That's It I'm DONE!

Colistin has finally beaten me. I've tried every single trick I know on how to deal with the inflammation and these awful side effects. Last night was the final straw for me.

I noticed at work that I was feeling REALLY short of breath and overall like I'd been hit by a truck. So when I got home I did my FEV1 monitor and realized, my #'s had dropped about 15%!!!!! No wonder I was having a difficult time :( I took it upon myself to stop it (don't worry Hopkins will be made aware). I just can't keep doing this every other month and hurting my brain trying to work something out.

I think part of the problem is that I'm so used to being on an inhaled antibiotic ALL THE TIME that I think I need it. Maybe not. I'm so open to trying new things, so that's what I'm going to do now.

For the next 2-3 weeks that I should have been on Colistin I'm going to see if it's ok to do this:
Hypertonic saline 2x/day
Pulmozyme 2x/day (if appropriate)
Hit the gym like usual so no gunk can settle.

I'm hoping my plan works, if not I'm not sure what we'll do since the last time I was on TOBI it was a sudden nightmare of side effects as well. I'm sure there are a lot of CF'ers out there who aren't on something every single month. I need to see experiment because for now it's Colistin-1, Jess-0.

30 Minutes of Hell = :)

The sinus drainage reared it's ugly head again this morning. I could not only feel it in my head, but in my chest too, and it wasn't pretty. I checked my #'s with my FEV1 meter and wasn't thrilled to say the least. I was able to sleep without interruption and needing cough medicine last night which was so nice. Today, first thing, I loaded up on my Atrovent spray. That stuff is like a miracle for my sinuses. It stopped the drainage and let me get my workout in at lunch time...

Today at the gym it was a tough work out for sure because I felt so tight in my chest already. I decided to do the Elliptical for a full 30 minutes on a higher resistance than normal. It was killer! I was sweating SO much, and then began coughing my head off. Don't get me wrong, this is totally a good thing! :) By the time I was finished I was completely soaked and looked like I had just gotten out of the shower. Yowza!

After that workout my #'s improved drastically, and my sinuses seem much happier as am I ;)

For Me, Exercise is proof.

For those of you who follow this blog, it's no surprise that I have a hard time on Colistin months. Though every other month I do my best and just, well, deal with it. I weigh the pro's and cons and it boils down to this....Fighting of PA vs. chest tightness, hence the "dealing" part.

On top of Colistin this time of year, be it my favorite, is awful for me health wise. Fall allergies are my enemy though I don't like to admit it. Every night for the past week, I've been woken up by horendous sinus drainage, coughing, etc. I should take stock in nasal spray, zicam, and lozenges this time of year. But it's the whole mind set of doing whatever it takes to get through something.

This morning I woke up all kinds of junky in my chest, sinus drainage, you name it, it was happening. I blew into my FEV1 monitor and was NOT happy at all. Although, it would have been more of a shock if I'd have felt "normal." Luckily, I did not. On Colistin my #'s go down because of the bronchospasms, but this was worse.

We had planned a big hike today, and I knew that exercise would be the BEST thing for me and to make my lungs feel better. After about 3 or 4 hours out on the trails and a total of a mostly uphill hike of 5 miles, my lungs got the workout that they NEEDED so badly.

I worked those lungs hard today, and am happy to say that when I got home and blew into the FEV1 monitor, my #'s were up by about 1/4. For me, exercise was my proof today on how important and imperative it is for my precious little wind bags :)

Giving Colistin another try...

This morning I got up early and decided that yes I may be off work today, but I can't take a break from running. Instead of going to the gym I ran around my neighborhood. It was the perfect weather for it too, cool crispy fall-like in the low 70's, ahhhh. I did 2 miles in 28 minutes. I have to say I really feel a difference when running outside. I suppose it's all the hills that I don't have on the treadmill. I'm excited since I only have 5 more days until my 5K!

I'm giving Colistin another go. It has caused me some bronchospasms in the past, but I decided to see how I did this month. So far so good I must say. I think I have to realize that It does make my lungs tighter, but it's killing the bugs. My FEV1 meter shows a decline when I'm on it, but in the big picture the PA is having it's butt kicked so I should be happy. It's VERY easy for me to obsess over that little monitor. Heck if It's not preventing me from running It can't be that bad right? ;)

Moving on Up

Poor Scott was plagued by a horrible cold/virus on Friday. It was so bad that we actually had to pass on going to the Ravens game Saturday night. Ahem, to miss a football is a big deal you ask?! Oh yes it is in this house!! Poor guy had fevers, congestion, you name it, he had it. The whole weekend was spent resting and fighting this infection. Me, I spent it avoiding Scott like the plague unfortunately.

