CF Fights Back

A lot has happened since my last post, so let me fill you in a little bit on what's been going on!
Last post, I had mentioned about my previous clinic visit, and my FEV1 being up to 61%, a 15% increase from the time before. I had also mentioned that my FEV1 had since then climbed up to over 70%! It did continue to rise a little bit more, but I had started to feel like things, once again, were heading for the worst. Now, I don't know if I'm just the type of person to panic at any sign of congestion (especially now that I have put in so much hard work), but that's exactly what had happened. I started to feel tired, and congested, and I wasn't sleeping through the night, I would wake up coughing. All the same symptoms I have always had when my numbers got low. BUT, even though I had all the symptoms of a bad infection brewing (and even the results of a sputum sample saying they were) my FEV1 had not budged. I was still holding strong at 70%. My old CF mind would be saying "this is what this disease does, it's just 'running its course'." My NEW CF mind, however, called the doc right away, arranged to get a PICC line inserted, and knew I had to fight harder to get past this.


So, of course I show up at clinic, blew a 2.71L (71%) (again, 10% higher than my previous visit), and the doc says "I don't think we need to put that PICC in". I was almost in TEARS. I was THRILLED that my number had went up (even though I knew it had before I got there), but I wasn't FEELING like a 70%. So I begged and begged, and finally they decided they would treat me for my "symptoms", even though my lung function test was telling them otherwise.


Sure enough, I went back a week later, and I had already improved 3%, Up to 2.82L (74%). And for any other CF'er that's reading this, or ANYONE who has had to have a round of high dose IV antibiotics, you know the first 4-5 days make you feel much worse than you felt to begin with! So I was surprised to have any improvement at all! So we continued on the IV for one more week, and I continued my running during this time, and show up the following week feeling better than I ever remember feeling in my life! At this point, my nerves are shot (which was funny, because I'm not usually nervous about having to do PFT's), but I had a goal in my mind. A number I wanted to reach, and I knew I could reach it on my own meter, but could I pull it off at clinic. I remember blowing, looking up at the computer, and there was a nice big "3" in front of my number, and the RT and I had a little celebration! I am now up to 3.08L (81%)!! I never, in a million years, thought I would ever see a 3L number again!


So, after seeing the doctor, we decided that we didn't need to continue on with the IV antibiotics. In fact, we decided (for the first time since March), we didn't need to continue on with ANY antibiotics. I'm feeling a little nervous about it, but I'm keeping up with my supplements and my exercise, and so far things have been good. Hopefully I will be able to maintain my success (or improve ;) ) for my next visit in January.


When CF fights back, fight harder!
NEWWW goal, 90%! Is it possible? :)

Long Overdue

So it's been almost 2 months since I've wrote a blog. I have to admit, I am not the best at keeping this updated when I think things are starting to go wrong. Let me fill you in on the past little while. 


In my last post, I mentioned that I was going to be going to clinic on that following Tuesday. Well, everything was going great, up until 3 days before clinic (just my luck), and I started to cough up a bit of blood. Nothing too too serious, but I was a bit concerned. So I took a few extra doses of vitamin K, got the bleeding under control, but of course my airways are still irritated when I get to clinic on Tuesday! My PFT's on that day were 61%, which is still FANTASTIC (a 16% increase from the previous visit 5 weeks ago) and I really shouldn't beat myself up about it, but I really wanted to see that 67% that I was blowing only a few days before.


Since that clinic visit, I've went through sort of a rough patch. I don't know if I would say that I became discouraged, but I don't feel like I have really been pushing myself as hard. I've caught a really bad cold, and have been so tired and worn down, I haven't really felt up to it much. I waited almost 2 weeks before I blew again, and I was sure that I was going to see a number in the 50's again. 
To my surprise, my first blow WITH my cold, came in around 65%! At this time, I switched up my Lipo Vitamin C for a different supplement that is also liposomal, and has Vitamin C, Curcumin, Resveratrol, Glutathione, and COQ10. The stuff tastes absolutely horrible!!! But seems to be working some magic!


I decided that it was time to get my butt back in gear, and jump back on the stair stepper.
When I started this less than 3 months ago, on August 9th, my FEV1 was being called "the new baseline" at 1.77L (46%). As of last night, October 31......... my FEV1 is 2.78L (72%)! And THAT, my friends, is 1.01L improvement in 12 weeks!


