I apologize to those of you who have been waiting on news from my clinic appointment last week. Life got in the way of me writing this post... Teaching has been crazy busy, and I have had things going on pretty much every night.
On the day of my appointment, I woke up to a deep, wet cough, so I went into it knowing that my lung function would not be what I had been hoping for. I was right... my lung function dropped from 47% to 45%. The doctor was not at all concerned though since my weight was still the same, and he said that he saw that drop as very minimal. We also talked about started antibiotics then, but he didn't feel like it was necessary yet because he didn't want to over react if it was just a little thing. Unfortunately, I started feeling pretty terrible this week, so they called in some antibiotics for me. I'm hoping that it will get rid of the junk I've got going on in my lungs right now.
The other big question for this clinic appointment was about CF related diabetes. I had to do the fasted two hour glucose tolerance test for the second time this year due to my May test resulting in the number being too high. Unfortunately, I had almost the exact same numbers this time, so they have sent my information to an endocrinologist who is supposed to call me to set up an appointment. I really don't know much about CFRD other than it is not Type 1 or Type 2 diabetes. It is more closely related to type 1 though. My doctor also mentioned that many times, to begin with, you just have to monitor blood sugar for a while assuming that it's not too far progressed. Right now, it's just a waiting game until I see the endocrinologist and learn more.
So all in all, my clinic appointment was not at all what I was hoping for. It is what it is though... I will just take my new obstacles and keep going. My next clinic appointment is set for November 30, so as usual, I have my sights set high for my lung function. I'm going to continue doing everything I can to stay healthy once I get rid of this little cold thing I'm battling right now.
Saturday, September 10, 2016
Monday, August 29, 2016
Nerves...
Nerves... That would be the best one word description of what is going on with me this week. I go back to CF clinic on Wednesday, and I am more nervous than usual. Why? Not only will I be doing my quarterly pulmonary function tests, but I will be doing the second two hour fasting glucose tolerance test of this year. This test is normally a yearly thing that goes along with clinic, but in May, my numbers were too high which made my doctors believe that I now have cystic fibrosis related diabetes (CFRD). Needless to say, I do not want bad news, but I will figure out how to handle it if that is what happens.
Nerves are really something that comes along with the territory with cystic fibrosis though. There have been countless times that I have been worried or nervous about one thing or another with my health whether it be lung function numbers, lung pain, getting sick, or whatever else may cross my path. It can be difficult to deal with these things, and I think that is one of the big reasons that I try not to think to much about the negative possibilities with this disease. I choose to live for today and try to be the best version of me possible. I use that in every aspect of my life as well, and that is why I tend to go with the flow in everything. I don't freak out and stress when something changes at work. I try not to let little things get me flustered because, in the end, it's just not worth it. There are so many other things to deal with without sweating the small stuff.
Anyways, even though I'm not stressing about small stuff, I am definitely nervous about Wednesday. All I can do is hope for the best though. I have done everything in my power to stay healthy, and right now, there is nothing else to do. All the same, positive thoughts are welcome. :)
Nerves are really something that comes along with the territory with cystic fibrosis though. There have been countless times that I have been worried or nervous about one thing or another with my health whether it be lung function numbers, lung pain, getting sick, or whatever else may cross my path. It can be difficult to deal with these things, and I think that is one of the big reasons that I try not to think to much about the negative possibilities with this disease. I choose to live for today and try to be the best version of me possible. I use that in every aspect of my life as well, and that is why I tend to go with the flow in everything. I don't freak out and stress when something changes at work. I try not to let little things get me flustered because, in the end, it's just not worth it. There are so many other things to deal with without sweating the small stuff.Anyways, even though I'm not stressing about small stuff, I am definitely nervous about Wednesday. All I can do is hope for the best though. I have done everything in my power to stay healthy, and right now, there is nothing else to do. All the same, positive thoughts are welcome. :)
Monday, June 13, 2016
How Exercise Has Changed My CF Life
Research shows that regular physical activity or exercise provides multiple benefits for people with cystic fibrosis. These benefits go beyond better lung function — keeping fit also helps you strengthen your bones, manage diabetes and heart disease and improve your mood.
