Saturday, February 22, 2014

CT Scan

I got a CT scan today because my last round of IVs didn't really improve my PFTs like we had hoped. I still don't feel like I have an infection so we decided to do a little investigating. My last CT was 10 years ago so it seemed an appropriate time to try again. Even though it has been a while since my last CT I remember it being a super simple procedure. I assumed I would be in and out in about 30 minutes so I came without a book or anything to do. Did I mention this CT took place at the hospital? Has anything ever been as simple as in and out at the hospital? Seriously, what was I thinking??

It is a Saturday so for some reason I figure they won't be busy. As I approach the waiting room my suspicions seem to be proving true. The receptionist looks up upon my arrival and quickly shoves her book aside. She apologizes for reading and explains that it has been so dead all day that there really is nothing left to do. All I can think is, awesome I will have this done in no time! So I sit and wait...and wait...and wait. I have no internet in this part of the hospital so I fiddle on my phone and clean out my old contacts (seriously, who are some of these people!?), delete old pics, and change my phone wall paper. I then clean out my purse. Still waiting...I tried to nap, but failed to do so sitting up. I asked the receptionist how much longer she thought the wait would be (I mean it has been dead all day, right?). She went in the back to check and told me they had one patient ahead of me and it would be soon.

(fast forward through a bunch more waiting and the receptionist checking one more time)

They finally call me back and at this point I am annoyed. I waited 50 minutes in a completely empty waiting room! The nurse took me back and was rather rude which made me more annoyed. To make matters worse when I was finally brought back I was horrified that I still wasn't actually getting my CT scan. The nurse pointed to a chair in the hall and said it would be a few minutes. Sigh!

As I am sitting there annoyed that everything at this darn hospital seems to take hours the door to the room opens. And finally, someone is being pushed out of the CT room in a hospital bed. As the nurses push the bed around the door opening I see the body of a very very young unconscious child with no hair on half of her head, no older than my own daughter waiting at home for me. A few tears came to my eyes and I thought how selfish I was for being annoyed that my appointment was pushed back. I realized how lucky I am to have a perfectly healthy and vibrant child running and playing and being silly at home with her daddy. How lucky I am that I am sitting here waiting for a scan for me and not for my little Kay. How lucky I am that my child doesn't know what it means to be sick.

Friday, February 21, 2014

I Would Do Anything

I often think how I would do anything to get back the lung function I had at 14, or 24, or even pre-flu. I would do anything to get an extra 5 years with my daughter. I would do anything to grow old and grey. The other day on my run, jog, walk-jog I realized I had been telling myself a big fat LIE. Yup, all lies!

I was telling myself I would do anything to get my lung function, health, (and youth <--had to put that in there since I am approaching my 30th) back as long as I didn't have to do any work! Seriously, I wanted a magic pill, a miracle, a change without the work.

Yeah, it is true. Because honestly, I am not doing everything I can to be as healthy as I can. Sure, I am 100% compliant with my treatments and meds and have been for years. Sure, I exercise regularly. Sure, I eat super healthy and make sure I get enough sleep. However, if my lung function isn't where I want it to be I need to do more! And you know what? There is more I can be doing. I decided that if I really wanted change then I needed to change the way I lived.

I decided to start exercising more and pushing myself harder during each session. I am now jogging 6 days a week and going on bike rides (with Kay in the trailer) as often as I can. I also try to get up and move as much as possible since sitting still isn't helping my lungs. I started clearing my lungs with my flutter before I start treatments (Vest 30 min and HTS) to give myself a little more clearance. I started using my percussor in order to move mucus plugs that may be stuck in my airways. I started some new supplements to fill in gaps in my health and am eating more to gain weight.

Will all of this work improve my health? I don't know, but I am hopeful I will see or at least feel some improvement. If not, then at least I can say I tried my very hardest and did everything in my power to get as healthy as possible. I never want to look back and wish I had done more to preserve my lungs and my health.

Are you doing everything possible to stay healthy?

Wednesday, February 19, 2014


Chestne...ever heard of it?? You know, it is like acne, but all over your chest. Well, that is apparently what I currently have all over the right side of my chest except that I don't really have chestne. It is a rash that resembles chestne from my port tape reaction from a month ago!! Apparently, skin reactions on your chest take a heck of a lot longer to heal than those on your arm. My blisters are gone and my skin is now smooth, but in their place are tiny red dots, everywhere! I sure am glad it is still winter..except that it is almost 70 degrees outside.

I know, I know, you wish you could be me!

Wednesday, February 12, 2014

20 Months

Dear K, 
Even though you are still closer to 1 1/2 than 2, saying you are 20 months sounds so much closer to 2. You are currently mommy's little helper. 

