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. :)
Showing posts with label Tobi. Show all posts
Showing posts with label Tobi. Show all posts
Sunday, September 23, 2018
Thursday, December 21, 2017
30 & 31 Weeks
Thursday, December 7th - 30 weeks
Something about getting to 30 weeks today really gets me excited and feels like an accomplishment. It's like we're in the home stretch! The longer you're in there, the less nervous I get about you being born early. I know that nothing is guaranteed, but I feel like as each week passes, your chance of survival just increases that much more.
Your movements have been getting so much more interesting. You're still sitting pretty low, but because you're getting bigger and running out of room, your movements are a lot more noticeable from the outside, especially when I'm reclining or laying. It's so fun to watch you jerk around and guess what we're seeing - a head, your back, legs, arms?! Sometimes it feels like you're doing the worm! You've had some really strong kicks/punches lately which always catch me off guard! But this is absolutely my favorite part about being pregnant. I love feeling you move all day long and I especially love watching you move in the evenings. Every little (or big) jab is an excellent reminder of how lucky we are that you're still doing well. Along with your movements, comes some tightness in my belly sometimes. I can't tell if these are Braxton Hicks or just the way you're positioned at the time. They don't hurt too bad, just a weird tight feeling and don't typically stick around for long. I know it's pretty normal to be having Braxton Hicks around this time (and I think I did with Anna). I'll have to run it by my nurse on Monday and see what she thinks.
Sunday, December 10 - 30w, 3d
Your room is painted! It was a big deal for me to get the room painted because it's one step closer to becoming your room and farther away from being the office. I love the blue we chose - it looks excellent on the wall and on your crib.
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| One wall is blue and the rest are gray |
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| Your little head or booty sticking up! |
I had an appointment today with the nurse practitioner at MFM and everything is going well. Sugars have been decent the last two weeks and your constant movements let us know that you're doing well, too. Your heart rate was 140s-150s today, my weight gain is good (about 13lbs so far) and that's about it. Nothing exciting, which is good. Even though we're within single-digit weeks of you being born, we need you to stay comfy for several more!
Thursday, December 14 - 31 weeks
We're two months (and one day) away from your official due date! I'm heading to CF clinic today, so I'm curious to see what my numbers look like. I started inhaled TOBI about a week ago and it slowly seems to be helping. I'm guessing (and hoping) I won't have to go back until after you're born. I am not looking forward to the long drive today!
Monday, December 18 - 31w, 4d
My clinic appointment went well on Thursday. My lung function remains at 85% and my small airways even increased slightly, so that's always good to hear. I'm not a big fan of the way TOBI is making me feel (scratchy cough, dry mouth), but it seems to be helping for now. Dr. Dowell did say that I am welcome to stop TOBI at any time and get back on Cayston. I'm coming up on two weeks on TOBI, so I'm hoping to stick it out the full four weeks to introduce my lung bacteria to a new med that it hasn't been exposed to in years.
The doctor wants me to come back one more time in January, but as long as I'm feeling well, I'm not planning on going. I do not have enough sick days to cover my maternity leave, so I don't want to use up one more before I have Brother.
We celebrated our first family Christmas on Saturday with Tim's whole family. It was a lot of fun hanging out with everyone! Anna had a good time with her cousins, even took a nap for a while in between all of her fun. It was all fine and dandy until Anna threw up four-five times on the way home. It's an hour drive between Grandma's and home, but Saturday night took us about two hours. The poor girl was complaining of a stomach ache about 20 minutes into our ride, so we figured she had to go to the bathroom and told her we'd stop at the next gas station....until we heard the all too familiar sound. :( We pulled over and got her cleaned up as best as we could. Thankfully she had received some new clothes and jammies that day, so we changed her into those. This happened three more times on the way home and we were quickly running out of things to clean her up with and things to change her into. It was a long, exhausting, late night.
It turns out, whatever she had eaten must not have agreed with her. Even though we all ate the same stuff, her body did not like something. She ended up puking up absolutely everything in her tummy, even after we got home. Finally, around 4am, she was done and was able to get some sleep. Thankfully, when she woke up yesterday, she was on the mend. She was able to keep down water, then some medicine, then apple sauce and toast. By early afternoon, I had to keep her from jumping on her bed - she was feeling back to normal! I'm really grateful that she didn't have a fever to go along with it and that it only lasted those 12ish hours. I'm also very glad that she is feeling back to herself and can go to school for these last few days before break, and that Tim and I didn't get sick right along with her.
