I Will Survive

I was moved to floor seven on Monday July 15th and was there for five days.  Although I was better health wise, this was probably the hardest time for me.  I was alert and knew what was going on, but physically I was sore and could not do anything for myself.  I lost any independence that I had and I had to lose my modesty.  I needed help with everything. I knew things would get easier as days went by, so that is what I did.  I went day to day knowing things were already better.  I knew it would be a journey even after I got the lungs. I didn't expect it to be easy.  I got the lungs so there was not much to complain about.

Weak and Confused

This is going to be written in blocks of time, because this is how I remember it.  My mind was a mess through this whole time and I only remember things in chunks.  I will do my best to explain myself to everyone and hopefully you will all be able to follow along.  If not please feel free to ask me anything.

A Second Chance

For me, waiting for the lungs was the excruciating part.  I was completely lost when I got the call...sitting on my bed while Jason was running around crazy.  Then when I was on the plane I could not sleep because my mind was in so many places.  I will admit that I was nervous.  I could feel my heart beating (not as hard as when I realized I was getting the call) and I could not settle down.  I wanted these lungs more than anything at the moment, but I was scared too.

Hanging By a Moment

This whole transplantation has been surreal to me.  Part of me can't believe that this has happened.  I know it has, I feel it has, the breathing is amazing but the like I said, it doesn't feel real.  This is something that we have been talking about for more than a year now, but I was so use to not being able to breathe that part of me didn't know if it would ever chance.

Pittsburgh Evaluation

Last week I spent four days in Pittsburgh, PA for a lung transplant evaluation.  As most of you know, New York wanted me to be double listed because after a year of being on the list, I still have not gotten a call.  My doctor wants to increase my chances of getting lungs sooner so she made this suggestion to me.  NY Presbyterian sent a referral along with some files to University of Pittsburgh Medical Center (UPMC).  After collecting all my medical information and getting insurance approval, I was given an itinerary to come to Pittsburgh.

Deterioration of the Fight or Flight Response

I failed at being able to tolerate the NG tube.  It was my first try though and I am not going to give up on it completely.  I am going to try again tonight to see if I can get it down all the way and tolerate it.  This is a snapshot of one of the attempts.  Here is what happened.

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....