So far so good (Knock on wood!) I went to the gym today after taking a few days off last week due to my bowel obstruction I had last Monday. My body needed some rest, plus I'm not sure the pain I felt would've even let me attempt to run. Anyway feeling great and moving on.... I had a hard run and loved every bit of the 30 minutes it lasted. I realized today that my 5K is only 2 weeks away!!!

Today's Totals:

Ran 30 minutes

Total 2.1 miles

Pulse 165 max

Weight training: bicep routines

My FEV1 monitor is showing numbers that I REALLY like too! I gave Colistin another 'whirl' after stopping due to some side effects. I have to say, so far so great! Here's to more running, feeling good, and positive things this week!

CF Clinic Visit

Yesterday was my 3 month appointment @ Hopkins and I'm happy to say it went very well. I'm doing a study currently at Hopkins on how I balance CF treatments with everyday life. I met with the counselor for the first time, then it was off to PFT's.

I'm not sure the exact reason of this but I really really loathe doing PFT's. It's just one of those things, that If I let it, I'd have a full blown anxiety attack. Ugh. Yesterday I thought long and hard about why it bothers me so much. Besides the obvious fears, I think it's because maybe it's like going in for an exam and having test anxiety? Not sure how many other of my CF'ers out there feel the same way....I'm happy to report that my PFT's were up 5% from last time, and I am THRILLED!!! I've been running at the gym 2 miles or more, 4 times a week. It's nice to see my running paying of and looking at that paper and seeing an increase.

My clinic visit was by far a record for the fastest visit I've ever had! My poor doctor was so slammed, when he saw me he jumped right over to see me. It went something like this.

Doc: How are you feeling Jess?
Me: Great!
Doc: How do you like Cayston?
Me: I love it so much for so many reasons.
Doc: How were your PFT's (shows him paper)
Me: UPPPPPPP!
Doc: Great! Anything going on?
Me: Nope, just allergies.
Doc: Exercising?
Me: Yes sir @ the gym 4 days a week running several miles.
Doc: Ok great, keep up the great work and we'll see you in 3 months.
Me: Woo Hoo, later gator ;)

Despite sitting in traffic and it taking me 2 hours to get home ( I live 30 minutes away from Baltimore/Hopkins) It was a GREAT visit! Note to self...Never schedule a clinic visit in the summer when the Orioles are having a home game. Makes for some crazy city traffic ;)

Overall very happy!

Pseudomonas is a B*tch

It's been quite the fiasco recently with this infection and I think I've nailed it. I've been having these exacerbations back to back for a few months now. Each time I'm put on Prednisone (with out an antibiotic), opens up my airways, wean off the Prednisone, and we're back at square one.

It's been driving me absolutely insane I have to admit. I'm not one to let myself getted bogged down with health stuff and be all negative, but I wanted answers. So I sat down and thought to myself, what the heck have I done differently in the last several years? Because certainly something has changed. Let's face it, yes I know with CF there may come a time when these exacerbations will hit and I won't have an answer, but I'm not there and I KNOW it.

So after many hours on and off I think I got it figured out! I basically stopped TOBI recently! Bam, that's it! I should've known better since I've actually been able to taste the infection/Pseudomonas. Since TOBI is only every other month, there's 2 months out of this period without TOBI or anything to fight off the lovely Psuedomanas. (Colisitin was the alternate on the other months, but it inflames my airways) Then when I was my TOBI month I weaned way back because I was completely losing my voice. I went to 1x every other day. Dumb move, because clearly nothing has been in there effectively for 3 months time. My lungs have been a playground for the PA to enjoy. Not cool.

So I called Hopkins told them all this and they agreed which felt great. So I'm back on TOBI whether I lose my voice or not again, I don't care. This was a tough lesson to learn, but I'd rather lose my voice then my mind again.