~cff.org
Growing up with cystic fibrosis, I always made sure to stay active. It was something that my parents encouraged me to do, and even if I didn't know the science behind it, I knew that it was helping me stay healthy. I wasn't diagnosed until I was 6 years old because my lungs were so healthy due to me running and bouncing around all the time. I always fully participated in gym class, we played kickball in the back yard, I cheered in middle and high schools, and I played church league basketball. I was "healthy" and happy during that time.
The problem came during college when I chose not to focus on my health. I chose to ignore the fact that I even have CF. I stopped doing treatments, and I stopped being as active. Sure I did some things, but my activity level dropped significantly. My lung function plummeted, but you all already know that because I have written about that before. From that point on, it was a bit of a ripple effect... Activity goes down, lung function goes down, energy goes down, so willingness to be active goes down. It's a vicious cycle.
A few years ago, I decided it was time to get active again. I bought a gym membership and began working out with my sister. We were inconsistent, but at least we were doing something. I still had a difficult time motivating myself to go to the gym and to get much accomplished while there. During this time, I kept seeing posts on Facebook from a guy that I went to high school with. He had his own gym and was always posting about the programs he offered. I finally bit the bullet and emailed him asking what he had to offer. That was June 23, 2014. I was nervous because this was something unlike anything I had ever done before.
He began working with me and writing programs that would benefit my lungs. I began lifting weights and building up not only my lungs but also my muscles. I grew stronger, and I started noticing differences in how I was feeling. I started sleeping better, my lungs were feeling more open, I was getting sick less often, and my weight (which can be very difficult for those of us with CF to keep up) became more stable.
Has my lung function sky rocketed? No... But it has been on the rise this past year. I went this whole past year without having any major sicknesses! That's huge, and I credit my working out with that as much as I do my breathing treatments. I feel strong. I feel confident. I feel great! My advice to any people with cystic fibrosis is to get active. It doesn't have to be running; it can be anything. If you are a CF parent, have your child play outside riding bikes, running around, playing tag. It's so important for our health.
Working out has become part of my health plan. I'm at the gym 4-5 days a week following the plan my trainer has laid out for me. There are days when I'm not feeling it, and it is challenging and exhausting. But it is so worth it!
~cff.org
Growing up with cystic fibrosis, I always made sure to stay active. It was something that my parents encouraged me to do, and even if I didn't know the science behind it, I knew that it was helping me stay healthy. I wasn't diagnosed until I was 6 years old because my lungs were so healthy due to me running and bouncing around all the time. I always fully participated in gym class, we played kickball in the back yard, I cheered in middle and high schools, and I played church league basketball. I was "healthy" and happy during that time.The problem came during college when I chose not to focus on my health. I chose to ignore the fact that I even have CF. I stopped doing treatments, and I stopped being as active. Sure I did some things, but my activity level dropped significantly. My lung function plummeted, but you all already know that because I have written about that before. From that point on, it was a bit of a ripple effect... Activity goes down, lung function goes down, energy goes down, so willingness to be active goes down. It's a vicious cycle.
A few years ago, I decided it was time to get active again. I bought a gym membership and began working out with my sister. We were inconsistent, but at least we were doing something. I still had a difficult time motivating myself to go to the gym and to get much accomplished while there. During this time, I kept seeing posts on Facebook from a guy that I went to high school with. He had his own gym and was always posting about the programs he offered. I finally bit the bullet and emailed him asking what he had to offer. That was June 23, 2014. I was nervous because this was something unlike anything I had ever done before.He began working with me and writing programs that would benefit my lungs. I began lifting weights and building up not only my lungs but also my muscles. I grew stronger, and I started noticing differences in how I was feeling. I started sleeping better, my lungs were feeling more open, I was getting sick less often, and my weight (which can be very difficult for those of us with CF to keep up) became more stable.
Has my lung function sky rocketed? No... But it has been on the rise this past year. I went this whole past year without having any major sicknesses! That's huge, and I credit my working out with that as much as I do my breathing treatments. I feel strong. I feel confident. I feel great! My advice to any people with cystic fibrosis is to get active. It doesn't have to be running; it can be anything. If you are a CF parent, have your child play outside riding bikes, running around, playing tag. It's so important for our health.
