January Clinic Appointment

On Thursday, I went to my regularly scheduled Cystic Fibrosis clinic appointment. I knew that it was time for my annual blood work (plus genetic testing) and a chest x-ray, so I decided not to bring the kids with me. Anna had school and there's no way very-active Calvin would have been happy with all of the sitting/driving.

I decided to head up to Chicago earlier than my scheduled appointment to hopefully avoid the long wait in the lab and knock out any other tests before seeing the doctor. I arrived at the hospital around 9am and was able to get right into the lab to get my annual blood draw (7 tubes) and an extra tube for genetic testing. I believe that last time I had my genetics tested was about 10 years ago, and they were only able to identify one of my mutations - G551D. The other is still unknown. With all of the new medications in the pipeline, it's important to know exactly what my mutations are. As of now, I'm on the best medication for my mutation. Kalydeco is specifically for G551D, so the likelihood of me switching to a different medication any time soon is low, but learning my other mutation is still good information to have.

Jan 2019 - more areas of white
(plugging & mucus), especially
in the upper right lobe. Also a bit
more in my left lung.

April 2017

After my blood draw, I went downstairs for my chest x-ray. I actually requested getting the x-ray because I've been having such a rough time with coughing up blood lately - my latest episode was that morning when I woke up. I was so frustrated after seeing that, I emailed the nurse and asked her to put in the order. I wanted to see how/if my lungs have been affected by the sporadic hemoptysis episodes over the last five months or so.

After the chest x-ray, I waited to get a clinic room forever. As much as I love my doctor, I can't stand how long it takes. I feel like they're always running behind. Anyway, I did my PFTs, met with a new physical therapist (did a 6 minute walk test), saw the pharmacist, social worker and dietician before the doctor finally came in two hours after my scheduled appointment.

Thankfully my PFTs were pretty much unchanged from September's appointment. I was really glad and pleasantly surprised. But, that didn't explain what's going on with my lungs.

My doctor and I had an excellent, over an hour long, conversation. *That's what happens when I don't bring the kids* I showed her the calendar charting all of the dates that I've coughed up blood or had some streaks in my mucus. It seemed to be at least every two weeks, but without any kind of pattern or cause. It's happened when bending over, walking up stairs, just standing there, laying down, sitting up.... no pattern. Twice since August I've been on antibiotics - one round of Cipro in August and one round of Augmentin in November for a sinus infection. Even when on the oral antibiotics, I was having blood/streaking.

Then we finally got to the bottom of it - sort of. It's been months since I've been on inhaled antibiotics. I stopped taking Cayston in the summer or fall because I noticed I was coughing up blood more frequently while on it. I had tried a month of inhaled Tobi, but it made my lungs feel super tight, so I only managed about two weeks on it. So, since the fall, the pseudomonas (bugs in my mucus) in my lungs has been free to do whatever since it wasn't being knocked back by inhaled antibiotics. My doctor thinks this has caused a lot of inflammation in my lungs and irritation of my airways leading to all of the hemoptysis episodes. Thankfully, it hasn't made my lung function drop.

It made sense, and I'm really hoping she's right. So with the mucus sample I provided at the appointment, the doctor requested that the lab test the resistance of my mucus against the inhaled antibiotic called Colistin. As soon as we hear back, and are sure that my bugs are susceptible to Colistin, I'll hopefully be starting it. My doctor also wants me to go back on Azithromycin on Monday/Wednesday/Friday to help decrease the inflammation in my lungs. I originally stopped taking it about 5 years ago when we were trying to get pregnant for the first time. Its kind of a bummer to be put back on a medication that I've been off of for so long, but it's definitely needed right now. I feel like my list of non-IV medications is slowly dwindling, so I am really banking on the Colistin to help give my lungs the boost they desperately need.

I think we have a good plan in place and I'm trying to be optimistic. I know that 80% FEV1 isn't too far from my baseline of 85-88%, but I don't like seeing my numbers there. I hope that the medications will help my lungs get back in shape. I also need to really make an effort to add exercise into my routine to get my lungs working more. This is always the hardest part for me due to time constraints.

Right now my next appointment is scheduled for April, but I wouldn't be surprised if she wants to see me back sooner to see if the meds are working.

