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 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 2

Today is the 2nd day, and I don't really feel any different. I will say that after last night's dose, I felt a little dizzy about an hour after I took it. It wasn't unbearable though. It's like the dizziness that Diflucan (fluconazole) gives me when I am on it. So- not a big deal to me. When I woke up this morning, I had a bit of a sore throat. Again, it wasn't terrible or unbearable. I can't be 100% sure that it was from the Kalydeco though. Like I said in one of the previous posts- I have been battling a cold or something and it could have been from "mouth-breathing" (I am a nose breather when I'm not stuffy) through out the night, or even some post nasal drip. After getting something cool to drink and blowing my nose, it went away. When I went to do my morning treatment, I didn't cough more or less than usual. It was all the same. I have noticed that I have to blow my nose quite a bit more though. I got a LOT of junk out from the time I woke up to the time I finished the treatment. Don't know if that was the medicine or not, either, so please don't think I am trying to say it is or it isn't. It's just what happened.

I took my 2nd dose around 8:30am, and think that I will stick to an 8:30am/pm schedule. That way I can take it before I leave for work, and then at night before a night treatment.

I haven't had any headaches, fever, or pain (yet) so as of right now, I don't even feel like I have taken anything. From some of my other Cysters' experience with it, they said that they didn't feel a full effect from the medicine until the 3 or so dose. So..... I guess we will see how I feel tomorrow after tonight's dose! I am feeling a little tired, but that really is nothing new. I am always, always, always tired. I am hopeful that Kalydeco will give me just a teensy bit of energy to do things I need to, and so I won't get tired so quickly doing small things.

I have to catch up on all my school homework, so I am going to do that. I will try not to forget to take notice and post if there are any kind of changes at all. Okay, as I finished that last sentence-

I just started coughing, very productive and wet. I coughed up approximately 1/4 c of mucus at one time. Whoa. I also just blew my nose and got out a bunch of snot/mucus too. It wasn't too yucky looking, about the same as when I just regularly cough, so I'm thinking that is just the top of the pile down there. I want to start exercising more- like running or something fairly... I can't think of the word... just more. But I don't have the energy yet, or the breath yet. Maybe by Monday I can start doing that!

I also want to keep track to see if my weight has gone up, so I weighed this morning. If I tell you, don't judge, remember?! It was 69.4. Okay, okay, pick your jaw up and stop shaking your head. I can't help it. Remember this is my page, and if you want to judge or criticize, then get off. I am posting this as a way to help me know where I started and where I end up. I will try to weigh every 3 days or so, and see if there will be any noticeable changes. I guess that is all the updates I have for now, and maybe I will have something good to post about next time!