The Coughing Blonde

A blonde just looking to breathe a little easier…

Nothing lasts forever …

As I write this post at 5:00am this morning, I think to myself 9 days ago was my last post…9 days ago I had nothing to new to report…but nothing lasts forever…
Over the past week I haven’t feel any change…I did have a second week evaluation appointment, where I filled out some questionnaires and had a bunch of blood draws, EKG’s and PFT’s …nothing too glamorous besides those acronyms!  Of course the main question of the day was “Are you feeling anything!?” which unfortunately was an answer of “absolutely nothing” But that didn’t deter anyone including me, it could take more time, it could be the placebo, or frankly it could be nothing, after all, this is just a trial!
A highlight of the past 9 days was receiving a delicious “care package” from my SPECTACULAR friend, Lizzy. It was filled with delicious goodies for when I need a fatty snack on the go to take with the trial drug ..I seriously have the BEST friends EVER!!!
One low point was on Sunday when I had a tiny bit of hemoptysis. I always get panicked when it happens, because I’m usually terrified it will turn into a serious situation, however, by Monday evening the tiny bit that it was had subsided.
Fast forward to last night, Tuesday night spin class! Tuesday night has my favorite instructor; not only does she kick our butt, she has the best music and is extremely entertaining to watch and listen too. Class started off the same as it always does.. Fast, furious, hot and sweaty..but about 30 minutes or so into the class when we were sprinting during one of the songs I noticed something, I was not as out of breathe as I usually am..*WAIT*…could something be happening? I went ahead and turned my resistance up and little more and sprinted even faster. I was not gasping for air, or having to tone it down a little (which I usually have to do) That has been the very FIRST MOMENT since I started on this trial journey that I may have actually felt an effect from the drug..I was overcome with hope, happiness and sweat of course 😉 I motioned to my friend Jen on the bike next to me, this was too good not to share, at first she thought I was trying to get her attention because I was dying through the drill, but when I told her what was happening we both let out a collective “hurraaaayyy” over the music!!! The rest of the class I felt empowered, I literally didn’t want it to end, I wanted to spin my little legs away all night long 🙂
I’m not getting my hopes up too high, but I am however excited to have had a moment like that, and be able to post an exciting update!
Our last song in class was Guns n Roses November Rain and it couldn’t have been more perfect.
9 days ago I had nothing new to report, 9 days ago I was in a lull, 9 days ago I was wondering when I’d be able to post some sort of update involving feeling something from this drug, but nothin’ lasts forever, even cold November rain…

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Spinning my lungs away

Who doesn’t love weekends?! Especially long weekends?!!?
And there was finally some sunshine out!
I had the privilege of having Friday off and spending it with one of my favorite people, my friend Jennifer!
Jen and I decided to take up spinning back in December. We spin about 2-3 times a week. For me it’s been more like 1-2 times these past couple months. In the summer I much prefer running outside as much as I can. Since I started my trial I haven’t been to a spin class.
Since we both had Friday off we decided to go the 9:15am class..or as I call it “the housewives class” I was curious to see if I would feel any change during class, spinning is usually extremely tough on my lungs the ENTIRE time!! Welp, let me tell you that class definitely was far from easy!!!!!! It was just as hard as it’s ever been! But that’s ok, pain is only the weakness leaving the body!!! So I’ll continue to go ahead and sweat that weakness out!
The rest of the weekend I was a busy bee, it was non stop!!! Saturday, I went to breakfast with my awesome old roommate, Nicole, Saturday evening I got to have an early dinner after a shower meeting with Jen’s family and Sunday, Ryan and I went and joined Ryan’s family downstate for a Father’s day cookout. There was one question throughout the weekend that came up more than once, everyone wanted to know how I was doing with the trial!
I was a little sad to report I haven’t really felt much of a difference. However, even with the fact that I had no changes to report, it was still great to discuss the trial and talk about ALL the amazing things that should be coming down the road.
Today, I started my antibiotic that I inhale 3x a day, 2 weeks on, 2 weeks off. Like I said in previous blogs I’m hoping that starting it up will give me that good clear out that I need! I also am coming up on 2 weeks!! These past two weeks haven’t had much action on the lung front. I have noticed I’ve woken up several nights coughing, which I never really do too much, but other than that, same breathing, same coughing, same treatments, same blonde hoping to breathe a little easier, with the same attitude that all good things come to those who wait 😉

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Give the gift of LIFE

Tonight’s blog is dedicated to little Sarah who finally got her new lungs today! Huuuuraaaay!!!

She has a long road ahead of her, but she will be able to breathe a little easier walking down that road now.