Working out has become part of my health plan. I'm at the gym 4-5 days a week following the plan my trainer has laid out for me. There are days when I'm not feeling it, and it is challenging and exhausting. But it is so worth it!
If you are looking for a great gym in the Knoxville, TN area, Unlimited Training Systems is the place to go! The owner, Blake, has changed my life, and I am so grateful!
Wednesday, February 10, 2016
New Game Plan?
I went into today's clinic appointment full of anxiety and apprehension. I felt this way for multiple reasons. The biggest was the fact that I have had multiple trips to Vandy that didn't show desirable results. My lung function has been on the decline despite all of my efforts with breathing treatments and trips to the gym. Honestly, I was beginning to believe that I had reached the limit of my lungs and that I would only lose lung function in the future. It has truly been just as much an emotional struggle as it was a physical struggle to keep all of the hard work up. I just kept telling myself that even if I wasn't seeing what I was hoping for, I was feeling pretty good.
On top of that, I have been dealing with some pretty random and very painful joint pains. They hit a joint for a day or two making my trainer have to rethink my workouts to avoid the effected area. It has been frustrating to say the least. It has affected my ability to push myself in my workouts which could definitely have a negative effect on my lung function.
The cherry on top of my worries was the weather. Temperatures in Tennessee have been on quite a roller coaster. We saw highs in the 50's and 60's last week and then had a 30 degree drop this week. When there is a drop like that, my lungs seem to close up. They become tight, and it makes it much more difficult to breathe.
So that brings us to today. I went in expecting my lung function to be the same or lower than last time, but I was in for a surprise. I did my PFT three times like usual. My third time was my highest, and while it definitely was not the highest I have ever had, it was higher than October's. I went from 42% on October 21 to 44% today! I am ecstatic! To add to that, I also gained a few pounds which always puts a smile on my doctors' faces. The only negative from the visit is that I still don't have any answers about the joint pain.
What's the game plan now? In the words of Dory, "Just keep swimming! Just keep swimming!" I'm going to keep pushing through and taking things one day at a time. I'm on day 771 of being compliant with my treatments, and I'm working out with my trainer four to five times a week. Fingers crossed that I keep seeing an upward trend, but if not, at least I'm feeling good and enjoying my life!
On top of that, I have been dealing with some pretty random and very painful joint pains. They hit a joint for a day or two making my trainer have to rethink my workouts to avoid the effected area. It has been frustrating to say the least. It has affected my ability to push myself in my workouts which could definitely have a negative effect on my lung function.
The cherry on top of my worries was the weather. Temperatures in Tennessee have been on quite a roller coaster. We saw highs in the 50's and 60's last week and then had a 30 degree drop this week. When there is a drop like that, my lungs seem to close up. They become tight, and it makes it much more difficult to breathe.
So that brings us to today. I went in expecting my lung function to be the same or lower than last time, but I was in for a surprise. I did my PFT three times like usual. My third time was my highest, and while it definitely was not the highest I have ever had, it was higher than October's. I went from 42% on October 21 to 44% today! I am ecstatic! To add to that, I also gained a few pounds which always puts a smile on my doctors' faces. The only negative from the visit is that I still don't have any answers about the joint pain.
What's the game plan now? In the words of Dory, "Just keep swimming! Just keep swimming!" I'm going to keep pushing through and taking things one day at a time. I'm on day 771 of being compliant with my treatments, and I'm working out with my trainer four to five times a week. Fingers crossed that I keep seeing an upward trend, but if not, at least I'm feeling good and enjoying my life!
Saturday, January 2, 2016
2016 Goals
Normally, I write a New Year's post January 1st. It's a post that focuses on how the previous year went and the goals for the new year. The problem is that I've been struggling to figure out my feeling about 2015 and where I want to go from here.
2015 was difficult for me. The year started off strong, and I finally started to see my lung function improve a little. I continued with my treatment compliance and my workouts. About halfway through the year, things started to change. I had my first lung bleed, had my wisdom teeth taken out, and my lungs just had troubles dealing. My lung function dropped, and has been lower than I would like ever since. I have worked incredibly hard, and my lungs have fallen into a pattern. They feel great for a couple weeks, and then they will hurt and feel terrible for a week or so. I have felt like I've been getting nowhere with them and with my health. To top it all off, I started 2016 by getting a respiratory virus... yay me...