Next hurdle.... getting the meds approved my insurance and shipped out in a timely manner...

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. :)

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. :)

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).

CF Clinic Appointment

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

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

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

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

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

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

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

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

Compliance + Kalydeco = awesome lung function!

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

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

January Clinic Visit

Anna and I arrived home from a successful clinic day just a little while ago....but next time, remind me not to take a toddler on a six-hour round trip. :)

We started our day off around 5:15am, which is typical for us during the week. Tim accidently took the car to work because that's what he's used to, so Anna and I had to take the truck to Bloomington (luckily it's on the way) to switch it for the car. Poor Anna thought we had arrived at our destination and was not very happy with me when she went from one car seat into another. So for the next hour she was fussing and fighting sleep. Finally, she fell asleep and stayed asleep for almost another hour. We were on track to make it to clinic about ten minutes early, until we hit lovely Chicago traffic. Since we were completely stopped, I texted my doctor and let her know we'd be about a half hour late. The traffic ended up clearing quicker than I expected, so that gave us plenty of time to park and get in a diaper change/bathroom break without having to rush to check in.

So happy to be out of the car and in her "chair"

My appointment was pretty uneventful, which the doctor and I both agreed was a good thing. Thankfully, even though I'm not on Cayston right now, my lung function is pretty much the same as last time, at 88%. 😃 I've been lucky enough (so far) to not catch whatever Tim has and all the junk that's going around school. I hope it's able to stay that way these last couple months of winter, but that would be pretty much a miracle.

I talked to Dr. Dowell about getting an Afflo Vest, especially for travel, so she's going to see what she can find out for me before my next appointment. I'm also in the market for a travel nebulizer, one that can be plugged into the car. If anyone uses/knows a good brand, please let me know.

After seeing the doctor, we went to get my labs done and finally, a chest x-ray. I was concerned they wouldn't allow Anna in when I was getting the x-ray which would not allow me to get it, but they were very helpful. They x-ray tech just took her in the stroller behind where she stands and did both x-rays very quickly before Anna realized she couldn't see me. It worked out perfectly.

Anna really was a good sport during all of this at the hospital. She was talking to me more than I expected her to with people around, but of course, just stared at people when they talked to her. :)
Next time I take her though, it'll have to be a time where we come up the night before because that poor girl was so sick of sitting...who could blame her?! Every time we'd stop at a light she would say, "home" because she thought we'd pulled into the driveway; or while driving on the highway, many times she said, "Mommy, out!" As much as I know the doctors like to see her, and I like her to be comfortable with Mommy going to the doctor, I think next time she'll just stay with Grandma!

Kalydeco Is Not A Cure

Great, amazing, wonderful things are happening in the CF community, and have been for the last few years. The release of Kalydeco in January 2012, and now Orkambi in the beginning of July. They're making huge, positive impacts on a great deal of the CF population!
Unfortunately, I've heard these medications (more so, Kalydeco) referred to as a cure more times than I would like. They are NOT! They help fix the mutated gene, but do not completely correct/reverse it.

If Kalydeco was a cure:

• My lungs wouldn't be filled with bacteria-infested mucus
• I wouldn't still need to do 30 minutes of Vest twice a day (or more when sick)
• I wouldn't need at least 4 nebulizer treatments everyday
• I wouldn't need to swallow at least 15 digestive enzymes a day
• I wouldn't need several different vitamins and other various pills per day
• I wouldn't need to visit my CF clinic 3 hours away every three-four months
• I wouldn't have had an awful Spring with numerous episodes of hemoptysis
• I wouldn't need annual chest x-rays and blood work
• I wouldn't need a high-fat, high-calorie (watch the carbs & sugars though because you're borderline CF Related Diabetes) diet

I started Kalydeco on August 30, 2013. I expected immediate, dramatic changes when I first started the drug, but didn't notice too much of a change. Even though all of these things are true, I'm very glad that I had an excellent talk with my CF doctor (have I mentioned how much I love her?!) was

Dr. Dowell with Anna
from my clinic appt

reminded today how lucky I am to have Kalydeco and how much it really is positively impacting my life.