Friday, June 6, 2014
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. :-)
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. :-)
Thursday, April 3, 2014
20 Weeks
Friday, March 28 - 20 weeks
We're halfway there little girl, how can that be?! And even better than that....I felt you move last night AND this morning!!!!! Daddy and I (mostly Daddy) were moving furniture in the house so he can sand and refinish the rest of the floors. When I sat down to take a break, I felt little movements really low in my belly. I rested my hand there for a while and definitely felt several more over the next few minutes. So I called Daddy over to see if he could feel, but of course you weren't moving as much and when you did, he said he couldn't feel it. It happened again this morning, in the same spot, so I grabbed Daddy's hand again, but he couldn't feel you still. :( These movements are much stronger to me than I expected, so I thought maybe Daddy could feel them too, but not yet. I'm hoping he'll be able to feel you soon, too!
Wednesday, April 2nd - 20w, 4d
You are moving like crazy in there, little one! It is so cool to feel! The first couple of days I could only feel you when I was laying down and really concentrating. But now I can feel you when I'm sitting, too. I've noticed you the most at work whenever I'm able to sit and relax (which isn't much), usually during guided reading and after I eat. I still think you're movements are too subtle for Daddy, but I know you'll be getting stronger and bigger and he'll be able to feel you, too. The movements don't feel like "flutters" or kicks, more like round little flipping movements. I can definitely understand how people would get them confused with gas/bloating, especially those who've dealt with a lot of that before. I just love feeling you move and the best is when it comes out of no where. :)
Health-wise I'm feeling great! Tomorrow is my last day on Tobi and my lungs are feeling much better. My mucus production is much less, I'm coughing less during the day, and thankfully not at night anymore. I'm sure part of this is contributed to the Kalydeco, too.
This week we start measuring you from head-to-toe (it was head-to-rump prior) and you're now supposed to be around ten inches long - about the size of a banana. This week you are practicing your swallowing and producing your meconium (which will be your first poop). Mommy didn't pass this when she was born. It was blocked in my intestines which was a huge indicator of my CF, but I'll tell you that story when you're old enough to understand.
Its crazy to think that you'll be here in four months! We can't wait!!! Daddy's trying to keep me out of stores so I don't keep buying you super adorable clothes, haha! I can see how easy its going to be to pick up a thing or two here or there, but I'm really going to try to restrain myself. We have your first shower, my staff shower, at the end of the month and I'm really looking forward to that because then we can slowly start putting your room together. Daddy's working really hard to get lots of projects done before you arrive. Right now we have all of our living room, bedroom and office furniture literally stacked in your room (along with our mattress shoved in the corner) so he can refinish the rest of the floors - they look great so far! Your Daddy is a very hard worker and one of the most creative people I know and I really hope you get that from him!
ThisWe're halfway there little girl, how can that be?! And even better than that....I felt you move last night AND this morning!!!!! Daddy and I (mostly Daddy) were moving furniture in the house so he can sand and refinish the rest of the floors. When I sat down to take a break, I felt little movements really low in my belly. I rested my hand there for a while and definitely felt several more over the next few minutes. So I called Daddy over to see if he could feel, but of course you weren't moving as much and when you did, he said he couldn't feel it. It happened again this morning, in the same spot, so I grabbed Daddy's hand again, but he couldn't feel you still. :( These movements are much stronger to me than I expected, so I thought maybe Daddy could feel them too, but not yet. I'm hoping he'll be able to feel you soon, too!
Wednesday, April 2nd - 20w, 4d
You are moving like crazy in there, little one! It is so cool to feel! The first couple of days I could only feel you when I was laying down and really concentrating. But now I can feel you when I'm sitting, too. I've noticed you the most at work whenever I'm able to sit and relax (which isn't much), usually during guided reading and after I eat. I still think you're movements are too subtle for Daddy, but I know you'll be getting stronger and bigger and he'll be able to feel you, too. The movements don't feel like "flutters" or kicks, more like round little flipping movements. I can definitely understand how people would get them confused with gas/bloating, especially those who've dealt with a lot of that before. I just love feeling you move and the best is when it comes out of no where. :)
Health-wise I'm feeling great! Tomorrow is my last day on Tobi and my lungs are feeling much better. My mucus production is much less, I'm coughing less during the day, and thankfully not at night anymore. I'm sure part of this is contributed to the Kalydeco, too.
