Thursday, May 20, 2010

Yesterdays TX appointment

So yesterday was our very long and exhausting day that is my transplant appointment day. My tx center is roughly 3 1/2-4hrs away so depending on when my appt is and if I have test that day we either drive up the night before or we just get up super early and drive in the morning and then drive home when we are done.

Yesterday, my appt time was at 11:30 and I no test scheduled so it was "supposed" to be and easy day. We left my house at 7:00am got breakfast then got on the road arriving in Gainesville a little ahead schedule. We go up in the elevator to the 3rd floor and walk into a waiting room FULL of people. Right there we had a bad feeling it was going to be a LONG day. With my tx center you are either in and out or you wait HOURS...its never in between!

So I sit down they call me back to do my vitals and then I went back to sit with my mom. Surprisingly enough we got called back rather quickly and put in a room. Within 10 minutes the tx coordinator came in and asked if I could do a six minute walk and PFT because if I didn't I would have had to come back in 3 weeks instead of 3 months because your test have to be updated in the system every 6 months or it automatically makes your score a 0 and since we can't have that I needless to say did the test even though I wasn't to thrilled about it.

So I did my six minute walk and did fine but when I did my PFT and I looked at my numbers after each time trying I knew I was a couple of points down from the last time I was there. Which isn't to big of deal because I have been in the same range of numbers for the past 2 goes up a couple and down a couple but basically its been the same.

After all my test were done we went back into a room to wait for the Dr. So the short version of this story is when he came in he looked at my test scores and was like well we need to get you transplanted...and im like well DUH I have been waiting 2 years!! He then had me stand up to see how tall I was (5'4" btw) to see if maybe he could bump up my height which will open up then window a bit of what lungs I can receive.

I know I have said this before on my blog but I have never in my whole 2 years going to Shands knew what my LAS was because I was told back when we started this process that they don't tell you so don't even ask and I think it was Sara who told no Jen you absolutely can know! So yesterday I asked if I could know what my score was and surprisingly he said sure and called the coordinator in right there to look it up. She opened my file and found out that I was at a 37.9. The Dr then questioned why my score was so low and right there in front of us they went into the computer and updated my name and bumped my score up to 41!! So hopefully with that bump in my score I will get some kind of action and actually get my call! How exciting would that be??!!

Once we were all done with the appt we got in the car and headed home. It felt like it took FOREVER but we pulled in the drive-way around 7:oopm and I was exhausted! I didn't even want to cook dinner last night I just wanted to go to bed and watch American Idol and General Hospital. LOL

Overall it was a good day...I don't have to go back till August but who knows maybe I will be there sooner! Keep thinking positive thoughts for me. I know there are a lot of people out there waiting right now but I am ready!! :)


OceanDesert said...

My tx clinic is sooo similar! Sometimes I'm in and out in a couple hours and other times I'm there 4-5 hrs!.. Hit or miss kind of thing...

Sooo happy you asked about your LAS! I feel like sometimes they 'forget' how long people are waiting and when you question it, it MAKES them look it up, see how long you've been waiting, look at other factors like you said about adjusting the height, etc. And glad they bumped your # up! Remember, you can always know WHATEVER you want about your records!.. except who your lungs came from ;)

Sending thoughts your way of the next time you return home from clinic, it will be w/ NEW LUNGS!

xoxo Sara

CFsteph said...

I hope that bump in the score does it for you. New lungs are great even though they do come with their own problems. But I would not change it for the world. Good Luck! By the way, I am 9 weeks out of my transplant.