I'm also happy to say that my FEV1 is back up beyond baseline!! *Jumps for joy!*

Bye Bye Wheeze

The wheezing has gone away, hooray! My FEV1 is back at baseline according to my trusty little monitor. So glad I have "him" so I can track and compare symptoms to actual evidence. I guess it was just the dust and work from the front door installation. However today at work I suddenly felt sick to my stomach. Sort of like a little stomach bug or something? Nothing ever happened though, thankfully. I did leave work early and came home for a few hours to sleep. I woke up feeling 100% better.

I had to go to a viewing this evening for a dear friend of mine who's Grandfather passed away. Very sad, and I just hate the feeling of being helpless when you see others hurting so badly. I wasn't able to make it to the gym today as I'd hoped since I was feeling crummy. However tomorrow is a new day, and I hope it's a great one :)

Wheezy

And not as in the Jefferson's George and Weezy ha ha. We ripped out and installed a new front door yesterday. Thank goodness for a handy husband :) However all the work, of ripping out, cutting, drilling, and re-installing left me feeling super wheezy last night and today. I did wear a mask yesterday, trying to avoid this, however obviously it wasn't all the way effective.

My FEV1 monitor proved to me that I wasn't wrong either. My numbers weren't bad, but definitely reflective upon an asthmatic flare up. So I took my Fish oil, Ibuprofen, Fizzy NAC, Albuterol Nebs, and have rested all day long. It's actually been fantastic to do nothing all day but watch football.

I hope all of the dust from the project has settled now, and my lungs can be happy again :) Although I just did my FEV1 meter to check my progress, and things are looking up! Awesome!

Do Or Do Not..There Is No Try!

Well I know this quote is popular, and by no means new, but I LOVE IT!!! I went to the gym today, and to my surprise my beloved treadmill (and all others) were being used. I guess there are a lot more people there now since the New Year. Anyway so I decided to do the bike today as my entire workout. Whoa momma I am SORE, but I love it. I rode the bike today for 25 insanely tough and sweaty minutes, totaling 4.1 miles. I went through a virtual mountain course and I really felt like I was on a mountain, wow.

So as I'm biking there are little motivational quotes that were scrolling on the screen. And right when I thought I literally couldn't move another muscle...."DO OR DO NOT THERE IS NO TRY" scrolls past me in bright yellow letters. It may have well said "Jess did you read that!?" So I followed my quotes advice and pushed it to the limit! I'm happy to say that I did not stop pedaling that bike for the entire 25 mintues, and there are parts of me that are sore that I didn't know existed :P

So in honor of this quote, I'd like to say Thank you!!

P.S.- My FEV1 monitor gave me a surprise reading today, 2.42!! :)

Week's End Mileage

Well I am happy to report for one that it's Friday, and two that I had a great workout week. I went all 4 days as scheduled (goal) and loved it. Each day at the gym is at least 30 minutes of cardio. Here are my totals:

Monday: 2.21 miles
Tuesday: 2.30 miles
Thursday: 3 miles
Friday: 2.5 miles

Totaling: 10.01 miles

New FEV1 reading today of: 2.39!!!

Have a Great Weekend!!

Monitor Says What!?

Well I remembered to take my FEV1 monitor to the gym today. Hooray for my brain working at 440 in the morning! I was VERY EXCITED over my numbers today. I took my "Fizzy NAC" at about 9:30 am, and went to the gym around 12:30 on my lunch break. After a total of 3 miles in 30 minutes....*Drum Roll Please*....

I blew a 2.27!!!!!!!!!! Here's the reason why the excitement with this number. When I had pnemonia back in October and was on IV's for 2 weeks I blew a 2.21 on the day my PICC came out. So with a combination of going to the Gym 4 days a week, and starting my Fizzy NAC this week, I blew even higher than when on IV's! Let's keep this UP!

I can't believe it!!!!!!!!!!! :)

RUN! You Won't Regret It!!

Feel the burn!!! And oh believe me I do! I thought I Ran hard yesterday? Well today I kicked it up a notch, and not even intentionally which is cool. I would sprint for 2 minutes, then jog for 2 minutes. I did a total of 28 minutes, then a 2 minute cool down. I again shaved 1:30 off of my mile, and the grand total of mileage today is 2.30 miles. Woo!