Goal #1 reached! :)

30km Weekend!

Well it's almost been 2 weeks since I've posted, so I thought I should update everyone on what's up! Things are still improving (at a more reasonable rate I would say), and I am still goin' strong!


This past week I felt like I had maybe caught a bug, and was starting to get worried. There was a few nights that I had woke up through the night coughing (since I started this regimen, I have been sleeping right through the night!), I had increased mucous, it was starting to turn yellowy green again. Needless to say... it was NOT pretty! I mentioned in one of my previous posts, I have been taking really high doses of Vitamin C! This bug has come and left faster than any other infection I have EVER had! I am so impressed! Not to mention, I work in a hospital, and I have gone this entire month WITHOUT getting sick! I think I might be on to something here!! :)


I have had a very productive weekend to say the least. The humidity has finally broke, and the fall weather is starting to roll in. For anyone that has any kind of breathing problems, you know how wonderful this is! I was able to get out this weekend and bike 20km on Saturday, and another 10km today! 3 months ago this would never have happened, so I'm super excited about it! :)


I got home from my bike ride today, and decided.. what better time than now, to do a blow!
Before I go on, I also wanted to add that during this past month I have been weening off Prednisone, and am now down to only 5mg! In 3 more days, I will be completely steroid free, and couldn't be feeling better!
Now for the results. Almost 2 weeks ago, on August 29th, my FEV1 was 2.47L (64%), and today it is up to 2.57L (67%)!! I'm only 3% away from my first goal!
I was last at clinic on August 9th, and blew a 46%. It's been stuck there so long, they were calling it my "new baseline". Of course I wasn't happy with this! I am heading back to clinic this coming Tuesday, with my lung function 21% higher than it was only 5 weeks ago, and I can't wait to "blow" them all away!

2 Years in 3 Weeks..

When I started this mission, I wasn't expecting this good of results so quickly. I had it all figured out that if I could gain 0.10L per month, it would take me approximately 1 year to reach my first goal, and even THAT seemed like a lot of ground to gain. I really don't know what to say about the speed I am improving. I'm still pretty speechless about the whole thing, but wanted to share my progress with you for the past week!

I also wanted to add that when I started my workouts, I added a few supplements to the list. I have been taking 10,000mg of Lipo-Spheric Vitamin C/day, and with the absorption rate of the Lipo-Spheric, it is supposed to equal anywhere between 50,000 and 80,00mg of regular vitamin C without the bowel issues. And let me tell you, its like opening up the flood gates with this stuff! I get such good clearance right after I take it, and feel so good for the rest of the day! Also, I have been taking 8-10g of Omega 3's every day for inflammation, and I really do think that it is having a HUGE part in why I have been able to work out as much as I have without having ANY muscle stiffness or soreness! So I am going to continue taking both of these, and see where it takes me!

Now, the lung function update. This morning I woke up and went for a quick 1km jog, and realized that it was already way to hot outside for me, so I came back and finished another 30 minutes on the stair stepper. Sat for about 10 minutes, took a swig of Ventolin, and decided to do a blow. 
In the 1 week it has been since I last blew (which by the way, seemed like FOREVER) my FEV1 went from 2.23L (58%) to 2.47L (64%)!!! It's still so hard to believe that only 3 weeks ago I was stuck at 46%, and even just this past May/June I was down to 36%. I have gained 18% lung function in 21 days, and I can't remember the last time I felt this good. I was looking over my lung function history, and I haven't had a number this high since September of 2009. I have already went back 2 years of my life, in only 3 weeks! I hope it just keeps getting better and better!

Stay tuned..

In Complete Shock!

So I told myself that I wasn't going to obsess over my PFT numbers, and that I was only going to blow on the 1rst of every month to check my progress, but I've been so excited with what I have been seeing, I couldn't resist!


I am honestly in complete SHOCK of how well this is going! It's kind of a rainy, humid day here today, so I stuck with my stair stepper inside, and made it for an hour and 15 mins today! (I'm very proud of that, as three months ago I needed an oxygen tank to walk to the washroom!). After I finished my work out, I decided to break my own rules that I've set for myself, and out of curiosity, check my numbers.