The second half of the year wasn't all bad though. I never stopped keeping up with my treatments, and December 31st marked two years of being compliant! I didn't give up on working out either. We have been working on my lungs in almost every workout, and I hit 210 pounds on dead lifts! I also started taking Orkambi, but the jury is still out on if I have seen benefits from it.
So that brings us to my 2016 goals. What am I going to work towards this year? What am I going to do to reach those goals?
2015 was difficult for me. The year started off strong, and I finally started to see my lung function improve a little. I continued with my treatment compliance and my workouts. About halfway through the year, things started to change. I had my first lung bleed, had my wisdom teeth taken out, and my lungs just had troubles dealing. My lung function dropped, and has been lower than I would like ever since. I have worked incredibly hard, and my lungs have fallen into a pattern. They feel great for a couple weeks, and then they will hurt and feel terrible for a week or so. I have felt like I've been getting nowhere with them and with my health. To top it all off, I started 2016 by getting a respiratory virus... yay me...
The second half of the year wasn't all bad though. I never stopped keeping up with my treatments, and December 31st marked two years of being compliant! I didn't give up on working out either. We have been working on my lungs in almost every workout, and I hit 210 pounds on dead lifts! I also started taking Orkambi, but the jury is still out on if I have seen benefits from it.
So that brings us to my 2016 goals. What am I going to work towards this year? What am I going to do to reach those goals?
- Make it to three years of 100% compliance with breathing treatments.
- Stick to my workouts (continue to get stronger and work harder).
- Work on my nutrition (find a balance between eating healthy and keeping weight on).
- Stay positive (no matter what, I will keep pushing and fighting. When times get tough, I'm going to keep going).
Here's to a new year, new opportunities, and new goals. Happy 2016!
Wednesday, October 21, 2015
Small Hiccups Are Part of the Battle
Today was my second attempt at a clinic appointment, since September 16th didn't quite work out and ended up with my car being smashed and me not actually making it to Vanderbilt. I went into today's appointment knowing that my lung function would not be as high as I would like it to be. I have been feeling more congested the past few days and really the last couple weeks.
We made it there in one piece this time. I went into the pulmonary function test expecting the worst. Even though I blew with all that I had, I just couldn't muster what I usually can. My FEV1 was 42% all three attempts. That's down from 47% in June. My concerns were confirmed. My lungs are struggling right now. The good news is that my weight remained virtually the same which indicates that I'm not sick sick... just a little low in my numbers.
My doctor and I discussed how I have been feeling the past few weeks, and she was not overly concerned with the drop in lung function. She felt it could be from allergies or just a small flare up from the MRSA in my lungs. We decided that the best course of action would be to do a round of some strong oral antibiotics paired with steroids to hopefully give me a little kick start so that I can start feeling like myself again.
She was very complimentary of my commitment to compliance with my treatments. She was very pleased with my overall health. So even though my numbers aren't where I want them to be, I'm not letting myself feel defeated. We have a plan, and I am going to push through this small hiccup like all of the others.
I appreciate all the prayers and well wishes. You all help me stay motivated to be the best version of myself every day! So thank you for that!
We made it there in one piece this time. I went into the pulmonary function test expecting the worst. Even though I blew with all that I had, I just couldn't muster what I usually can. My FEV1 was 42% all three attempts. That's down from 47% in June. My concerns were confirmed. My lungs are struggling right now. The good news is that my weight remained virtually the same which indicates that I'm not sick sick... just a little low in my numbers.My doctor and I discussed how I have been feeling the past few weeks, and she was not overly concerned with the drop in lung function. She felt it could be from allergies or just a small flare up from the MRSA in my lungs. We decided that the best course of action would be to do a round of some strong oral antibiotics paired with steroids to hopefully give me a little kick start so that I can start feeling like myself again.
She was very complimentary of my commitment to compliance with my treatments. She was very pleased with my overall health. So even though my numbers aren't where I want them to be, I'm not letting myself feel defeated. We have a plan, and I am going to push through this small hiccup like all of the others.