• Typically, CF patients exhibit a slow, steady decline in lung function over a few years time. My doctor kindly reminded me today that my lung function has been very stable over the last two years. Even when it declined during the beginning of pregnancy, it shot right back up at the end and has been stable since then.
• I have not had to increase my enzyme dosage which is also common for CF patients, which means my pancreatic function is stable.
• I've slowly and steadily been gaining weight over the last two years. This is one of the positives I have noticed over the last two years and have been very pleased with.
• I had a very easy, healthy pregnancy which may not have been the case without Kalydeco.

Despite not feeling immediate results, I am VERY lucky to be on Kalydeco, and now I can positively answer people when they ask how it's been working for me. I'm very happy to have 'normal' lung function, even if it means doing all of this work to keep it there! I hope it stays like this for a long time. :-)

Current stats

Pros & Cons of Pregnancy - 3rd Trimester

I created a pros/cons list for my first two trimesters of pregnancy to help me remember my pregnancy - to read it, please click here. Here's my list for the last trimester.

Pros

• Your movements are hysterical! Since you're getting bigger, you're doing more body rolls and stretches which morph my belly into very funny and unusual shapes!
• No swelling, heart burn, or extreme fatigue.
• I still have enough energy to go walking almost everyday for 30-45 minutes. This also gives me something to look forward to each day.
• Weekly doctor appointments also give me something to look forward to each week. I love seeing you on the ultrasound each week and see how much you're growing and how squished you really are!
• Sleep! Thankfully I've still been able to sleep well each night! As I get further along, it's getting increasingly uncomfortable to stay on one side for a long period of time and to roll over, but luckily I'm able to fall back asleep quickly after the process of rolling or having to pee a couple times a night.
• Lung function: Despite my awful weekend over 4th of July (see below), at 36 weeks, my FEV1 was 83%!! That's back to my pre-pregnancy baseline lung function! Thank you Cayston & thank you, Baby Girl, for giving Mommy's lungs some relief.
• Nesting: I've been nesting basically since I stopped working at the end of May, but due to that, I've been way on top of things. The floors are vacuumed several times a week, everything is ready in your room (except your crib because Daddy's been working outside), hospital bags are packed & ready to go, your car seat bases have been in both vehicles since 35 weeks...there's not much left for me to do. :)

Cons

• It's going by so slow and I'm bored out of my mind!! It's so hard sitting around all summer just waiting for you. I know I shouldn't complain because I've had a ton of time to prepare for you, but I am so anxious to finally have you here, that by 33 weeks, there wasn't much left to do!
• Bathroom & gas issues. This started towards the end of my second trimester and hasn't really gone away. I added one extra enzyme every time I eat, which helped for about a week... I guess it's just something I'll have to deal with until you're finally out. I'm guessing it has to do with how much room you're taking up and how you're probably squishing my intestines and pancreas.
• Discomfort & Exhaustion - over 4th of July weekend (34 weeks) I went through a fever, headache, shortness of breath, and chest soreness & tightness. It felt like I was hit by a truck that weekend, especially because it came out of nowhere and came on so fast. Thankfully with a few doses of Tylenol and lots of rest, it slowly went away over the next week, but that's what happens when you're carrying an almost 5lb baby around all the time apparently.
• Weight loss: Due to the bathroom issues described above, I've actually lost around 3-4 pounds this trimester. Thankfully you're still growing well, but I worry what my weight is going to be after delivery.

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!

Positive Thoughts Thursday

It's been too long since I've done one of these, and there are way too many positive things going on in my life right now to neglect mentioning!

• I'm 26 years old, with Cystic Fibrosis and will be 37 weeks pregnant tomorrow!
• My latest PFT (done less than a week ago) was amazing! My FEV1 is 83% and my small airway lung function is 92%!
• Baby Girl is growing steadily. :-)
• It absolutely amazes me what my "sick" body can do!!
• I have an amazing, hard-working husband! We've been in our house for just about a year now and it looks like a completely different home, inside and out!
• Tim's sister, Katrina, had her second child yesterday - our first niece, Alayna! I'm so excited that our girls will be so close in age. And the thought of watching all of the cousins grow up together is even more exciting!
• I've been walking with a friend 3-4 mornings a week which has been great exercise and great adult interaction over summer.
• For every hot week of summer, we've had a nice, cool week to balance it out. I absolutely love being able to have the windows open, especially at night, to feel the fresh air throughout the house.
• My classroom is ready to go for my maternity leave! Its a wonderful relief knowing that's all taken care of already.

