everything in a nutshell

well the dr didnt go too terribly bad today. i mean there wasn't anything devastating that happened...i guess it was stuff we already knew and stuff we knew was coming...well let me just tell you what happened.


+ to begin, according to their scales i had lost a pound! so i was shocked at that. however, dr s said if my scale at home said i had gained weight thats what really mattered. but im still welll below what my BMI needs to be so i need to gain weight, like now.
+ i did have to do PFTs. it was a lot harder than i thought it would be. i haven't done them in so long. and they were really really low. so low when i asked the RT what i was last time she looked it up and wouldn't even tell me- she just said "well higher than this". i think she was afraid it would upset me.
+ we got back to the room and dr s walks in and i was terrified. i just knew she was going to want to admit me bc i have been so sick and my PFTs were so low. but things went amazingly. i couldn't have asked for things to go any better. she started off by saying she was concerned about my low PFTs; this could be my new normal, but she doubted it. ive been this low before and was able to recover. there is the possibility that i wont and this is my new baseline, but we dont know. my theory is that since my weight is the lowest it's been; and weight directly effects the lungs, it has caused my lung function to drop. she said she didn't think my lungs were sick enough right now to need to do IVs that she wanted me to remain on the antibiotics i was on... shes not positive what has caused all this to begin with: was it the C Diff? or was it an infection in my lungs? she doesn't know. and if my fever comes back when i come off the prednisone or while im on the prednisone she wants to see me. she also wants to keep me on the prednisone; very low dose, for a while because my adrenal glands are zapped. i will have to be weened off of the prednisone- but she doesn't want to ween me just yet.

are you following? i know it's hectic and confusing. feel free to ask me questions!

+ she brought up the words again that i haven't heard in a while. Lung Transplant. {insert doom music} okay, really, its not that scary. i mean its an option. they give it. i can take it or leave it. heres the gist. dr s said im at a point again where i should probably start the "process" back up. she said "statistically" im at a point where its a good idea to get on the list. because, you dont want to get on the list too early and you dont want to wait until its too late. see, once you get your new lungs a new time bomb starts ticking. she thinks i am a perfect candidate because i am so compliant. she told me there had been some research done on when the perfect time-statistically-was to do transplants, and who the best candidates were. she said the transplant team at vanderbilt it AMAZING- and they are getting a new head surgeon from Johns Hopkins in july!!! {Pittsburgh wanted her but Vandy got her!} she is referring me to the transplant clinic and i will probably have an appointment mid to late summer. there was a wholllle lot more said about the transplant but my brain couldn't hold it all. {if i remember anything of importance ill update you} im kinda in OVERLOAD right now. my brain is packed to the brim. but, i really was pleased with my visit today. i think we are on a good road. i think its kind of a dark road. maybe one with shadows and some sunlight shining through. i think everything will be okay. no. i know everything will be okay. i know that wherever the Lord wants to take me i will go. and i will keep my faith in Him that everything going on is in His master plan.

until then,

leigh allyn

Prayers:
~that God will reveal all the answers to the questions raised today and for me to understand what the answers are.