain about a little extra cleavage. I'm sure this one's a pro for Tim, too.
• How could I forget....no morning sickness!! I was very excited about this one! First of all, I hate throwing up, so the thought of doing it for weeks on end killed me. Plus I was so worried about managing my weight, especially in the beginning of the pregnancy, that I was very thankful not to have to deal with any nausea or vomiting.
• I've never really felt tired. I think that the typical fatigue that comes with the first trimester was mostly over winter break when I was just bumming around the house anyway. Now that I'm closing in on the third trimester, I do notice it takes a bit more effort to bend and move certain ways, but I still feel like I have the same energy level.

Cons:

• CFRD & sugars: This one isn't really much to complain about, just a small inconvenience. The first half of my pregnancy, I had to check my blood sugar four times a day (fasting and then two hours after each meal). Since I was able to keep them pretty stable, the doctors let me cut down to twice a day around 24 weeks. This is definitely saving my little fingers from being pricked so much, but watching what I eat is constantly on my mind so I don't spike my blood sugar.
• Lack of carbs: I never realized how much I love carb-loaded food until I got pregnant and very strictly had to watch/control my blood sugars. I cannot wait to go on a carb-binge after she's born! I miss giant bowls of cereal and especially whole boxes of mac & cheese! 
• Leg & foot cramps: These are no fun! In the beginning they were sporadic and usually due to dehydration, but as I get into my third trimester, they're happening several times a week (always in the middle of the night). They're more frequent because my legs are carrying extra weight and my expanding uterus is putting pressure on my veins that return blood from my legs to my heart. My uterus is also putting pressure on the nerves leading from my trunk to my legs. (according to Baby Center)  
• Constantly having to drink water and go pee -- This is true of pretty much all pregnant women. We have to stay hydrated to avoid things like swelling and cramping, but the trade-off is frequent bathroom trips. I've had to start taking my class for an extra bathroom break each afternoon just so that I can go, lol. But thankfully I've only had very minimal swelling and it's only been on very hot days. Can't complain about that!
• Gas and bloating - This symptom came out of no where around week 25 and has been very annoying. I feel like I used to feel before I started taking probiotics - very uncomfortable, bloated and gassy, with extra bathroom trips during the day. At first, I thought maybe I should increase my probiotics, but after talking with my doctor and other CF women, it sounds like my insides are just shifted around and taking an extra enzyme with larger meals has helped a little bit. I'm really hoping this doesn't affect my weight gain.

First Post-Kalydeco Clinic

Today I had my regular CF clinic appointment, and tomorrow marks the 8th week I've been on Kalydeco. Of course I've been looking forward to this appointment pretty much since I started on Kalydeco just because I wanted to see (in numbers) the change that was happening with my weight and lung function. 

Overall, I haven't noticed a huge transformation in my lungs, but I have noticed that I'm starting to get my CF belly back a little bit, as well as some "love handles" - but then again I thought I was noticing these things the before my last appointment, in July, and I ended up losing a half pound, so I wasn't getting my hopes up today. Over the last eight weeks, I've coughed up a ton of mucus. There are days where I feel it's endless, but then there are days where I barely notice that I'm coughing at all. One thing that I have noticed though, is that when I am coughing this stuff out, it's from deep down in my lungs. I've coughed up some funky colored stuff over the past couple months, which I'm guessing was just old, deep mucus. 

As far as my weight and eating habits, I've started drinking two Ensure Plus's per day - one with breakfast (and my first K of the day) and one with lunch at work to replace those calories I'm burning while working. If I have both per day, that's an extra 700 calories and 24 grams of fat added to my already high-calorie and peanut butter-filled diet. Speaking of peanut butter, I've been on this crazy PB & J kick lately and I eat at least one or two pb&j sandwiches (or on toast) per day. 

So anyway, back to my appointment. Due to the changes I mentioned above, I was hoping that my weight would be at least 111 lbs (3 more pounds than what I weighed in July), and my FEV1 somewhere in the 80s. I knew that I shouldn't set my expectations too high 1)because I've only been on K for two months and 2) because I don't want to be disappointed in my body if I don't get those numbers because I've been feeling great and doing everything I'm supposed to do.

