What a Difference a Day Makes

CF Awareness Month is coming to an end.  Thank you to everyone who walked and donated to the CF walk.  And thank you to those who changed their profile pictures to spread the word.  It is all appreciated.  :)  I have wanted to write an update, but I was hoping to get my itinerary from Pittsburgh before I did.  Sadly that still has not happened.  I called earlier this week and found out that they were missing some medical files they needed before they could make all the appointments.  I really wish they would have called me to let me know what the holdup was.  So sorry to say there is no news to report on that front, but there has been other things going on....

I am back in hospital.  I came back in on Monday, (Memorial Day).  I had it pre-planned because I needed to get in and out before we go to Pittsburgh.  Although it was planned it turned out I really needed it.  The second week of May is when I started getting fevers again.  This resulted in me missing Mother's Day.  I wasn't feeling well enough to be able to go down and visit family.  I wanted to, but didn't have it in me.  I was exhausted and felt more comfortable staying with my oxygen in case I needed to increase.  Later that week I was miserable.  I called the Lung Center on Wednesday for some antibiotics and they gave me Cippro.  That Thursday and Friday, (16th and 17th) were really bad while waiting for the drugs to kick in. My friend Kelly was with me because Jason had to go to Florida for work.  It didn't take much to set me into a coughing fit and breathing was a chore.  It took everything I had just to breathe in and out.  It hurt so bad and felt near impossible.

To try and explain it:  breathing in was limited.  It was like something was wrapped all the way around my chest cavity and I was unable to expand it.  I could inhale a little bit and then it was like my chest hit a brick wall and would not expand anymore.  Breathing out was just as difficult.  I would try and push the little air I had out and I would really have to push. It is kind of like having a really thick blanket over my mouth and trying to push the air through it.  At times like that I wish breathing were optional because it is easier to not breathe.  That is until I get that ache that comes where you have to take a breath.  It doesn't take very long at all for me, less than five seconds.  I remember when I could hold my breath under water for over a minute.  Anyway, it was a rough couple days for the both of us.

By Sunday the 19th I was feeling better and able to go down and visit family.  I hung out with my gram for the morning.  I showed up at her house in pajamas and she helped me wash my hair and get ready.  Although I was feeling better, I didn't have much in me.  Later we went for a walk with Kelly, her two dogs, Gidget and Gilligan and my mom's dog Casper.  My gram pushed me in the wheelchair while Kelly walked the three dogs.  At one point during the walk I had a coughing fit. Gilligan (black lab) came running over to me to see what he could do to help me out.  It was adorable.  I love animals!  We went to go visit two of my great grandma's (one on my mom's side the other on my dad's) and then we met up with my mom.  From there we went for ice cream.  During ice cream Kelly told me I looked a lot better than when she had seen me on Saturday.  I didn't realize I looked that different when I am feeling good and when I am not.  We then went to my mom's and jut relaxed.  After that Jason and I went to his family's house for some dinner and then we went home.  It was so nice to be able to get out and visit with people.

Although the Cippro helped me feel better, it was short lived.  I called Thursday to verify coming in on Monday.  They said it was a holiday and Tuesday would be better, but to come in if I needed to.  By Friday night I wished I had gone in that day. It was back to being miserable.  I was on 10 liters of O2 and it was not getting easier to breathe.  Luckily I was only feeling real bad in the evenings.  I was able to do a few things to settle it down enough to sleep for the night.  Although I was sleeping alright, when I woke up Monday morning I decided that I didn't want to wait another day.  The weekend was rough and I had no idea how I was going to feel later on that night so I called V10 and now I am here.

I slept all day Tuesday.  I woke up did what I needed to and went right back to sleep.  I wasn't awake until 6:00pm.  The only reason I woke up was because I had to do my vest again and eat dinner.  I was going to go back to sleep right after eating, but after I ate I was more awake and decided to stay awake.  Yesterday was better and I was up most of the day, but still tired.  Today I am noticing a difference and feeling better.
In a couple hours I am going to try something new.  I asked my doctors about an NG tube.  It is a feeding tube that goes down the nose.  I don't NEED it, but I want to give it a try and see if I can get some extra calories at night.  I need to gain weight and maybe I can a little with this thing while I am here.  My weight is border line for surgery.  I just want a little cushion for when I am sick and don't feel like eating.  We will see how that goes tonight.  I will blog about that later tonight or tomorrow morning to let you all know.  Wish me luck!