I've also started to take "N- acetylcysteine" aka "Fizzy NAC." I learned that alot of my fellow Cysters and Fibros were taking it. So I did my research and gave it a whirl. Can I just say that I LOVE IT!!!! I honestly feel a positive difference and think it's amazing. I do remember doing Mucomyst as a kid sometimes, which is basically what NAC is. I'm just not sure why it's never been brought up before by the docs to use as an adult?

I keep forgetting to take my FEV1 monitor to the gym with me to track my PFT's. At any rate, when I did the monitor on Saturday in the midst of a non exercising 2 weeks, I had great numbers. So I'll have to remember to take it with me so I can track the NAC and exercising benefits :)

RUN!! You won't regret it!

First Day at The Gym!

Well I joined the Gym and today was the official first day. I worked almost 10 hours so was pretty tired, but knew how great I'd feel once I stepped in the door. Right I was. I LOVED IT!!!!!!!! I did about 45 minutes today and to be honest It completely flew by (bonus!).

I started off on a really cook bike that felt more like a video game. I did a 10 minute course through the "woods" and boy did it feel real. When I got off the machine I had a flash back to how sore my legs felt when I played Volleyball in highschool. Whoa I'm going to feel that tomorrow ;)

I then went to the Treadmill which was my favorite part by far. I started off with a slow jog then realized I had to move quickly because I could. Guess all my running has really payed off. I decided to limit myself to about 10 minutes on the treadmill because I wanted to check out all the equipment. Well I looked down, I'd already run 13 minutes and well over a mile. I was so excited because I felt like I could have just kept going, going, and going some more. I made myself stop, how awesome is that!?

I cooled down with some weight training. I did a bicep machine, then a tricep machine, and finished up with some crunches. Feel burn? Oh yes I did!

I walked out of the gym after about 45 minutes and felt on top of the world. According to my FEV monitor my pre and post lung function increased by about .30!

So to sum it up I freaking loved the gym today and feel great! My 1 year of running has definitely made me see and feel a difference. It's nice now to have a ton of equipment at my hands to mix up my routine and make me push HARDER!

So what's the plan for tomorrow? THE GYM!!!!!!!!!!!!!!!!!!!!!!! :)

Official Gym Member

That right, as of today I am officially a member of World Gym :) Yay. It's right by where I work, and as Nursing employees, we got a great discount of $20 a month! (Granted the people I joined with are the same people who fell off the running wagon with me, but it never stopped me, I'm staying positive!) That includes all classes, everything. Woo Hoo! I couldn't be happier for several reasons.

1. I'm afraid that running outside may do more harm than good, especially when it gets to be freezing here and snowing.

2. I can now run inside in the heat :)

3. I've always wanted to do a Spinning class and/or cardio kickboxing, and now I can.

4. Instead of just doing the Eliptical I have EVERYTHING! :)

5. It's literally steps from work, so off with the scrubs, on with the gym clothes, work out, then home. How easy and convenient is that!?

6. As we all know exercise has huge benefits for CF!

So excited!!! I want to keep this FEV1 on the increase, and I'm GOING TO DO IT!

Halloween @ Work

Today at work we had our Halloween party. Lot's of fun as always, and our patients love that we dress up too. Everyone brings in a yummy dish they made and it just makes for a fun work day. (Always a good thing). This years costume couldn't have been more convenient I must say. Deciding to be a referee was also the perfect way to have a lovely "R" on my arm which also acted as a subtle PICC cover ;) Good times!

Still feeling better each day, and my lungs are very happy. Today's FEV1 meter reading....2.02! NEW RECORD on the meter!!!!

Now off to watch The Great Pumpkin :)

Up Up and Away

I bought a home FEV1 monitor several months ago. I try not to obsess over the numbers, but sometimes I do just that. So over the course of the year I've seen a huge improvement! That along with my continuous efforts to run several times a week. So after work today I blew into the monitor and got the HIGHEST number I've EVER gotten!!!! I thought I was going to burst I was so excited!!!

When I got home I did my Monday run, and felt great! I was able to do 2 miles in 24:03. The coworkers said they wanted to start back running today with me after work. Did it happen? Unfortunately not, but that's ok, I couldn't be happier for my own progress and FEV1 today!! :) And I need to somehow make sure I save this, so I can show Hopkins at my next clinic visit! Woo!