Of course I got to clinic early, and it was packed. At one point, there were at least 4 other CF patients in the waiting room -which is totally against proper infection control...but that's for another blog- (they weren't 'labeled', I just think that I have pretty good CF radar), and I was the only one wearing a mask! Either way, it was packed. So I kept myself occupied with my phone and my book for the hour or so that I waited to be called back to my own room. The first thing they do (usually) at my clinic is weight, vitals, PFTs, then I usually sit forever until a doctor or nurse comes in. Today, she weighed me first and I was a whopping 114.8!!! I totally said, "YES!" when I saw that on the scale, haha! That's up SIX pounds since July and I'm very comfortable with that. I think this is a good, healthy weight for me, but I'm not going to stop what I'm doing with the Ensures & pb&j's. A little extra weight wouldn't be a bad thing for me.

After being weighed, I went into my room and had my O2, blood pressure and temperature checked. My O2 was 97%, blood pressure was a little elevated and my temp was 99.3. She asked me if I was nervous, and I said no, I was just anxious to get my PFTs done and that I was a little hot (I was sweating!). Then I sat in the room, for probably 10-15 minutes before my new nurse came in. She introduced herslef and we chatted for a little bit. Then she asked me about my lung function, she sounded just as anxious about my results as I was, and I told her that I was still waiting to get my PFTs done. She was like, Oh man, let's get going on that! How exciting! Oh, but no pressure! Haha!

Finally the RT (the good one, Patti!) came in with the PFT machine. I pulled my hair back and stood up anxiously while she got the machine ready. She, too, was so excited for me to do my test because she wanted to see what my numbers looked like after being on Kalydeco. I did the first test, with her wonderful encouragement, and blew an FEV1 of 82% (5% higher than July!). Honestly, I was a little disappointed with that number, but I thought to myself at least it went up & it's in the 80s. So I did two more tests - the second test was 82 again, and the last was 80. So, my overall lung function as increased by 5% since July. Who can complain about that?? The best part - my small airway function...this is something that my doctor looked at a couple years ago and decided to put me on Advair to try to increase. And after being on Advair, my small airway function went up to 96% in August 2011. The over the next couple years, it followed this trend = 85, 88, 86, 78, and finally 72 in July. Today, my small airway function was 90%! That's an 18% increase!!! And I can feel that! When I take deep breaths, I'm not as wheezing and crackly as I've been in the past! :-)

My doctor is really looking forward to see what my cultures look like to see if the K is affecting that. She also mentioned that she's looking forward to seeing what happens at my next appointment and that maybe we can talk about backing off of anything....that would be fantastic, but we'll see - not getting my hopes up on that one. And finally, in another month, I'll get my liver enzymes checked to make sure that's reacting appropriately with the Kalydeco, too. Needless to say, everyone was very pleased with my results, including myself! For only being on Kalydeco for two months and to notice these changes already, really makes me happy! I'm going to keep doing what I'm doing, plus I'm going to try to increase my exercise (I've been completely slacking) since that made a great impact on my lung function...it can only go up from here, right?! :-)

Probiotics!

**Warning: This post may have "TMI" for some readers - including talk about gas and poop.**

*Also, I am not giving medical advice, just telling you what has worked for me. Please consult your doctor before trying anything new!*

I started taking a daily probiotic (Target generic brand) shortly after my last clinic visit. I had talked with the nutritionist about what and how much I've been eating lately, and I how I was very discouraged because I wasn't gaining any weight. My whole life I've struggled with digestive issues, I think sometimes even more so than lung issues. I've always gone #2 at least twice a day growing up and I've always been very bloated and gassy. It's been extremely uncomfortable and embarrassing, but I just thought, "this is CF". And if you know me personally, or any other CFer (or you've read about it online), CF poop is not pleasant (loose & stinky)...especially when you're going more than once a day.
Here's a list of symptoms according to the CFF website:

People with CF can have a variety of symptoms, including:

• very salty-tasting skin;
• persistent coughing, at times with phlegm;
• frequent lung infections;
• wheezing or shortness of breath;
• poor growth/weight gain in spite of a good appetite; and
• frequent greasy, bulky stools or difficulty in bowel movements.

So, since that was on the list of symptoms, I assumed that all CFers had this problem, and that it was just going to have to be my 'normal'. Days when I went #2 once a day was like heaven!

