Never give up and always have hope!

Okay, so the results of today's appointment:
I lost weight- but we think that is because I was so stressed out about graduation and finals. There wasn't much worry about that.
Xrays were good- in fact, there was one particular place on my lower lobe that was completely cleared out and that is something since it has been there forever it seems!
PFTs- From my previous appointment on February 21: FVC 34%, FEV1 22%, FEV25/75 8%, PEF 56%
PFTs- From today's appointment- FVC 47%, FEV1 32%, FEV25/75 11%, PEF 77%!!

Now, I did have a hospital admission and got released on March 11th, but my PFTs did not have any significant change from the admission PFTs from February 21st! My doctor was very pleasantly surprised to say the least. There has been no way I could get above 40% FVC on my own. We even looked back 6 months for more of a baseline, and this is even better than then (my FVC was 45%)! So- all in all, it was a VERY good appointment! I haven't been able to impress my doctor for a very long time!

I did 6 full PFTs and did not cough. I did 4 asthma tests and did not cough. It was awesome! I was so nervous after the PFTs because I "normally" hack my head off after the very first one. But this time, I went through 6 without any kind of coughing! I had to make myself cough just to get a sputum culture. Craziness. Pure craziness.

The doctor stopped my hypertonic saline. He stopped my Brovana. He stopped my Bactrim. He stopped my Tobi. Not even bi-monthly (or whatever) anymore. I have had 25 normal flora cultures, so the doctor completely took me off all antibiotics! Whaat?

I did lose 3 pounds, but... I think stress had a lot to do with that. Some people gain weight during stressful time, some lose. I am a loser. Lol! The doctor wasn't too concerned about it, and I am going to work to make it up for my August appointment!

Overall- I feel... wonderful. There is no way I want to even go back to how I was before. I can't begin to describe how much different I feel. Not only physically, but also mentally and emotionally. I know now that I can improve. That does wonders for my mind. I used to get so so discouraged when my lung function numbers would barely improve or not even move. I didn't think there was ever a time that I would get to see a 50% FVC anymore. Now I'm at 47%?! This just goes to show me that there is always hope. Always. I am just overwhelmed (in a good way) of how well today went. Really. There hasn't been that kind of improvement in my numbers in at least 4 years. I haven't felt this well in 4 years. 4 years. 4 years I have felt like there was no hope- that there wasn't any getting better, and I had to accept that I would continue to get worse, even though I didn't want to. Even by doing my medicines and treatments religiously, I could never just feel good. Now, I wake up feeling good. I get through the day feeling good. I go to bed feeling good. There is just no words for me to describe my happiness. My gratefulness...

I am so thankful to Rebecca, Mandy, Marci, Sandy (just to name a few) and others who had inspired me to push to get my doctor to write me a prescription. Even after he said no the first time, I continued with research, reading, and blog creeping enough to write him an email filled with articles and posts that finally convinced him to let me try Kalydeco. I am so glad that I didn't give up the first time. I just knew that I needed to try it- especially after I had read about similar mutations benefiting from it. I am just thankful....

. I think today proved a lot to me. The number one thing is to never give up. Even though I knew that deep down already. Never give up, and always have hope. I will continue with Kalydeco, and I have hopes that I will have improved even more in the upcoming months. I have hope!!!

One month checkup!

I have a doctor's appointment tomorrow and I am kind of nervous to see exactly how things are now after a month. I am trying not to get my hopes up at all, but I can't help it! I know that I should t be discouraged if there isn't much (if any!) improvement, but I know I probably will be. I know I have to remember that this medicine wasn't specifically for me, so it really didn't have that great of chance anyway. I will be sad if there is little to no improvement though, because I know that I feel better!

Anyways, I will post tomorrow on the results. Yikes.

Day 30 already?!

Wow, I guess today marks a month since I've been on Kalydeco. Wow. It does not seem like it has been that long! I am happy (and proud of myself) to say that I have not skipped even a single dose since I started! Yay! Lol. :)

I wished I had some new updates to post, but everything is about the same. There are only little things that I have noticed, but I can't be sure that it's not stemming from something besides the medicine.

I haven't exercised since the mile on the treadmill. I did something to my back and really hurt it! It hurt for almost 3 days straight. Then, I started to have pains in my left side- between my ribs and my hip. It hurts when I put pressure on the inside. Like when I squat down or bend over or things like that. It's not as bad today as it has been, though. It hurts when I move around at night, like to change sleeping positions. The night before last, I woke up in the middle of the night just drenched with sweat! I'm not sure what the deal was there, since I was in shorts and a tshirt and had my air conditioner on. But, I haven't done that again, so it was just a one time thing.

I have been feeling tired since... Wednesday I think. But- that is the day that I found for sure that I was able to graduate. I think that all the stress and tension I had about school just kind of went "whoooosh" and left. I think now I am tired from NOT stressing or worrying for once! I know it sounds crazy, but I honestly think that my body was used to being stressed out and now that I feel like a huge burden has been lifted, I am feeling just worn out! I feel like I could sleep for hours and hours on end!

The good news is that I am not really feeling CF bad. Which is something that I hardly ever say. Yes, I do have times where I am short of breath or am coughing, but my lungs don't feel bad. There are times when I just know that something is going on in my lungs that's not supposed to, and there are times that I feel great and then find out that something's not right. This being said, I have no idea how the doctor's appointment is going to go on Tuesday. I can see myself getting a great and awesome report and coming home for 3 months, but I can also see some unexpected infection pop up in there and need some "tuning up" for a couple of weeks. I don't know.