This week we start measuring you from head-to-toe (it was head-to-rump prior) and you're now supposed to be around ten inches long - about the size of a banana. This week you are practicing your swallowing and producing your meconium (which will be your first poop). Mommy didn't pass this when she was born. It was blocked in my intestines which was a huge indicator of my CF, but I'll tell you that story when you're old enough to understand.
Its crazy to think that you'll be here in four months! We can't wait!!! Daddy's trying to keep me out of stores so I don't keep buying you super adorable clothes, haha! I can see how easy its going to be to pick up a thing or two here or there, but I'm really going to try to restrain myself. We have your first shower, my staff shower, at the end of the month and I'm really looking forward to that because then we can slowly start putting your room together. Daddy's working really hard to get lots of projects done before you arrive. Right now we have all of our living room, bedroom and office furniture literally stacked in your room (along with our mattress shoved in the corner) so he can refinish the rest of the floors - they look great so far! Your Daddy is a very hard worker and one of the most creative people I know and I really hope you get that from him!
Friday, March 14, 2014
17 Weeks
YOU'RE A GIRL & SO IS YOUR COUSIN!!!! We told all of the family at Danner's 100th birthday yesterday and everyone cheered and applauded when we both said "girl" at the same time! Danner's excited too because she'll be having her first great, great-granddaughters. Overall, it was a great day with family. :) Lots of people commented on how much I've popped since they've seen me last and how they're so excited to finally do some baby girl shopping. You and your cousin are going to be pretty spoiled, but we also think you're going to have to be pretty tough to hang with all of your older boy cousins.
Daddy and I have had your first name picked out for a couple years and it very special to us. Aunt Katrina and Uncle Joel are still deciding on your cousins name.
Pregnancy and health-wise I've been feeling much better! I've been on Tobi for four or five days now and I'm barely coughing at night and my sinus issues are almost all the way cleared up. I'm curious to see at my next appointment if I'm gaining weight. Its hard to tell because my belly's getting bigger, but I'm not sure if I'm gaining weight, or that's just you growing.
Last night, I woke up in the middle of the night with a cramp in my left big toe! I've always had them in my calf, but never just a toe. I rubbed it for a few minutes, then made myself get up to go to the bathroom so I'd walk on it. It seemed to go away when I went back to bed, but it was strange. Guess I better make sure I'm drinking enough water throughout the day.
March 13 - 17w6d
I had another leg cramp two nights ago - the night after the "toe incident". Daddy told me I need to really make sure I'm not dehydrated. It weird because I drink at least two bottles of water during the day at work, but I guess that's not enough. I'll have to increase my water intake in the evenings, too. Lung-wise I'm still feeling good. Been on Tobi for a week now and I'm feeling much better than I did a couple weeks ago at my appointment. I'm definitely not back to 100%, but I'm getting there. I think by the end of this cycle of Tobi, my lungs will feel fantastic....just don't start squishing them yet!
Thursday, March 6, 2014
Positive Thoughts Thursday
It's been way too long since I have done one of these!!
- I finally received my Tobi in the mail today (for anyone keeping track, its been almost a month now... gotta love insurance)!!! I'll be starting my 28 day cycle this evening and am really looking forward to how I'm going to feel when it's done. I think the sinus rinses, Kalydeco and Tobi are just what I need to clear up whatever the heck I've got going on right now. Although I have to add, I'm feeling slightly less sinus-y than I did a week ago. :)
- I also received a phone call today setting up my first round of Cayston. This is another inhaled neb which I will alternate with Tobi to help keep my lungs clear. According to my doctor, typically insurance doesn't like when CFers are on both (even though they're alternating months and never on both at the same time), but it doesn't sound like my insurance is putting up a fight...thank goodness! I know many CFers who prefer Cayston over Tobi, so I'm curious to see how it works for me.
- I logged into Facebook this evening while doing my treatments and saw that my blog has been ranked 17th in the Top 35 Cystic Fibrosis blogs (check out my new award on the right)!! How cool is that?! I know that I've been slacking lately, but I really appreciate the constant support & comments from my readers. I hope to be spreading awareness and information about what it's like to live with CF - especially that it's not the end of the world!! I can still Live, Laugh, Love, Breathe & Be Happy! :)
- This Sunday, we'll be celebrating Tim's great-grandma's 100th birthday!! Her official birthday is tomorrow, and we usually celebrate her birthday the first weekend in March, but this year she pushed it back a week because she didn't want to celebrate her 100th without being 100 - didn't want to jinx herself! :) The picture on the right was from when we went camping (yes, she goes every year) this past September. She is one of the funniest and sweetest ladies I have ever met and I am privileged to be a part of her 100th birthday celebration on Sunday!