Anyway, in April when I was talking to the dietitian we were trying to think of what I could do to help my tummy troubles and help keep weight on (because most of what I was eating was just coming out). She asked if I was trying to snack frequently and eat smaller meals - yes, I was already trying that. She asked if I was on an anti-acid (ie: Prevacid, etc) - yes, I'd been on one for quite some time. She asked if I was taking a daily probiotic -- No....that was something new to me! She was excited that there was finally something different for me to try. Probiotics help resort the healthy bacteria back into your gut, that could be killed by antibiotics, to help with digestion. She told me to try taking one a day to see if that helps. Oh man does it help!!!! This may sound ridiculous, but I asked Tim the other night, "When's the last time I farted?" Of course we started laughing, but honestly, it's made that much of a difference for me. It was sometimes daily that I could complain about feeling bloated/gassy/uncomfortable. I haven't felt that way in almost two months since I've started taking this! I now only go #2 once a day and it's formed and wonderful. I know it sounds crazy for me to be talking like this (especially if you don't have CF), but if you have CF and/or live with someone who does, you'll totally understand! I'm not sure if I've gained any weight yet (we don't have a scale in the house), but it's wonderful to be feeling better. I'm hoping this summer the combination of eating frequently and going to the bathroom less will help me gain the pounds I need! :-)

I think I should be a spokes-person for Probiotics!!

Summer Schedule?

Woo hoo! No school! Summer break! I can do whatever I want for the next 2 1/2 months! True...but honestly I'm struggling without a routine/schedule. It's so easy for me to lay around all day watching TV without keeping track of time and how much I may or may not have eaten throughout the day. Currently, I'm really trying to gain weight and keep my lungs as healthy as possible, so to keep that up this summer, I've decided to make myself a daily schedule. It's nothing set in stone, there are no times attached to each thing, but there are certain things I need to accomplish each day - this is what I've come up with so far.

• TREATMENTS
• EAT (breakfast)
• 30 MINUTES EXERCISE
• Shower
• EAT (snack)
• Run any errands for the day
• TREATMENTS
• Housework 
• EAT (lunch)
• TV/read/etc
• EAT (snack)
• Hang out with Tim
• EAT (dinner)
• TREATMENTS
• EAT (dessert)

*I'm going to try to fit an extra treatment in the middle of the day - why not, especially if I'm sitting at home all day. 

*I'm going to try to get at least 30 minutes of exercise in everyday - whether its just walking around the neighborhood, going for a run, doing a workout video, something...anything!

*I'm really trying to eat/snack all day long. Sounds glamorous, it's not. I stocked up on protein bars on Monday to help me with snacks throughout the day.

*Now if I have plans for the day, then I'll just make sure that I get in my two required treatments a day and eat as much as possible. This schedule is for my lazy, nothing to do, days...which will probably be a lot of days this summer! :-)

*I tried this yesterday for the first time and did pretty well. I got in three treatments, 35 minutes of walking & running and ate several snacks on top of breakfast, lunch and dinner. It also gave me something to look forward to when I got out of bed. I knew that I had to do my treatments, but I was also mentally prepared to get outside and walk/run around the neighborhood. I like having a plan/schedule/routine. I don't do well with the 'unknown' as much. I think this is really going to help me make the most of this summer! :)

CF Awareness Month Blog #28 - What NOT To Say

• "Have another cigarette!" or anything else linking our cough to smoking....trust me, I know we'd all give anything to not have the smokers cough.
• "Must be nice to have to gain weight." (see comment below)
• "Must be nice to be able to eat whatever you want." I've blogged about this before, but it's not about eating whatever you want. Yes I need to consume a large amount of calories, but if I put crap into my body, then I'm going to feel like crap, and I am going to crap! haha
• "You're so skinny!" or "I wish I was as skinny as you." These bother me only because people don't realize my life-long struggle to not be so darn skinny and malnurished. 
• "The Vest looks fun." Try being hooked up to it for at least an hour a day, and while you're shaking, you're coughing your brains out....SO fun!
• Anything that has to do with our bathroom habits!!! WE CAN'T HELP IT!

That's about all that I can think of. I hope some fellow CFers will add a few! And it's one thing to say these to me without knowledge of my CF, but it's most annoying when it comes out of the mouths of people who know what I'm going through and just don't think before they make a comment.

Positive Thoughts Thursday

First of all, I want to apologize for neglecting to post any positive thoughts over the last month. Tim and I have been through some stressful, crappy stuff over the past few weeks - which is when I should have probably been trying to really focus more on the positives - and I've been feeling pretty crabby lately. Thankfully, I feel like I'm coming around out of that slump a little at a time, and I felt it was necessary to get back into my positive thinking ways...