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. :-)

CF Clinic Tomorrow

I finally have my next CF clinic appointment tomorrow afternoon. The last time I was there was in February, I was 16 weeks pregnant, had been off Kalydeco and any antibiotics for months, felt like crap, and blew my lowest FEV1 ever...clearly, not a great appointment.

Since that appointment I've started my Kalydeco back up (the night I got home from clinic), did a 28 day cycle of Tobi in March, a 28 day cycle of Cayston in May, have stuck to my treatments diligently, and am 30 weeks pregnant. At the end of my Cayston cycle, my mucus production was pretty much non-existent which was unusual, but a welcomed change for once. Since being off Cayston for just over a week, I've seen a slight increase in my mucus production, but I've still been able to take deep breaths and have been feeling generally well lung-wise.

Except, over the past couple of days, my mucus production has significantly increased, especially during the day, but I still don't feel CF-sick, or any kind of sick for that matter. I'm curious if this is pregnancy related or CF related, and I'm very curious to see what my FEV1 looks like tomorrow. A week ago, I would have bet money that it was back in the low 80s, but now I'm not sure where all of this extra mucus is coming from and if it's going to effect my results tomorrow....as long as they're up! I know that one PFT doesn't determine too much as far as how I'm feeling, but like I said, a week ago I felt like my lungs were so clear and now they're filling up out of no where....I guess that Cayston really did something.

I've also been feeling extremely gassy and bloated again this week, but I think this is pregnancy related somehow. I had these same symptoms at the beginning of May, around my 25th week and they lasted a couple weeks. Then I thankfully had a couple weeks of relief until it started again at the beginning of this week.

Don't really have a point to this post, other than documenting how I'm feeling before my appointment tomorrow because I really have no idea what to expect. I'm assuming I'll have to go on at least one more round of inhaled antibiotics before delivery so that my lungs are in the best shape possible when Baby Girl arrives. Stay tuned tomorrow evening to see how it all goes down. :-)

Clinic & 15 Week Update

Today I had my first CF clinic appointment since becoming pregnant. And to be completely honest, I've been feeling like total crap the past few weeks. Thanks to my stupid insurance change, I was supposed to start Tobi a week or two ago, but it's still being approved, ugh! So since I haven't started the antibiotics yet, I knew my PFTs were going to be pretty low today.

It started a few weeks ago, when I felt like my lungs became flooded with mucus over night. It came on so suddenly and not like a typical CF chest infection, that I was thrown off. I had an increased cough and increased mucus production, but it wasn't really a different color, just so much more. Of course I tried to fight it myself, but it got to the point where it was interrupting my sleep and making me completely exhausted, so I called in the "big guns" aka: Tobi. Now, I haven't been on a full month of Tobi since August, so I really thought it would help clean me out... but insurance decided to get in the way of that...thanks insurance! Then on top of it, I started developing some crazy sinus infection which has clogged my sinuses so bad that it started coming out of my eyes yesterday morning, I know, lovely! So I've been doing two sinus rinses a day for about a week which temporarily help, but it wasn't enough. All I have to say is... thank goodness I had my appointment today!

Anyway, so my PFTs were down, as I expected. My FEV1 was 69% - I've never seen numbers that low, but I can't say that I was surprised. My doctor didn't seem as concerned as I thought she would and she said that my PFT graph looks symmetrical and looks much better than how I'm feeling, so that relieved me a bit. She also wasn't too concerned because thankfully, I have plenty of options right now. I'm starting my Kalydeco back up tonight after being off of it for nine weeks - I'm glad that I was able to stay off of it during the critical development period of my pregnancy. I'm also going to start Tobi whenever my insurance decides to cooperate. As for my sinuses, I'm going to continue my sinus rinses followed up with some Nasonex. I'm hoping that the combination of these things will get my lungs back to normal soon before Baby starts squishing them.