Friday, February 28, 2014
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!
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!
14 Weeks
Today is the last day of my 14th week and its starting to feel much more real. My belly is becoming more obvious and we were able to see you again today at your ultrasound. Your heartbeat was 150bpm and we were able to see your arm & leg bones, your spine, kidneys and bladder.
I'm also pleased to know that you are healthy! We had the Harmony screening done (blood test) to check to see if you were at a higher risk for Downs, Trisomy 13, Trisomy 18 and Turner's syndrome. The results came in on Tuesday and everything looked great. You are not at any higher risk for any of those things. Daddy and I were also able to find out what you are because they could tell from your DNA!!! We're not sharing with everyone until March birthdays, so that Aunt Katrina and I can share together. Your sex was confirmed today during your ultrasound, too, so it's for sure. :-)
I've gained about a pound since my last ultrasound which puts my total weight gain at 3 pounds so far. Today the doctor said I should gain 25-30 pounds this pregnancy... I'll try my best! Health-wise, I've been feeling pretty junky. The last week or two, I feel like my lungs have flooded with mucus and I've been coughing a lot. I feel like this is how I should have felt when I stopped Kalydeco in December, but it's just now catching up with me. My MFM and CF doctors are fine with me starting Tobi, so I should be starting that within the next few days and really hope that helps get all of this crap out. I also have my CF appointment next week, so I'm curious (and a little nervous) to see my lung function, but so excited for everyone to see my belly and your adorable pictures!
Here are a few of your pictures from today!
Monday, May 13, 2013
CF Awareness Month Blog #13 - Medical Terminology
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| Bronchiectasis |
Bronchiectasis: A fancy way of saying scarred/inflamed airways - at least that's how my doctor explained it to me. This occurs from chronic lung infections, typical in CF patients.
Burkholderia Cepacia (B. Cepacia): A bacteria that can get into your lungs which is typically resistant to most antibiotics. I do know that any CF patient who carries this bacteria is asked not to attend any CF related events, such as Great Strides. Definitely something I don't ever want to get!
Tobramycin: Antibiotic used in patients with pseudomonas. I'm currently on TOBI which is a nebulized form every other month so that I don't become resistant to it. I remember when I first started it how much I hated the taste of it. Now it makes such a positive difference in my lungs when I'm on it, I don't even think about what it tastes like.
Hemoptysis: Coughing up blood or bloody mucus. This has happened to me and the first few times it was very scary. Thankfully I've learned to back off my treatments if it does happen, and that unfortunately, it's just something that happens every once in a while.
Hyperglycemia: High blood sugar levels. CF patients are at a higher risk for developing CF Related Diabetes due to scarring in the pancreas and its inability to produce insulin or regulate insulin. This is something that I'm currently considered 'borderline' for. I've been monitoring my blood sugars, keep exercising, and I've made some major adjustments to my diet to help control my sugars. Anything I can do to avoid insulin injections!
Thursday, January 10, 2013
Positive Thoughts Thursday
Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm going to compile a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.
- I love my job! Although I am extremely exhausted this week since I didn't do a thing over break, I am thankful to be back at work. I crave routine and I just love my class. They crack me up. Today one of my boys said "yeah buddy!" when he saw that he was at the "Board/Card Games" center.
- My students are so smart! :-) It's so cool to see how much they have learned from the beginning of the year! They're like little sponges! I have some who came in knowing barely any of their letters to now beginning to read! Makes me so proud! :-)
- A new episode of Impractical Jokers is on tonight. It's on TruTV and HILARIOUS! If you've never seen it, I highly recommend it! Tim and I die laughing every episode! For those of you who've seen it, who's your favorite? I really like Joe and Murr! :)
- I'm 10 days into my TOBI month and I've been feeling really good. Tobi usually makes me cough quite a bit more when doing my treatments, but I haven't had a lot of mucus production lately - which is a welcomed break. I've been feeling like I've been able to take some nice deep breaths without hacking up a lung, so that's been really nice. I like being able to breathe like a normal person. I hope it shows in two weeks when I have my next CF clinic appointment.
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