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....

Double Shot

The hospital stay went smoothly and I was able to come home last Friday.  I am so grateful I am able to do that because after a little while in there I am ready to get out.  If it wasn't for some of the respiratory therapists, the procedures that go along with them and the food, I wouldn't mind being there as much.  Even if everything was perfect in the hospital, it is still nice to be home.  I am able to sleep in my own bed and be able to actually do things.  I would do the whole thing at home except that first week I really am too sick to do it all by myself.  It is better to let my nurses set everything up with the port and allow them to nurse me back to health those first few days. 

Candles on the Cake

Today is my 27th birthday.  I am still in the hospital, but to everyone's surprise not too upset about it.  It is not where you are, but the people you are with and today many people have made this day special for me....

Thank You for Being a Friend

I am back in the hospital for an exacerbation.  I made it a little longer than last time and this month was a good month.  My coughing has gotten rougher.  I have a lot of unexpected coughing fits that bring me to the verge of passing out, but I am learning to get through those.  I can't complain about this because I had some energy to go out and do things with people the last few weeks.  I did not have this luxury the previous month and it was horrible.  My friends and family have been coming over and taking me out a lot, even if it's for a little while.  It isn't always easy or go smoothly, but I am grateful they all put up with it for me.  And when I am too tired and can't go out they just come over and we have a good time here.

Stronger

I am home, off the IV's and feeling OK for the time being.  There are a few things to catch everyone up on including my hospital stay and my appointment in NYC.