• A few weeks ago I started taking a probiotic and man, do I feel great! I am less bloated and gassy in general and my bathroom trips have been less frequent. I'm also still trying to monitor my calorie intake and blood sugars to try and stay as regular as possible. I'm hoping the combination of all of these things will help me start gaining the weight back I need.
• Although I have learned quickly that the end of the year is almost (if not more) stressful than the beginning of the year as a teacher, my class and I have had a lot of fun days in the past couple weeks. We went bowling (supposed to go to the zoo, but it was rainy and cold); we went to the YMCA where the kids were able to swim and play in the gym; and just yesterday we had Play Day where we travel from station to station outside all afternoon. There was a bounce house, inflatable slide, inflatable obstacle course, a water station, snow cones, tug of war, dodgeball, and sack/relay races. I am so happy that I'm healthy enough to run around with my kids and be able to participate in all of this fun stuff with them! :-)
• Tim and I are house hunting! Since I have found a job that I love and Tim's now in a stable job, and we're closer to Tim's family, we're looking to buy a house! This is a huge goal of mine (to be a homeowner) and is one of the things that I wasn't sharing about a month ago when I mentioned I was working towards one of my goals. We are currently under contract on a house and are waiting to close (this has been the stress of my life for the past few weeks because it is NOT going according to plan, but I'm keeping this post positive!). I'm hoping soon that I'll be able to post that we're officially homeowners. 
• Last Saturday was my second Great Strides of the season and it was so much fun. We had family on both sides show up to walk on the chilly, windy but sunny day. After the walk, Tim's sister Katrina,
  Tim and I played on the playground with our nephew, Isaac for a while -it was so fun!! I can't believe how big he's getting! See the adorable pictures below. :)
• Kitten update: The kittens are 4 weeks old today! We were able to see them while we were in town for Great Strides last weekend. They are hilarious. Their eyes are open and they're learning to walk, but they stumble all over the place. They are also learning how to play together which is hysterical! I think we sat there for about 2 hours just watching them. 
• Oh, how could I forget?? I'm an aunt to a third nephew!! Tim's other sister, Elise, had her second son, Liam, on Monday, May 6th! He's soooo cute and I cannot wait to go see him in June to celebrate his big brother's third birthday! :-)
• I've started running again and boy did I miss it! A couple days ago I ran 2.4 of my 3.5 mile route! :) Tim and I signed up for a 5K in June (the same one I did for my first 5K last year) so I'm prepping for that. I'm so happy that my body hasn't lost a lot of the endurance I had in the fall since I took the winter off. 

3 1/2 week old kittens

This is our little guy - still haven't agreed on a name yet for him

My favorite picture from Great Strides! Aunt Colleen & Isaac! :)

Running around the park with Isaac

Tim and I just hanging out on the dinosaur!

Weeeee!

He loved peeking through that thing

Haha...that slide was painful on our hips...I think we were a little too big!

CF Awareness Month Blog #5 - Diet

As soon as I saw this topic, I shook my head and rolled my eyes...this has been a problem my entire life! Every doctor appointment growing up I just remember them saying. "We'd really like you to gain more weight." Easier said than done! I've posted lots of blogs on the topic of gaining weight, and it's really not fun. The way I see it, is that it's just as hard for me to put on weight as it is for a 'typical' person who wants to lose weight. Currently I'm trying to eat 3,000 calories a day, which may sound very easy. I used to think, "This part of CF is awesome, I can eat whatever I want." But I've really been trying to consume  much healthier 3,000 calories rather than crap...because I feel like crap (and I have to crap) when I'm putting junk into my body.

Basically, with CF, my body does not produce natural enzymes to break down food and absorb nutrients from my food. So if I don't take manufactured enzymes (Creon, Zenpep, etc) then everything goes right through me and it causes lots of bloating and stomach pains = not fun!! So before I eat anything, I have to take my synthetic enzymes to assist my body in breaking the food down and absorbing the nutrients. Even with taking these enzymes, my whole life I've still struggle with gaining and maintaining a 'healthy' weight, based on my BMI:

Generally speaking, your BMI tells you your current weight status. Here are the rankings and what they mean:

• Below 18.5 = Underweight
• 18.5 - 24.9 = Normal
• 25 - 29.9 = Overweight
• 30 and above = Obese (http://www.fitday.com/fitness-articles/nutrition/for-women/whats-a-normal-body-mass-index-for-a-female.html#b)

Right now I am 5'3.5'' tall and weigh 109lbs and using this BMI calculator, my BMI is 19 which is on the very low end of normal. My dietitian and CF doctor would like me to be at least 20-22 (which is 115-125 lbs). My goal is to juggle a full-time, physically demanding job, exercising several times a week, eating 3,000 calories per day and gain weight. To me all of those things don't go together, so I'm hoping that this summer when I'm not working, I'll be less stressed and burning less calories throughout the day which will help me gain weight...we'll see.