As far as my pregnancy goes, everything is going very well, today is the last day of my fifteenth week. As I said before, I'm proud of myself for not exposing Baby to Kalydeco, or any antibiotics, during its first trimester. This week I've been pretty exhausted...I feel like I'm feeling more like I should have first trimester now in my second... but I think I'm finally on the right path to feeling better. This week, the baby was the size of a naval orange and could sense light shined into the belly even though its eyes are still fused shut, and can now move all of its limbs and joints now. I can't wait to feel Baby move soon!

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?! :-)

Clinic Visit

I had my quarterly clinic visit today, which kind of crept up on me this time because Tim and I have been so busy lately. Usually I'm really good about planning ahead with questions, but this time I just showed up! I haven't been feeling the greatest this week. I woke up Saturday with a sore throat and post nasal drip (my first sign of a cold). It's slowly made it's way through my sinuses and now it's in the naggy cough & into my chest stage. I've even noticed that my voice is pretty hoarse tonight -- that could be a combination of hours of singing in the car (to and from Chicago) and coughing!

The past few months I've backed off of exercise, pretty much entirely, because I have been trying to focus on gaining weight. Even though I haven't been running or doing the workout videos, but lungs have been feeling very well since my last appointment...up until this week, of course! I always hate when I'm sick for clinic visits because I feel like it's not a true reflection of how I really have been feeling. I hate seeing low (for me) PFT numbers just because I have a cold. And that's exactly what happened at my appointment today.

As soon as I got into a room, I had one nurse taking my vitals and the other setting up the PFT machine -- they never move this quickly. Oh, and before I got my room, they weighed me in the hall and I was a whopping 109 lbs...still! That means no weight gain since January, but at least I haven't lost anymore! Anyway, once they did my blood pressure, O2 level, and temperature, the guy was ready with the PFT machine. He handed me the mouth piece and told me to start, but didn't give me nose clips. When I asked for them, he said they don't use them anymore - I was totally thrown off, I've never done a PFT without nose clips before! Haha! Either way, I started and as soon as I was on my first inhale, he told me to take a deep breath in. I was caught off guard because I wasn't preparing for it, but I did it anyway. My first FEV1 came out at a 74! Yikes!!! My chest is feeling pretty tight, but I was really bummed to see that low of a number. So I coughed my brains out for a few minutes and while the guy was sitting at the computer, he told me to start whenever I was ready. I said, "Well, I'm ready when you are!" He just told me to start breathing and was not really paying attention - it was quite annoying. This time, my FEV1 was 78 - better, but definitely not where I wanted it to be. As I was coughing from the second test, the nurse took the mouth piece away and I asked if I could do it a third time, he said, "No, this is good enough." Again, I was annoyed. I know that I've done this test a million times in my life so maybe he thought I didn't need to be coached, but to me, it makes so much of a difference when the person is actually paying attention and encouraging me! I'm not blaming him for my low PFTs - I know that my lungs are not feeling well right now and that my numbers probably wouldn't be any higher if I did the test three more times, but I was frustrated that he didn't seem to care.

Anyway, after that was over, I met with the dietitian I met her for the first time last visit, and she's wonderful. She remembered everything we talked about last time (even if she just looked over my chart before she walked in the room - at least she showed interest!) and asked how things were going. I voiced my concerns about still have absorption issues and we came to the conclusion to try adding a probiotic to my daily regimen to see if that helps. She also told me to continue to eat as much as I have been. She said I'm doing everything right, it's just not working yet.
Then she told me that one of my vitamin levels (Vit D) is actually high!!! I've had low vitamin levels as a child and transitioning into the adult clinic, so my doctor up'd my vitamin intake a lot over the past few years! It's finally paid off! I can cut back on the amount of Calcuim + D vitamins I'm taking. :)
We also discussed my lack of exercise. I explained that I stopped running because I felt like it was a major factor in my recent weight loss, but the dietitian explained that I should still really try to exercise as much as I can because it's still very good for my heart and lungs, but just make sure to replace the burned calories as soon as I'm done. Looks like I'll be picking up my running again - which, I'll admit, I've definitely missed!