This story has been all over the news, I posted a link to an article below:

http://www.cnn.com/2013/06/12/health/pennsylvania-girl-transplant/index.html?hpt=he_c1

I can’t wrap my head around why more people aren’t organ donors, however, they are outraged when stories like this come up. In fact, only 45 percent of people in the United States are organ donors…WTF right?!

There are thousands of people awaiting a second chance at life, I truly believe the best and greatest gift you could ever give someone is their second chance. I have come to know some BEYOND amazing people with Cystic Fibrosis who have either received a lung transplant, or who are on the list awaiting one.  It is a bittersweet circumstance that one life lost is another life given, but what one amazing legacy to leave behind being someone’s hero and giving them the gift of life… *LIVE life LOVE life GIVE life*

http://donatelife.net/register-now/

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Rainy Day 7

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Day 7!! One week in the books!!!!!!!! The above picture is me taking my first pill on morning #7!! 15 minutes before that I scarfed down a strawberry frosted pop tart and a janette cookie that one of my co workers brought in for me,  compliments of his good’ole Italian mother!
….It was a cloudy, rainy day here in New York. I haven’t felt any big changes at this point. A couple things to note, over the weekend Ryan said he noticed that I didn’t cough at all throughout the night, which I tend to do in hotel rooms since usually the AC is going. (Unfortunately, air conditioning wreaks havoc on my lungs for some reason)
Also, I still have a productive cough in the mornings, but I’ve noticed it hasn’t lingered too much by the time I’ve gotten to my office; on top of that I haven’t been clearing my throat too much thanks to that lovely little nemesis knows as “post nasal drip” I sometimes have issues with.
However, last night I did wake up with a cough and I also had some coughing with production going on this afternoon..soooo again who knows!!
I am wondering once I start my antibiotic, Cayston (which is through a nebulizer, 3x a day, 2 weeks on/2 weeks off) if it will be more effective with the treatment. I am starting that Monday!
As I think back to this time last week, I think how excited, anxious and hopeful I was about this trial to start!! Not knowing what effect it would have on me. I find myself obviously still thinking those things, still wondering what’s ahead for me in the trial, but it’ still waaaaay soon and I have a long ways ahead of me. And on this cloudy, rainy day I am once again reminded that “life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” …good thing I love to dance!..the rain for that matter, that will ruin my hairdo 😉

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13.1 Miles or Bust!

It was a crisp, cool, cloudy morning in the Adirondacks, a great morning to go ahead and run 13.1 miles, a great morning for awesome accomplishments to be made, a fantastic morning to cheer on our friend Corey in the Lake Placid half/full marathon!!!
I’ve never been on the sidelines at any race, all the races I’ve been to I’ve been a participate in, so I was beyond excited to be a cheerleader on the sides and give back the encouragement that people have given me during my races!!
Ryan and I left for Lake Placid on Saturday, after me packing and double checking about 20 different times that I had my study drug for Saturday night and Sunday morning.
When I leave for trips, I hate that feeling of puling out of the driveway and thinking you forgot something. This literally happens to me every time, and almost every time I don’t forget anything, but that never eases the feeling when I pack the next time.
I wanted to be prepared to have some sort of fatty snack with me just in case I was unable to time my pills with dinner that night or breakfast that next morning..this was definitely something new to consider when going out of town that I will have to plan for the “back-up fatty snack”
Ryan and I are ALWAYS on the go, especially in the summer (hello wedding season!) and most of the time when we’re traveling we’re eating all our meals out or have more than enough access to grab a quick snack, but nevertheless I just always want to be prepared! So I threw in more than a handful of salted almonds into a plastic baggie and put them in my purse.
Out the door we went and a little over 2 hours later we arrived in Lake Placid!!
Corey, Serena, Ryan and I had a delicious dinner that night at our hotel restaurant, it timed out perfectly with my trial drug.
Fast forward to the next morning at 8:00am, race time!!!!! We were all soooooo excited to see Corey off at the race, our group gathered at the start line, then again at the 2 mile mark. A part of me wanted to jump into the race! Watching all those racers knowing that they were either off to run 13.1 or 26.2 miles was invigorating!!!
After everyone ran by us at the 2 mile mark, all we could do was wait!
At that point our group which included Ryan, Serena, Corey’s parents, his brother Casey and his wife Deb and their cute new baby boy had a delightful breakfast at a restaurant in town (on a side note, this family is amazing, they have been more than supportive of me and the CF foundation, donating and attending fundraising events, I love them!). ..And you guessed it there was an opportunity for my “fatty meal” to take with my drug! French toast here I comeeee!!!!!!!!!
After breakfast we hustled down to the finish line, Corey told us he should be done around 2:15-2:30 mark..we got there at 2:05 so we “thought” we had time to spare, but we were waaay wrong, our superstar runner had finished in 2:02!!!!!!!!
We were so sad and felt terrible we didn’t get to see him finish!! I was soooooo excited to see him cross that finish line and cheer him on so I was definitely disappointed I didn’t get see that!!! …BUT the good news is he did ABSOLUTELY AMAZING!!!!!!!!!!!!!!!!!!
Watching all those runners come across that finish line with the music blasting and their names getting called out made me look forward to my next race even more, it made me look forward to many races that I know I’ll be running in down the road, it made me look forward to the prospect of running races with the possibility of a kick-ass drug that will help me through those races, it made me look forward to the thought that I could maybe, juuuuuust maybe one day complete my very own half marathon…. 😉

