Happy Halloween

While it is Halloween today, it feels like it should be Christmas.  It is doing that weird Chicago thing, you know snow/rain coming down sideways and ice pellets hitting you in the face as you walk down the street.  How lovely?

Last night I finished my last IV and then deaccessed myself.  Taking out the needle in my chest from the port-a-cath was the greatest feeling.  The port is the best thing I have decided to get because it makes having to do IV's so much easier but having a needle in your chest for 2 weeks at a time can get irritating.  The tagaderm, or special tape to cover the needle and keep it clean gets itchy too.  Anyway, I am needle free!!! (Until next time)
The IV's helped a little but not as much as they used to.  I was still coughing blood last night and had chest pain.  Something I guess I just have to get used to.  Most people keep a bottle of water at their bedside at night, I have a bottle of water and an empty bottle that I cough my blood into.  Hah really attractive right?
As I am starting to come around to the idea of a transplant I can't quite grasp it.  I cry.  For one thing, the emotional rollarcoaster of being on the transplant list is daunting to me.  Then the actual transplant scares the bejesus out of me.  The thought of my family watching me lifeless on a bed as a vent breathes for me makes me cry even more.  I watched my dad on a vent after his second open heart surgery and it looked so fake.  He looked like a dummy lying there, and every 30 seconds or so the vent would breathe for him and his chest would rise then go back down.  I couldn't handle watching that and I don't want my family to see me like that.  You are so lifeless and helpless at that point, hooked up to so many machines, IVs, tubes and who knows what else.  Also, selfishly I am so afraid of waking up on the vent and gaging on the tube.  I am also so scared to have chest tubes.  They are HUGE!  Then there is the surgery itself, there are so many things that can go wrong.  It is so overwhelming.  I know it should be a simple answer, do you want a transplant to extend your life and live longer?  But there is so much that worries me, that the answer is not as clear cut as it should be.
If I make it through and everything is successful then the following years there will be fear of rejection.  If my body rejects the new lungs, again I will be faced with the decision to go on the list again and have another transplant to save my life or just accept the fact that this is it.

Switching gears here:  In honor of Halloween, I am dressing up as my favorite- Winnie the Pooh!!  I am so excited!!
I have yet to try on my costume but I am positive it will be amazing.
The little things like dressing up for Halloween and meeting friends for dinner make me appreciate being out of the hospital and my health as it is.  I am fortunate enough to be able to still do these things.

Happy Halloween!! Looking forward to lots of candy and dressing up!