My Moments to Breathe

Wednesday, April 3, 2013


I am such a grump...plain and simple...a grump.

Todays Itinerary:

9:30 Single View Chest Xray
10:00 Panorex
10:45 Chest CT
11:1 Maxiface CT
11:45 Infectious Disease Clinic
12:45 Manometry and PH Impedance
3:30 Surgeon/Consents

So the first four are no big deal, they are all xray and CTs. Panorex is an xray of my teeth and the maxiface is more of my sinuses. This is all things I can do and I know I don't have to worry about. I got this :)

Infectious disease went well. It was just talking about post transplant things that I can and can not do in order to prevent getting more infections and therefore rejection. No animals. No yard work. New vacuum with a different filter...either that or I can't be home for an hour after Jeremy vacuums (or both would be best.) Wear a mask so people avoid you. When Laila is sick stay 6 feet away from her and if you HAVE to go close wear a mask then wash wash wash. Just a ton of rules to follow. But he did tell me I should see my ENT to make sure there was nothing starting up there and most likely have to have sinus surgery before transplant. SIGH...wonderful. I also have to get 4 plus immunizations to make sure I can stay as healthy as possible. Just some hoops I was warned about.

Now to the Manometry: YUCK. So I had a tube (and I not kid about this) the size of a cord for your computer was put up my nose and down my throat and into my stomach in order to measure how well my esophagus is working. So I thought I could do this if I just put my mind to it. HAHA well, I gagged and gagged and gagged and my eyes watered, i almost threw up and my throat killed. But after about 20 minutes it was in place and the test could start. PHEW I did the test and the tube was removed...and I guess my esophagus is weak. SAD. I told Jeremy that was one of the worst things I've had to do. I felt like a baby.

PH Impedance was next which is pretty much the same thing. A tube the width of like a coffee stir straw was placed up my nose and down my throat. Luckily the tube is smaller because this one has to stay in for 24 hours (see the lovely picture above of grumpy me.) It is hanging out of my nose and plugged into a little machine that I have to carry around and use as a diary of when I lay down, eat, stop eating, what I eat, when I burp, cough, clear my throat, take pills, drink. So again I say...I'm grumpy. I am counting the hours until noon tomorrow when I can pull it myself. And trust me it will be noon exactly. This is very uncomfortable and there is no way around it. YUCK. GRUMPY. 

The good news is that the last one got cancelled so I could leave after this appointment and go eat and relax in my hotel room. (That appointment is now my last one on Friday!) 

CF can for sure suck it today. Lets find a cure. 

Worst part of the day: The Manometry and the Impedance
Best part of the day: Eating Olive Garden for lunch (even if it was uncomfortable!)  

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