I appreciate all the prayers and well wishes. You all help me stay motivated to be the best version of myself every day! So thank you for that!
Saturday, September 19, 2015
Month 1 on Orkambi
Back in July, this new drug, Orkambi was approved by the FDA. Orkambi is the second drug that has come out that actually treats the underlying cause of cystic fibrosis. I wrote a post about it, and you can read that here. After jumping through hoops for my insurance company to cover the quarter of a million dollar yearly price tag, I finally started taking Orkambi on August 14.
I was told by many others who had already started taking it that it would cause quite a few side effects that would not be very pleasant. One day into taking it, I already started to feel what others had been calling "the purge." My lungs became tight, and I started coughing up a ton of junk. The chest tightness lasted for a few days, and as soon as it started to lessen, my nose turned into a constantly running faucet. They say that the first few weeks is filled with your body getting used to the new medicine and the medicine causing all of the deep down, old mucus and junk to be moved up and out of the lungs.
During the first couple of weeks, I felt pretty terrible, but I just pushed through it. The coughing slowly became less, and my nose slowed down with the running. Throughout all of it, I continued with my treatments and with my workouts which were much more difficult while my chest was tight.
I've been monitoring my PFT at home, and it did seem to drop some. At my last clinic appointment, my FEV1 was 47%. According to my at home reader, I've been running at 43% lately. A month into taking Orkambi, I was due to have my clinic appointment. This past Wednesday, I headed to Nashville for it, but unfortunately, I didn't actually ever make it to Vanderbilt. We got into a car accident in downtown Nashville... only about 10 minutes away from my destination.
My car ended up have some damage that made it impossible for me to drive it. My husband and I spent the rest of the day trying to figure out how to get back to Knoxville without a car. My insurance tried to get me a rental car, but sadly, there were none available in the correct price range. Thankfully, I have amazing friends and family, and we were able to bum rides back home.
Since I missed my appointment, I had to reschedule. I won't have my clinic appointment until October 21 now. So, we wont know for sure how Orkambi is effecting my lung function until then.
I'm just taking it all one day at a time, because it seems from reading others' stories that it takes awhile before you might see any positive lung function changes, and some don't see any increase. It's all just a waiting game right now. I'm still hopeful that I will see some of the benefits that this medicine can make happen. More updates on my progress to come...
I was told by many others who had already started taking it that it would cause quite a few side effects that would not be very pleasant. One day into taking it, I already started to feel what others had been calling "the purge." My lungs became tight, and I started coughing up a ton of junk. The chest tightness lasted for a few days, and as soon as it started to lessen, my nose turned into a constantly running faucet. They say that the first few weeks is filled with your body getting used to the new medicine and the medicine causing all of the deep down, old mucus and junk to be moved up and out of the lungs.
During the first couple of weeks, I felt pretty terrible, but I just pushed through it. The coughing slowly became less, and my nose slowed down with the running. Throughout all of it, I continued with my treatments and with my workouts which were much more difficult while my chest was tight.
I've been monitoring my PFT at home, and it did seem to drop some. At my last clinic appointment, my FEV1 was 47%. According to my at home reader, I've been running at 43% lately. A month into taking Orkambi, I was due to have my clinic appointment. This past Wednesday, I headed to Nashville for it, but unfortunately, I didn't actually ever make it to Vanderbilt. We got into a car accident in downtown Nashville... only about 10 minutes away from my destination.
My car ended up have some damage that made it impossible for me to drive it. My husband and I spent the rest of the day trying to figure out how to get back to Knoxville without a car. My insurance tried to get me a rental car, but sadly, there were none available in the correct price range. Thankfully, I have amazing friends and family, and we were able to bum rides back home.Since I missed my appointment, I had to reschedule. I won't have my clinic appointment until October 21 now. So, we wont know for sure how Orkambi is effecting my lung function until then.
I'm just taking it all one day at a time, because it seems from reading others' stories that it takes awhile before you might see any positive lung function changes, and some don't see any increase. It's all just a waiting game right now. I'm still hopeful that I will see some of the benefits that this medicine can make happen. More updates on my progress to come...
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