Finally, I saw my doctor. She, too, was actually just getting over a cold, so she understood how I was feeling. Before I could even say anything about my FEV1, she asked how involved the nurse was. I told her that he wasn't really paying attention and apparently I wasn't the only one of the day to complain. Fortunately, my doctor was actually pleased with my PFTs today. She said that my graph still looks great and symmetrical to my last PFTs, and that my lungs are doing very well considering how I feel. I was glad to hear that she wasn't concerned. She's not too worried about my weight either. It's something that we're working on. She agreed that the probiotic should help and that I need to keep up my calorie consumption.

So just a few minor changes from today's appointment: Cut back on Calcuim + D, add Probiotic daily, increase exercise and continue consuming around 3,000 calories a day. I'm really hoping this combination will be successful for my weight and lung function!

These are my PFT graphs from January 2013

These are my graphs from today - I notice a big difference in the
bottom (don't know that that's for), but the angle of the
top is very similar to the Jan. ones which is great.

2011: A Year of Reflection & Motivation

I cannot believe that I've had this blog for an entire year now! 2011 has definitely flown by this year - 72 (now 73) posts later, I've learned so much about myself in this year of writing, it has been amazing.

There have been some ups: Helping organize the first annual Great Strides in our town (and huge support from my family, friends, co-workers in raising money), our new apartment, the amazing development of Kalydeco!, we adopted our cat (Archie), celebrating our first wedding anniversary, becoming an aunt for the second time, I became an organ donor, and of course the beginning of a new me: 100% compliance since July 31st (153 days) and the addition of my exercise routine = increased PFTs!

And some downs: Several interviews but no teaching job, lots of doubts/worry about if having a child is the right thing for us - baby w/ CF or not?, and crappy/smoking/nasty neighbors.

But the 'ups' have definitely out-weighed the downs this year, and I cannot complain about that one bit. This has been a wonderful year of reflection and motivation for me and I appreciate all of you reading and commenting on my posts. I can't promise another 70-something posts next year, but I'll try my best. :-)

Goals for 2012:

• Get my FEV1 into the 90s and keep it there!
• Complete a 5K
• Keep forging ahead with our pregnancy discussions                                                                       and maybe become a mommy
• Find a full-time teaching position
• Stay as happy and healthy as I am now! :-)

Normal

According to my doctor, nurse and today's PFT results, I have normal lung function! WOO HOO! I had my clinic visit today at 11:00am, so I left my house around 9 to make sure I gave myself enough time. It only took me an hour and fifteen minutes to get to the hospital today - I think that's record time - there was no traffic! Of course, then I was 40 minutes early by the time I parked, but that's okay, got a little reading in.

I got in right away, they weighed me (same weight, yay!) then put me in a room, took my blood pressure (fine), oxygen levels (99%), and asked me a million questions about my medications and how I'm feeling (wonderful!). Finally, it was time for my PFTs. My goal for today was to get my FEV1 into the 90% range. The first test I did, I got an FEV1 of 88% - not bad, up from last time. I told the respiratory therapist (lady administering the test) that I was really shooting for 90s, so she was really encouraging and she said, "Okay, this time you'll get it." I tried again - same thing, 88%. Tried one final time (they always have me do at least three to get the average) and it was the exact same thing again, so I had to face  the fact that I wasn't getting into the 90s this time. The RT was still very encouraging telling me how 88% is still great, but I was still kind of bummed. When my nurse and doctor both saw my results, they were very pleased and pretty much just told me to keep up the good work!

I know I shouldn't be disappointed, but I kind of am. I have been really trying hard at keeping myself healthy - I was hoping the PFTs would reflect how I'm feeling. I'm at 144 days of compliance with my Vest and nebs, and I've been going to the gym twice a week for two or three months now. I feel much more than just 2% better. I'm definitely not going to stop anything I'm doing because I know it's working because I feel fantastic no matter what the PFTs say. I was glad to see an increase, rather than just maintaining, so I'm just going to keep pushing myself to keep going to the gym because I think that's what really making the difference. It also feels really good to be able to say that I have the lung function of a 'normal' person!

Tim and I have a very busy, travel-filled weekend ahead of us, starting as soon as Tim gets home from work tonight. I'm determined to keep my compliance streak alive even with all of our traveling, so as soon as I finish my PM treatment today, I'm packing up my Vest, nebulizer and accessories into the trunk to come with us on our little road trip across the entire state of Illinois. It'll be tough fitting in all of my treatments, but I can't let 144 days go to waste.

