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!!!

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...

Day 15- booooo

What the heck. I am still not feeling good. It's so aggravating. I don't know what's going on.

I don't feel congested, although I feel out of breath- still. I'm up to 4 treatments a day, and inhaler sometimes in between. I'm considering calling the doctor. I know a lot of you are probably going (you should have already gone, yadda yadda) but my doctor/hospital is almost 3 hours away, so I can't just take off and go on a moment's notice. Plus- gas prices don't help either. If I do have to have a tune-up, I can't do home IVs because it's so far away, and have to spend the WHOLE time at the hospital. So it's not as "easy" as you think to decide when to see the doctor. If I am not better by Monday, I'm calling to see if I need to make a trip. This would be majorly inconveniencing, as I am still doing homework and interning. But, what good is it to choose anything over my health?

My symptoms are:
Shortness of breath
Hard to catch my breath
Major headaches (almost migraines)
Fatigue
Wheezing
Feeling feverish

I have a scheduled appointment on May 8th...