Thing You LikeYou love to help take responsibility around the house (I am sure I will miss this when you are a teenager!) and do lots of chores with me. You are great at throwing things in the garbage (except the time you threw away a few unused Cayston vials), you love putting your laundry in your basket, washing windows, putting shoes away, unloading the dishwasher (you do silverware), cooking (pouring ingredients and stirring), and following directions. Sometimes I tell you to do things just to watch you follow directions because honestly it is amazing how well you understand everything.

You are finding your voice in your Spanish class, which I love. You are the youngest in a class full of boys many of which are loud and demanding of attention. Oh, but little Kay for the first time since starting classes 9 months ago you answer questions when the teacher asks, you tell the teacher which letter or color you want (always adding "peeees" aka please at the end of your request) and you sing right along with the songs. This class is teaching you language, but I think you are starting to realize that even smart curly haired little girls have a place in this man's world. 

Things You Dislike: You still get frustrated easily. We are working getting you to live a more zen life, but I think that may take some time ;)

What I Like About This Age: I feel like you and I are in such a groove, little girl. We just get each other right now and most of our days are peaceful and happy. Sure, there are those moments, but for this little month in time you are super easy to please, we are having a ton of fun and enjoying each day. I do know by now, that once things get too easy you throw something new my way to mix it up. So I will be waiting to see what this next month brings!

New Words: We still haven't gotten to cinco yet and still stuck saying, "caca"

Monday, February 10, 2014

Running again

I started running again! Okay, by run I mean jogging. Okay, Okay, by jogging I mean walk fast with a jogging motion. I am pretty sure I saw a centipede pass me by, but you get the idea. I am trying and that's what counts, right? After spending a week in the hospital where all I had was an exercise bike (lame exercise for my lungs) and then a week doing IVs, treatments 4x/day and wanting to pass out at 8:00 every night I got out of my running jogging jogging-like routine. It is amazing how quickly your lungs get out of shape when you take a little exercise vacation. In order to get my lungs back into shape I have been jogging(ish) every single day rain or shine (luckily, no snow for us and a cold day is anything under 60 degrees so "rain or shine" isn't really an impressive statement).

Today, my mom came to play with Kaylee for a while so I figured I would do an extra long jog just for good measure. So I did and guess what? When I got home I fell in a heap on my bed. And then I got stuck. Seriously, my body was boycotting life. So as I laid comatose in a pile on my bed I kept thinking of all the wonderful things I could do with my toddler-free time. I had laundry in the drier waiting to be folded and laundry in the wash waiting for the drier. How nice would it be to do laundry without a toddler "helping" take clothes from the dried one sock at a time. I needed a shower and how glorious would it be to shower without a little person frolicking around the bathroom taking a moment every few seconds to point at my naked body in the shower and shout with the excitement only toddlers have, "Cu cO!!!!" (Culo in Spanish and yes, yes, I know this is not the politically correct way to say gluteus maximus and these days you are supposed to teach your children the anatomically correct way to say body parts rather than teaching them some stupid nickname. BUT if you saw the way my daughter made a perfect little "o" with her lips and her the way she squeals, "Cu cO" you would totally teach your kid the same). I really needed to catch up on vacuuming and had some phone calls to make which would be so much easier in the silent absence of a toddler and yet I don't think my pillows ever felt so nice after my super strenuous run-jog-walk so there I laid pretending my home looked Martha Stewertesque, my laundry folded, my body showered, and my secretary was making my calls for me. At least I got my exercise in, right?

Sunday, February 9, 2014

Fundraising for Great Strides

It is almost that time of year again that CFers and those who love them all over the US start preparing and fundraising for The Great Strides. My family and I have been going for years, but the last few years have been lackluster at best. 2 years ago I was heavily pregnant and didn't make it through the whole 5K. The following year my sister was heavily pregnant and to be honest the whole thing snuck up on me and I am not sure I even raised any money. This year I am determined to make up for the last few years. Nobody is pregnant and I am already preparing so it won't sneak up on me again.

I have a little problem though. I love raising money that I know we need so badly for research and as we get closer and closer to more inhaled abx (inhaled levaquin, Amikacin and Vanco, anyone?) and to CFTR modulation therapy (Vertex, anyone?) and anti-inflammatory drugs (Alpha 1 Anti-Trypsin) I feel determined to make sure the money that is needed for these cutting edge drugs is available. However, I have never done any fundraising besides asking (begging?) family and friends for their money. And let's face it, I don't have any billionaire friends to support my cause so my fundraising is always modest at best. I would love to be one of those teams that raises obscene amount of money and give back to my CF community, but I honestly have no idea where to begin. I am not even sure how to go about asking companies or big corporations that have the money to give to little old me.

Anyone have success or advice? Any blog links of people who share their secret or the process? I would love all and any advice because I am willing to put in the work, but i have no idea where to begin.