Hey Y'all.
It's been a super long day. I had to get up at 6 a.m. in order to leave by 7 a.m. to get to the hospital in Chapel Hill and meet Victoria for breakfast at 9 a.m. My brother took the day off work to take me. Breakfast was good. It was great to see her. It was the first time I'd seen her since Garran got his transplant. I brought his presents and some clothes out of my closet for Kait. She said they loved them. So that's good.
Then after we got done eating at 10 a.m. I had to go straight to registration. Then to get my blood drawn. Then after that I was due in clinic by 11 a.m. We got up to clinic right on time. First thing I did was the pulmonary function test. (P.F.T.) Unfortunately, my FEV1 (Forced Expiatory Volume over 1 second) percentage dropped by 3 points. It went from 21% to 18%. I had hoped that this meant my L.A.S. (Lung Allocation Score - what decides your place on the transplant list) would go up a significant amount and therefore put me higher on the overall list (which would make me more likely to get my transplant sooner than later). But, I was told that the L.A.S. isn't affected by the FEV1, but by the FVC. (Forced Vital Capacity). And although my FEV1 dropped by 3%, my FVC didn't drop all that much. SO Ken, my coordinator, told me that my L.A.S. would increase, but not by much. So that' sucks big fat hairy donkey balls. :-(
And to make matters worse, I've gained even more weight. Last time I was at clinic, I weighed 113 lbs. This time I weighed 118 lbs. But, in my defense, I was wearing heavy shoes so I have to subtract at least 3 lbs. So I'll say 116, which is what I weighed at the last Dr. visit I had here in Lexington. But still. That is 3 lbs more than I was the last time I was in clinic.
I felt sort of depressed today during Clinic, b/c I saw like 3 other people that were POST transplant. And it is really starting to bum me out some b/c I feel like I'm the only one left on the list at Chapel Hill. And then I felt even worse about it b/c the guy running the PFT test for me told me , "Your the only one I've had today that wasn't post transplant." and i was like, "Really? How many people have you seen today?" (at this point it was only 11 a.m.) and he replied, "you're the 10th." I felt like I'd been slapped in the face. Jeeeezz that's just great. Thanks buddy! *rolls eyes*
I did have a funny conversation today with one of the transplant surgeons though. This is how it went:
Surgeon: "So, how've you been feeling?"
Me: "I've been okay I guess."
Bo(my brother): "She's been whining and depressed over Wednesday's game."
Surgeon: "Ohh I see. You wouldn't happen to be a Duke fan would you?" *smiles*
Me: "YES. A hardcore Duke fan."
Surgeon: "Uh oh!" *smiles mischeviously* "You know what that means. During your surgery after we put your new lungs in, I'll have to carve a UNC into your chest!"
Me: "NOOO! Don't do that!" *laughs*
Surgeon: "I'm just kidding..." *laughs*
Bo: "Yeah, Thats what I'm talking about!" *laughs hysterically*
Me: *glares at Bo*
I thought it was pretty funny. I don't know, maybe you just had to be there. Anyways, I'm tired so I'm going to try and go sleepies soon. I'll Holler at y'all later.
It's been a super long day. I had to get up at 6 a.m. in order to leave by 7 a.m. to get to the hospital in Chapel Hill and meet Victoria for breakfast at 9 a.m. My brother took the day off work to take me. Breakfast was good. It was great to see her. It was the first time I'd seen her since Garran got his transplant. I brought his presents and some clothes out of my closet for Kait. She said they loved them. So that's good.
Then after we got done eating at 10 a.m. I had to go straight to registration. Then to get my blood drawn. Then after that I was due in clinic by 11 a.m. We got up to clinic right on time. First thing I did was the pulmonary function test. (P.F.T.) Unfortunately, my FEV1 (Forced Expiatory Volume over 1 second) percentage dropped by 3 points. It went from 21% to 18%. I had hoped that this meant my L.A.S. (Lung Allocation Score - what decides your place on the transplant list) would go up a significant amount and therefore put me higher on the overall list (which would make me more likely to get my transplant sooner than later). But, I was told that the L.A.S. isn't affected by the FEV1, but by the FVC. (Forced Vital Capacity). And although my FEV1 dropped by 3%, my FVC didn't drop all that much. SO Ken, my coordinator, told me that my L.A.S. would increase, but not by much. So that' sucks big fat hairy donkey balls. :-(
And to make matters worse, I've gained even more weight. Last time I was at clinic, I weighed 113 lbs. This time I weighed 118 lbs. But, in my defense, I was wearing heavy shoes so I have to subtract at least 3 lbs. So I'll say 116, which is what I weighed at the last Dr. visit I had here in Lexington. But still. That is 3 lbs more than I was the last time I was in clinic.
I felt sort of depressed today during Clinic, b/c I saw like 3 other people that were POST transplant. And it is really starting to bum me out some b/c I feel like I'm the only one left on the list at Chapel Hill. And then I felt even worse about it b/c the guy running the PFT test for me told me , "Your the only one I've had today that wasn't post transplant." and i was like, "Really? How many people have you seen today?" (at this point it was only 11 a.m.) and he replied, "you're the 10th." I felt like I'd been slapped in the face. Jeeeezz that's just great. Thanks buddy! *rolls eyes*
I did have a funny conversation today with one of the transplant surgeons though. This is how it went:
Surgeon: "So, how've you been feeling?"
Me: "I've been okay I guess."
Bo(my brother): "She's been whining and depressed over Wednesday's game."
Surgeon: "Ohh I see. You wouldn't happen to be a Duke fan would you?" *smiles*
Me: "YES. A hardcore Duke fan."
Surgeon: "Uh oh!" *smiles mischeviously* "You know what that means. During your surgery after we put your new lungs in, I'll have to carve a UNC into your chest!"
Me: "NOOO! Don't do that!" *laughs*
Surgeon: "I'm just kidding..." *laughs*
Bo: "Yeah, Thats what I'm talking about!" *laughs hysterically*
Me: *glares at Bo*
I thought it was pretty funny. I don't know, maybe you just had to be there. Anyways, I'm tired so I'm going to try and go sleepies soon. I'll Holler at y'all later.
3 comments:
LOL.. hopefully they won't do that!!
I know it's tough waiting, but I'm sure you'll get that call soon!!! And what perfect lungs they'll be!!!!!!!!!!
Hugs!!
Yuck, sorry to hear about the drop in FEV1. Isn't it weird how they use FEV1 as the main calculator of how "sick" your lungs are, but then they use FVC as the calculator for your LAS? Such a sucky system.
I keep hoping to read somewhere that both you and Bree have gotten new lungs. For what it's worth you both have a LOT of cystics in your corner ;)
I was so glad you came up to the hospital that day. It was really nice to see you! And great to meet your brother. Hang in there sweetie, it wont be long now. And then I cant wait to see your nice pink smiling face, as you shout and sing and then jump in a big pool and go swimming! HUGS!
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