I am honestly nervous about how this appointment will go. More so than normal. Not because of the chance of a hospital stay, but because of the results of the PFTs and X-rays after a month on Kalydeco. I know that I feel different -better different- and I want so desperately for it to show on paper!! I just want to see some improvements! Oh, I want that so very badly... I guess we will just see. What happens, happens. Whatever will be, will be. That's become our motto.

So until Tuesday, I will be going ahead and preparing for a hospital stay, just in case. And I will update on Tuesday sometime after the visit to let you guys know what's going on...

WHOOHOO!

I just got news that I passed my classes and that I will be graduating!! I'm so happy! This takes LOADS of stress off my shoulders. Now I think that with no stress, I can focus more on doing more exercise, staying healthy, and doing what I can to make sure next week's appointment is awesome!!!

Also- sorry I haven't posted lately- I walked a full mile on the treadmill Monday (GO ME!!!!) and really did a number on my back. I was down for about 2 days not being able to do anything at all except stay in bed! But the good news is that the lungs are feeling pretty good still! :)

Day 23- whaaaat?

So I forgot to post yesterday that I exercised again. Go me! I walked 3/4 of a mile. It took me 24:52, but I think that's a major improvement to doing nothing since I haven't had the energy or feel-good to!

Today I got up when the alarm went off so I could start a treatment before eating and meds. I went through the whole thing and never coughed. Not even needed to try to cough. Ookay. So I ate and took my morning meds, and about 5 minutes after I ate, I felt like I needed to cough. I was annoyed that it happened right after I ate, and really did not feel like throwing up. So I started coughing, ready to throw up breakfast, but my coughs were so dry that nothing came up. At all. That never happens. NEVER. In all my years, I have NEVER coughed with no sputum. I really don't know what to think! My first thought was "oh no, I'm too clogged up and nothing will come out!" BUT. There is NO feeling of congestion, no wheezing, no tightness, no.... nothing at all!

It took me less than a minute to catch my breath and breathe normally, and all I've done since then is just little clearing-throat coughs. I'm not sure what's going on, but I think I like it! I wonder if this is common or if it's just me??

I had a wonderful dream last night that I went to the doctor's appointment on the 8th, and my PFTs and X-rays were so much improved that the doctor didn't even know what to say!! Oh, how I want that to happen so badly!!!

Day 21- feeling better...

Today started out kind of yucky- I was really sore from work all week and my body and mind were exhausted from stressing out! But despite all of that, I actually got up and exercised today. I was kind of surprised I did it, but I didn't have anything else to do and I didn't feel as bad as I had been so I just decided to do it. I walked on the treadmill for 18 minutes total. This was only a half a mile though because I was going at 1.5 for 15 minutes then 3 for 3 minutes. It may not seem like much to anyone else, but I was sweating, muscles burning, and lungs burning when I stopped.

My sputum was kind of streaked with red, but I wasn't really concerned as it was just barely noticeable. I felt dizzy right after I got through, but after about an hour I felt better than I had before. I've been coughing a lot more since I did it, but I think I am breaking some of that junk up! My body overall is feeling much much better since I started prednisone and asthma meds. I think those coupled with treatments and exercise will put me on the track of feeling good and gaining weight (muscle).

In fact, I weighed today and am at 70.4, so that means I have gained a pound in 3 weeks. Not bad when I don't gain ANYTHING or actually LOSE a pound or more within that time frame. Hopefully I can increase exercise workouts and stick to it so that my doctor's appointment on the 8th is GREAT!!! I'm looking forward to it, but am also anxious to see what the verdict will be on continuing or stopping this way of treatment. We will see.

Also- will you guys send some prayers up, good vibes/energy/juju, or good thoughts my way for this weekend? I am on the verge of not graduating because of a long hospital admission, and am waiting on word to see if I will get to. So... If it all works out the way I am praying it will, I will be a college graduate when I go see the doctor!!
*Fingers and toes crossed*

Day 19

Sorry, I know I haven't updated in a while. Things are so crazy right now between health, school, insurance problems, family things going on... Whew. I'll just summarize if I can and if that's okay.

So I hadn't been feeling good at all, and finally called the doctor on Monday the 23rd. I explained my symptoms and everything, and so I was prescribed Prednisone because it sounded very much like it was all asthma-related. So, I was to start it that day and if I am not feeling better by Thursday night, I have to go see the doctor because there could be an underlying infection somewhere.

I woke up Tuesday morning with really bad stomach pains, and felt dizzy. I overall could already feel a difference though. I wasn't so out of breath, and I actually went more than 3 hours without an inhaler or a treatment. I did feel better than I have breathing-wise.

Today I woke up with a little bit of stomach pain. Also, I'm coughing more than usual. I'm not coughing up more mucus, just coughing more. It almost feels like a dry cough until I make myself cough hard, and I can feel like there is something breaking up in there. I am also having to blow my nose more too. Whether this means that I am on the recovering side of whatever I had and Kalydeco is doing more, or if there is something else going on, it's hard to tell. It's hard to know for sure what the medicine is doing now, because there is so much difference in how I breathe, cough, feel, everything since I started. I know there is a difference, but I don't know how I am supposed to feel. Does that make sense?

So, I will see how today goes. Hopefully this coughing thing I have going on will go away. We'll see.