Just to give you an idea of what a typical daily diet consists of to achieve 3,000 calories:
Breakfast: 955 calories 
Scrambled Egg (78)
Two sausage patties (380)
Two slices of whole wheat bread w/ peanut butter (375)
8oz of 2% milk (122)

Lunch: 869 calories
Grilled pork chop - dinner leftovers (440)
Barbecue sauce (139)
Potato chips (150)
Yogurt (140)

Snack: 150 calories
One bag of popcorn (150)

Dinner: 1,059 calories
Bigger pork chop (587)
Barbecue sauce (139)
Corn (150)
12 oz of 2% milk (183)

Snack: 296 calories
Apple (126)
Caramel (170)

Total: 3,329 calories for one day - and this is on a good day. It's really hard to not feel like I'm eating all day long on days like this! Plus I'm burning a lot of calories at work because I'm on my feet all day long. Then subtract any calories burned from exercising that night, so this easily drops below 3,000 on those days.

I actually have an app on my phone and about once a week I'll track my calories for the day just to make sure that I'm getting enough. You can imagine how much food we go through in our house with me having to snack all the time!! It gets expensive eating like this! Can you see now why I shake my head and roll my eyes when this topic is brought up, it drives me nuts!! I feel like I am getting better about snacking on higher calorie things more often, it's just frustrating when I'm doing all of this and it's still not working, as in I'm still not gaining weight.

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!

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. :)

Random Thoughts

• I haven't blogged in about a week - I feel like I'm due for a post, but there's not too much going on right now. 
• Tim just left with his dad for Tennessee to help his sister and her husband add a bedroom to their house to sell it. They're moving back to this area as soon as they're able to sell their house! Sweet! Tim will probably be gone all week. Bummer.
• We had a nice Thanksgiving with Tim's family and my family. Tim smoked the turkey I won at the Turkey Trot and it was delicious!
• We had the rest of the long weekend at home, which we used to put up our Christmas decorations and begin our Christmas shopping.
• Call me crazy, but I'm already getting excited for Great Strides in 2013. I was looking up sites/dates last night and realized there is one at the same park where I just did my Turkey Trot -- that's about 5 minutes from our house! I'm super excited that there's a local one here that Tim and I (and whoever else wants to join us!) can participate in next year!
• I'm going to try to count my calories again this week. Since Tim's gone, I won't be eating out at all, so it'll be easier to track with everything in the house.
• My goal is to be around 117-120 pounds at my next CF clinic appointment in January - which means I need to gain at least 5 pounds in the next 2 months....easier said than done.
• I'm debating on buying a scale to help monitor my weight. I don't know if that'll make me too obsessed, or if it'll help me. 
• I need to focus on snacking between meals and/or eating smaller meals more frequently throughout the day...easier said than done.
• That's about all I can think of...time to go eat. :-)

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! :)

What's Another 6 Miles?

Well, I officially signed up for the Turkey Trot on November 17th! The race is at 9am, so I'm hoping the sun will be shining and it'll be above freezing that morning! :-) I also was able to get one of my fellow kindergarten teachers to sign up for it yesterday - this will be her first 5K! I'm excited that I'll have someone to run (slowly jog) with this time. I actually signed up for it last week, but still haven't gotten myself to go running since the Shoreline Classic two weeks ago.

Then this morning my sister-in-law asked me to do the "Glo Run" with her and her husband (and maybe Tim's cousin) on November 3rd. It looks like so much fun!!! It's an evening run, beginning at 7pm, where the runners get to wear glow sticks, neon shirts, and there will be black lights, strobe lights and a DJ throughout the course!! You do get a number bib, but the run itself is not timed - it's more about the fun and less about the run. :-) I'm SUPER excited to do something like this with family, and it'll be excellent practice for my Turkey Trot two weeks later.

Looks like I'll really need to keep up with my running so that I'm in tip-top shape for these two 5Ks in November. After I signed up for the Glo Run this morning, I was definitely motivated to get back outside again. It was perfect running weather - beautiful, sunny, low 60s with a slight breeze = perfect! I had been telling myself to go to Walgreens to get my flu shot this week and I've just forgotten, so this morning I decided to run to Walgreens and get it! Then after I got my flu shot, the pharmacist told me to walk around the store for a couple minutes to make sure I felt fine before I left, and I made the comment, "Oh, so I shouldn't run home, then?" She looked really confused and I told her that I ran here and that I was planning on running back....she didn't really seem to care, haha! So after I walked around for a few minutes, I decided to start walking back, but after a couple minutes of walking I just gave in and jogged all the way home (0.8 of a mile each way).