I hope everyone has a very Merry Christmas and I'll be sure to fill you in on all of our activities next week (adorable pictures included).

CRAZY!

Sometimes this is how I feel!

This is the word I have used over and over to describe the past few weeks! My schedule has changed probably at least ten times and when it finally feels like we're getting into a routine of things, something else comes up! I never realized how much goes into setting a routine for a child, a classroom, and especially for a whole school. For those of you who don't work in the education field and have children in school, please be understanding and patient with teachers, at least, through the first month because it's crazy the amount of work that they do!

The class I'm in is made up of 28 students so it gets kind of hectic. Luckily the classroom teacher has years of experience and so much patience, and there are four assistants in the classroom to help also. All help is needed sometimes, but I think we're making progress. I know that I would definitely be struggling with this class if I was their teacher - especially first year! (I'm going to wait until the end of this week to see if I can get a few more 'kinder quotes', and then I'll post what I've got so far.)

As far as my health goes, I'm finally getting over my cold that I talked about a few posts ago. I decided not to go on antibiotics because I've been keeping up with my treatments so well, I think that helped me get it out on my own. Oh, and speaking of treatments, I have to brag a little bit here. This past weekend, we went camping with Tim's whole family, (I forgot my camera!!!) which we do every year and is always so fun, and this year I am very proud to say that I did all of my treatments while we were there - I only missed one puff of Advair! I'm really hoping that if I keep up with everything that I can maintain the lung function I had at my doctor appointment a month ago - I'm hoping I didn't decline after this little chest cold.

One thing I have definitely been having trouble with recently is exercising. I brought this up in my post a couple weeks ago also, and someone made a comment about how much I move around at work which I never thought about. I am constantly up and down off of the floor with the kids, crouching down to help them at their seats, chasing after them when they try to leave the playground or classroom (yes, this has happened a couple times), playing with them in PE and just walking with them in the hall wherever they go. I'm thinking about getting a pedometer to see how many steps I'm taking during the day because I know I'm definitely getting a work out when I'm at work, too. I would still like to keep up jogging/walking/Zumba whenever I get my energy back, but I'm so exhausted when I get home the past couple weeks, that I do my treatments, eat dinner, then just lay around for the most part until it's time for bed. I really wanted to be able to jog a mile without stopping for Out Run CF next weekend, but I haven't been running in over a week, so I'll just try my best. If anyone has suggestions about how to get back into it, I'm all ears. I'm going to try to get Tim to go on walks with me a couple times a week again to at least get some extra movement in the evenings.

Doctor Visit & New Vest!

Had my doctor visit today and it went pretty well (took some pictures for you). I had my PFTs scheduled for 10 and then I would see the doctor at 11:30. So, to start the very long day, I woke up a little before 6:30 so I could get in a set of treatments and some breakfast before I left around 7:20. I got about 20 minutes into my drive when I heard on the radio that traffic looked terrible on pretty much every way into Chicago, so I was not looking forward to my drive! I got backed up in traffic a LOT sooner than I normally do and at one point I was going 30mph and it felt fast. Needless to say, it was a long ride, especially because I had to pee the whole way!! (Sorry for the TMI)

Lovely Chicago morning traffic

Luckily I left with enough time and I pulled into the parking garage at 9:30 and checked into 5E-Pulmonary Procedures around 9:45 for my PFTs at 10...just in time! My pulmonologist wasn't very friendly or encouraging today, so it wasn't very exciting doing my PFTs. Sometimes you get the people who really encourage you and tell you you're doing great, which really helps sometimes, but this lady was pretty crouchy - oh well. She left the room several times, so I took a couple pictures to show you what the full PFT machine looks like. (If she was nicer, I would have asked her to take a picture of me in it...)

The machine on the right is where I sit. On the left is where the pulomonologist sits
and gives me instructions on how to breathe. All of my breathing is recorded on the computer
and made into graphs. 

The blue piece is what I put in my mouth (and I have nose plugs)
and it records all of my breathing.