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Day 2…Bad days aren’t so bad…

Day 2 ..5:00am in the morning…just me, the sunrise and the pavement. I can feel the cool breeze upon my face and the wind on my back..as I approach the first hill in my morning run I think to myself about half way up “wow this is easier” and “could the drug ALREADY be working?” aaaaand just as quick as that thought came into my mind it quickly left as I gasped for breath..BAM!.. back to my run, full of heavy breathing and struggling to keep up a good pace…But there I was, 21 minutes later finished with those 2.1 miles..with the sun on my face and the cool breeze surrounding me. A perfect morning for a run, a perfect morning to think about how much easier my runs could become one day with the help of those 9 little pills.

Obviously I wasn’t expecting the medicine to be working yet (if I have the actual drug and not the placebo) but I couldn’t help some wishful thinking!

Too be honest I actually had a pretty rough day, I was extremely congested this morning and had a pretty productive cough throughout the whole morning into the afternoon, on top of that I was exhausted. Now, it’s not out of the ordinary for me to have good days and bad, but today being one of those “bad” days was just a little more disappointing since I just started the trial yesterday.

After work I went to the grocery store wandering around the aisles searching for “decent fatty snacks” to take with the pills. I settled on some yogurt (NOT the light and fit kind) to have in the morning and some walnuts/almonds to have at night. As much as I love cupcakes and cookies, I cannot be having them twice a day for the next 6 months! …or *hopefully* the rest of my life 😉

Fast forward to 9:30pm. Here I sit, writing this entry. Night dose taken, reflecting on my day.

Even though it was one of my “bad” days, no days are ever really a “bad” day. I believe any day where I wake up breathing, where I can lead a normal life is a GOOD day..I may not have as much energy and have to struggle to breathe a little more than most, but then again I sure as hell don’t take one breath for granted.

And to top off this so called “bad” day, I just received a beyond amazing text from an extremely good friend regarding this very blog.

Texts like those are the reason that bad days don’t matter…these are the moments that I forget about all this breathing nonsense..these are the moments that no matter what happens in this study I am reminded I am surrounded by some pretty superb people in my life, because they make these bad days don’t seem that bad at all…

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..ALMOST 12 hours later

9:12pm..It’s been quite the day! I’d be lying if I said I wasn’t a little tired from day 1. Being poked and prodded for 7 hours is a little tiring! …As a side note, I wish I had better veins to get blood from, my arm has some major bruising going on..guess I’ll have to wear a purple dress tomorrow so I’ll be colored coordinated 😉

It’s almost time for my SECOND dose! This time it will be 4 pills instead of 5.

I was specifically told to have a HIGH FAT HIGH CALORIE snack with each dose. Looks like Neapolitan ice cream will be my choice tonight! I’m thinking I’ll have to do some extensive “research” on some fatty snacks to add some variety for me during this trial…I can tell my fiancee may be a little jealous about my new snack schedule!

So far I’m not feeling any change, not that I was expecting to yet, but I’m curious to see how my 5:00am run goes tomorrow morning!

Until then……

Off to the freezer I go!

Goodnight Moon!

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Here we go!

Day One- June 5, 2013… a sunny, bright morning…I want to remember this moment, I want to remember when I took these 5 pink pills for the first time and the research nurses and I did a “collective hurrraaay!!!” that this could be the first day for me and so many others with Cystic Fibrosis to breathe a little easier, and to have even more hope that we will be able to live looooong, (semi) normal lives without the threat of this little monster called “CF” looming over us.

Today is a GOOD day, a bright, sunny, warm June day. With well wishes from facebook to texts..No matter what happens in this study, it is a day of HOPE that we are on the right path to kicking CF’s ass!..Today is a warm, bright, sunny, GREAT June day 🙂

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