Before I post what they were, I wanted to let you all know, that I know numbers aren't everything, and how you actually feel is VERY important. I am feeling SO much better already, and I think just the fact that I am actively doing something to help myself has a huge part in that. I have so much more energy during the day, and am sleeping much better at night! :)


Now for the update! It has been only 4 DAYS since I last checked, and my FEV1 has went from 2.01L (52%) to 2.23L (58%)!!! I can't believe it!
Now 12% down, 12% to go! Can't believe I'm half way there already! I'm so excited to see what happens next!

Getting Back On Track

So it's been a week since I have posted, and also since I have been back on my exercise regimen! I've decided to start off slow, and sort of ween myself back into it, and hopefully can avoid issues with my ankles. I am happy to say, SO FAR SO GOOD! :)


A few years ago, I purchased a hand held FEV1 meter, so I am able to monitor my lung functions fairly closely. And for those of you who may be skeptical about it, I have brought it into clinic to compare numbers, and they are always within 0.05L of each other, so the thing is fairly accurate!


So what I have been doing (and I'm sure my neighbours all think I'm really something!) is running from one hydro pole to the next, then walk for one. This may not sound like it's much of a work out, but it really gets things loose and I'm able to bring up lots of really deep, nasty mucous! There has also been a few days where it's just been way to humid to go running, so I still make sure to do at least 30 minutes inside on my stair stepper (preferably while I'm doing my treatments... it gets it in there soo much better!)..


NOW for the GREAT NEWS! It has only been ONE week since I was last at clinic, where I blew 1.77L (46%), and have been stuck around those numbers for the past month or two. I thought I would check my progress this morning, hoping to have seen maybe a 1 or 2% increase.. or ANY change at all really, and to my surprise I blew an astounding 2.01L (52%)!!! I am so excited! My first step in the right direction!


6% down.. 18% to go until Goal #1 is reached! :)

Gathering My Thoughts

To start things off, for those of you who don't know me, my name is Nicole, I'm 24 years old and was diagnosed at birth with Cystic Fibrosis. I have always been fairly healthy my whole life despite having CF. It wasn't until recently that it seems everything has come crashing down around me, and it has really made me take another look at things.


What DOES it mean to be 24? What SHOULD life be like for people my age? I always pictured that this period of my life would be the time for taking vacations, getting married, starting a family. It should be time for laughter and fun and making lifelong memories with friends, family, people you love. And although CF doesn't STOP you from doing these things, it definitely makes them difficult.


So what IS life like for a 24 year old CF'er? For me? Like I said, I have always been fairly healthy, but over these past few years, it feels like I am literally just sitting here watching my lung function drop.. 80%...70%...60%...50%...40%...30%...monthly trips to the clinic, PICC lines and IV antibiotics for weeks.. months at a time. Home care, oxygen tanks and steroids. People all around you waiting for, or receiving double lung transplants. It all becomes so overwhelming, and sometimes you just sit paralyzed with fear, not knowing what is going to happen next month, next week, or even tomorrow ...


And then it all came to me one night when I was sitting in my hospital bed. There HAS to be SOMETHING I can do to fix this. I started to look at my body as a machine that I was living in, and machines CAN be fixed. I decided then and there that I was going to do whatever it takes to get myself out of this horrible mess. I got up out of my hospital bed that night, cranked up my O2 tank, and started jogging on the spot. The first night I only made it 4 minutes, but I could already tell it was starting to help. The next day I made it to 6 minutes. After only a few days, I was up to 20 minute cycles 3 times a day and was feeling awesome. Within 2 weeks, my lung function had went from an all time low for me at 36%, back up to 53%, and I no longer needed the oxygen tank (thank god!). I do admit that I have somewhat slacked a bit on my jogging since (due to some bone/ankle issues) and have slipped back down to the high 40's, but I am not giving up! And jogging is just the beginning! I WILL fix this!


So I am starting this blog to share my story along the way (and of course my successes,because I KNOW I will have them), and to hopefully give hope to all the other CF'ers out there. This is going to be a long, bumpy road for all of us. Hold on tight...
Goodnight