When some of the tests are performed, the door is closed. Right now the door is open.

I did pretty well, overall, on my PFTs. They didn't go up like I wanted them to, but the best thing is that they didn't go down. The percentage in my small airways went up significantly, thanks to Advair, so I'll be continuing that. I updated everything in my "Health Stats" tab, but here's a quick overview. 

FEV1: 2.70L - 86% which is up a little from last time :-)

FVC: 2.97L - 76% which is pretty much the same. 

I did about 8 different tests today in that machine. I did a few in the beginning, then they give me a nebulizer of Albuterol and she tested me about 4 or 5 more times after that. In the test I breathe normal for a couple breaths, then I take in a deep breath and blow it out as fast as I can, for as long as I can (meanwhile the pulm. is saying "BLOW, BLOW, BLOW!") and then I take a deep breath in at the end, and I relax. I did this about 8 times, plus several different other breathing techniques/tests in between. I was pretty wiped out after, but it felt good. I was able to cough up some lovely samples for them, which they always love. 

After my PFTs were finished around 10:30, I walked down to 4D-Pulmonology to see my doctor. I actually got in a little early to see her, which never happens, so I was pretty excited. (But I missed you, Penny!) 

My doctor's huge binder with all of my files! Lots of paper
work every time. 

My doctor was very please with me keeping my weight the same and keeping my lung function stable/slightly up. She pretty much told me to keep doing what I'm doing and to keep it up. I'm hoping that with continued exercise and compliance with my treatments (haven't missed one since July 30th!) that hopefully my numbers will start going up instead of staying where they are every time. We talked for a while about everything that's been going on and keeping healthy. We decided not to change anything that I'm doing because it seems to be working. As I mentioned before, since the Advair seemed to have a positive affect on my small airways, I'm going to be keeping that up. So I'll be back again in three-four months, depending on when I can get back in. Probably sometime in the beginning of winter. So after we were done chatting, which lasted a while (it's pretty amazing to have such a great relationship with my Dr!), I finally headed out.  

This is the view from the parking garage, right behind my car.
Of course, it's always packed so I had to park on the top level. 

Of course the traffic is still there when I leave at 1:45!

Ahhh! Now this is more like it. Back home! :-)

When I got home, I had a little package waiting for me....my new PINK vest! Here it is!

Losing Hope, But Gaining Motivation

Well, let's face it - it's more than half way through August, most schools have started this week or will be starting next week and I still don't have a teaching job...I'm losing hope. On Monday, I was all pumped about still applying because I was so sure that I was going to get one of those last minute positions that come up. So I emailed over twenty principals about job postings, and I've applied over and over each day online, and all of the responses I've gotten are ones saying, "Thanks for applying, but that position has been filled. Try again next year." They don't exactly say 'try again next year' but pretty much. It sucks. I'm more upset at the fact that I'll have to go through this entire (May-August) application process again next year. It's so frustrating! But, I'm very excited that I still have my teaching assistant job that I had last year, at the same amazing school. :-)  I absolutely love the school I worked at last year (it's where I did my student teaching, too). I'm excited to go back and see all of the kids, and start getting the educator part of my brain going again - it feels so good!

Another positive about me keeping my assistant job is less stress. I think that whenever I get my first teaching job ("maybe next year" -- man, I feel like a Cub's fan!), I'm going to be so stressed out about doing everything right. As an assistant, I still try to do my best with everything I do with the kids, but I definitely don't have as many responsibilities as a classroom teacher.

I think this will be a good time for me to really focus on my health and exercise. Not having the added stress of my own classroom is giving me extra motivation to kick my butt with treatments and exercise. I have a doctor appointment next Thursday - a week from today - so I'm really anxious to see what my PFTs are. I haven't been exercising like crazy, but I've definitely been doing more the past couple weeks than I ever have, so I'm hoping that's helped. I've also been completely compliant with my treatments for three weeks straight - which doesn't sound like much, but it's always been harder for me to get both treatments in on the weekends with stuff going on, but I haven't missed one in three weeks! :-)
If my PFTs don't go up, I'm going to be really bummed because I feel like I've been working my butt off. But I just need to keep doing what I'm doing and I think, and hope, that I'll start to see some awesome results. :-)