I've been feeling fine since I've gotten my flu shot. A couple other CFers I know have experienced some nasty side effects from their flu shots this year, so I'm really hoping that doesn't happen to me. I've never had a reaction to the shot before and I've gotten one every year for as long as I can remember. The only problem I get is a sore arm for a couple days....so hopefully it'll stay that way this year, too.
People have asked me why I get a flu shot if it doesn't protect from every strain of the flu. My answer to that is because some protection is better than none at all. When I catch a cold, or worse the flu, it impacts my body more than a person without CF, especially if it makes it's way into my chest. It could really take a toll on my lung function and my weight because my body would be working extra hard to fight it. I'm also more susceptible to germs this year since I'm working with wonderful, germy, gross little 5 & 6 year olds! So, I suck up a little arm pain for a few days if it means trying to stay even healthier this winter.

Speaking of things taking a toll on my weight - I've definitely noticed that I've lost some weight since I began teaching. Of course I don't mind the way I look because I've lost a lot of my CF belly, but I know that it's important for me to gain a couple extra pounds in case I do get sick this winter. I've also heard that the more healthy your weight is, the better your lung function is....someone please explain that one to me...?
Anyway, I've been struggling with the amount of calories that I'm taking in vs. the amount that I'm burning at work. I eat breakfast, lunch and dinner everyday, but it's just not enough. Plus I think the extra running is also burning calories that I'm not getting back. I'm really trying to get better about eating healthier because it makes me feel much better (less bloating & bathroom issues), but then I feel like it's harder to get the extra calories I need. If anyone has suggestions of healthy ways to add calories to my diet, I'd really appreciate it. I can't snack too much at work because I'm with my kids most of the day - but I can sneak in a quick snack during plan time if I have it that day. I don't drink whole milk, I drink 2% because it makes me feel better. I'm not a huge peanut butter fan, unless it has chocolate on it. I'm not a huge snacker, I'd prefer to have meals, but I know that has to change. And I'd say I'm a fairly picky eater when it comes to vegetables...but I'm trying to eat healthier -- more home cooked meals and less frozen, fatty crap. Suggestions welcomed in the comments section. Thank you :-)

Eat More & Keep Running

That's what I've taken away from my doctors appointment today. I've been feeling fantastic lately: lots of energy, been coughing up way more mucus than I thought I could possibly have in my lungs (sorry, TMI) from all of my running, less bloating/stomach issues...all around very good! So I was anxious for my doctors appointment today to see if my PFTs would reflect the way I feel....of course they don't! They weren't bad, but they weren't 90 like I wanted.

My current FEV1 is 85% which is only slightly up from last time so it's considered 'unchanged' which is a good thing. As long as it's not going down, then we're good to go. My doctor and the guy who did the PFTs with me both told me that it's good that I'm not going down and I know they're right, it's just frustrating that I've been working so hard at running that I was expecting a bigger result. I was able to give a big sputum sample (sorry again for TMI) today which typically isn't me but I explained to her how I'm getting so much more up from all of my exercise and she was very happy about that. She said that being in the mid-80s could just be my baseline and that anything from 80-120 (someone please explain to me how you can have over 100% lung function) is considered normal so she's very please with where I'm at. I'm not mad about where I'm at because I feel excellent and that's what matters! 


My weight has gone down to 115lbs but we contributed that to the added exercise and burning calories, so I need to continue stuffing my face - even more than I do - so that I can add a few more pounds back on. It seems like, from looking back at my health stats, that 122lbs would be a good goal for me so that's what I'll shoot for. Any suggestions on how to keep weight on while exercising would be excellent. :-)


We also discussed my new job and that Tim and I have to move and depending on my insurance, my goal is to continue going to this clinic. I do NOT want to leave because I love my doctor and nurse, and I'm willing to make the trip as long as insurance allows it. I'll know more about this in a couple months once I get all of the new stuff straightened out. 


So, overall I'm going to keep running at least two miles 2-3 days a week and increase my calorie intake to hopefully gain a few more pounds before my next visit this fall. I'd say that's a pretty good visit. :-)