I'M OFFICIAL!!!

Well its official...I can finally say it...."I'm on the lung transplant list!!!" So very happy and grateful this ordeal of just being listed is over-for now. I say for now, because it can always change with the wind.
Wednesday, my cousin Jenn headed south to stay the night with me only to wake up the next morning and drive another 2 hours south to Tampa. Poor girl had to see a lot! She watched as a tube that was like 2 1/2 spaghetti noodles around was inserted into my nose and down my esophagus, then slowly pulled out as I sipped water. Seems clean enough, right? WRONG! I was drooling and my nose was running and I was crying...I was truly a baby! But my goodness it hurt!!! It would hit my gag areas and as soon as I thought I was settled and it was okay, they'd move it again! Not fun! Then, they took an even smaller tube and put it down my nose and down the back of my throat. This was supposed to stay in place for 24 hours to monitor what happens with the esophagus when I cough, eat, burp...etc. Well I was told to eat only hot stuff and that would make the tube more comfortable. Within two hours I was puking and unable to breathe! I felt like I couldn't get enough air in, and I had no idea how I was going to sleep with it in either. After losing lunch all over Panera (who wasn't very good sports about it and tossed our food before we were done) I had to take the tube out and throw the towel in. I tried. I really did, but it was way to scary not being able to catch my breath, gag, and cough...too much! So we had waited around to see if TGH would be able to see me then, to sign the magical papers- but no, I had to head home.
So last night, after being allowed my savior-Prilosec...and Tramadol, I had gotten some extra energy and cleaned the house. I love that my husband and everyone else tries to keep my house straight when I can't-but the house was missing my OCD touch! LOL So it wasn't until about 10pm I finally crashed and got ready for today.
Now today had a weird start. I was very, very cranky the whole morning, and the whole way there. I have no clue why. It could have been nerves that I wasn't acknowledging. When we finally got in and saw the first receptionist who said "Its a big day for you isn't it", then I got excited! She had me do paperwork, get blood drawn, weight, and PFTs- then I could see the transplant coordinator and the doc. Well, the good news is I haven't lost any more weight-may not be gaining, but I'm certainly not losing. And my PFTs were pretty stable. I had to walk for the doc with a oxygen saturation monitor on (and myself and the RN think the SAT monitor was broken), only to find he wants me on 4 Liters if I'm moving around. Ok, no biggie. Plus, he said it would add points to my ALOC score (I'll get back to the meaning of that when I get the papers out of the car). But this number is basically on a scale of 1-100 and 100 is the worst health, they would not do a transplant then. and at 1, you probably wouldn't be listed. I was 37 =) (For those who know me, notice no 9's!!) He is trying to add a point or so I think by upping the O2. I have about a 6-12 month wait now. Any day or time I can get the call to start my new life....I can go back to the old me, but new and improved! How exciting! I have so much more to ramble about, so I'm thinking I'll have another blog come Sunday. Happy Mother's Day!! I hope all the Mom's out there get the love they give....I know my Mom and Mother-in-law are pretty super, so I hope to give them a great day. Tonight, I'm going to breathe a little easier knowing that any moment I will being breathing freely!!! LOTS OF LOVE TO ALL OF YOU!!!! XOXO