What do post-transplant CFers talk about?

A journey in cut and paste

 

Beth, Brandon                                                

Brandon: bp

Brandon: is that a recent pic in your fb profile?

Mary: yep!

Brandon: you look so cool

Mary: it is from me and my mom's visit to the cape

Brandon: one of my most exciting things post trans

Mary: i was trying to hide my slightly pudgy face that will go away soon! traveling- so much easier!

Brandon: haha yeah, for sure. how are you feeling?

Mary: i amf eeling okay. i am having a lot of sternum and scar pain lately

Brandon: ug that sucks

Mary: it feels like its getting worse and not better which sucks

Brandon: my thing in the middle always gets weird hurty pains

Mary: yeah they suck

Brandon: i hate it

Mary: did you know in heart transplants they take them out a year after? why not us?!

Brandon: i did not, i don't know...good q

Mary: probably "blah blah blah infection" or something. this is what i am worried about. 3 weeks ago i developed a bad wheez and they found the main airway to my left lung is swelling and irritated- not infected or rejecting though- so i still have the wheez

Brandon: yeah i had that basically sorta like a crazy wheeze,  like a kazoo right?i have stents in my airways

Mary: yeah- worse wheezing than my old lungs. if i had a wheeze then i would just cough up the junk and it would stop. this is just unstoppable.

Brandon: yes i have that

Mary: you do? they might do that to me if it does not resolve. what kind of surgery was it to put them in?

Brandon: bronch, bronch in the or for stent placement...the wheeze basically comes and goes now for me, not ever as bad as it was the first 3-9 months, but it will come and go

Mary: hmm. blah.

Brandon: yes, not gonna lie, it sucks, but you do get more used to it

Mary: tho i have come to like bronchs since they do all of mine in the OR and i get such good sleep that day and next :) is it wrong?

Brandon: hahahaha, not at all, they aren't bad right? piece of cake really

Mary: no. i guess i behave pretty inappropriately under conscious sedation, which they haven't told me outright, but i read in my chart, "ms. peters has trouble relaxing during ... and attempts to "help" or gets very anxious and angry." haahha

Brandon: hahahahhha, i have said some things to them, a few times, one time i was waking up, with the thing in, that was not good, i remember it, but it was like a dream, no big whoop. i bitched once because i woke up with baiscally a fat lip, i was all "yo, nurse and he-nurse, take it easy on the lips, i'mma delicate flower"

Mary: haha. i think i hit on dr.  ------  once. whoooops

Brandon: hahahaha well i just want to tell you

even if your face is alittle pudgy, that pic is just awesome

Mary: thanks!

Brandon: i feel like cfers get their personalities back post tx because you have the energy to be all that you really are and i love it, it makes me happy, you look awesome

Mary: i feel like that= like its two years ago- instead of wanting to be home all the time, i want to go out all the time.

Brandon: yeah

Mary: instead of wanting to be in jammies, i want to get dressed up

Brandon: it's awesome right? hahaha me too

Mary: i feel like i'm 20 again.

Brandon: you know what the best is?

Mary: i'm like WHERE'S THE PARTY AT?

Brandon: showering and getting ready in like 20 mins. that's the shit

Mary: no SHIT

Brandon: man

Mary: i totally agree

Brandon: i would have to be up literally 2 hours before whatever it was i wanted to do to shower and cough and rest and get dressed and cough, you know the drill, fucking nightmare

Mary: that happened on accident like a month ago. i woke up late and had to get my prograf level done. i was jammies to beautiful in a half hour and i was like HOLY SHIT, I HAVEN'T DONE THIS SINCE ... GRADE SCHOOL

Brandon: hahaha, it's awesome right

Mary: it's totally awesome. i'm trying to get over my habitual dread (dredd?) of showering. i keep thinking, "oh jesus i have to shower now." and in reality it is NOT a hassle and actually nice again.

Brandon: i know--i'm so happy--you waited so long and were so good

Mary: it seems true though, that as soon as you get fed up waiting and are like FUCK THIS SHIT you get called

Brandon: have you taken care of that #1 on your list?

[THE NEXT TEN LINES OF TEXT HAVE BEEN EDITED BECAUSE I AM A LADY!]

Mary: dude i totally want to post this convo on cysticgal with the title WHAT POST-TRANSPLANT PATIENTS TALK ABOUT

Brandon: go for it-- you know, as much as i wished i could have experienced life without cf, it has shaped us, and for the better imo, and i think that few people get to experience the joys we do, for such normal activities...maybe there's a degree of sadness to that, but i personally embrace it

Mary: it is really great--on friday i weent to a football game at the h.s. i used to teach at (still friends with all the teachers) and - after, i was walking back to my car that waas parked FAR away (not a problem!) and stood there watching a bunch of tiny kids playing in under the football lights while their parents waited for the team to be ready to come home.it was just this moment of like I CAN BE OUTSIDE IN THE COLD FALL WEATHER, AND WALK TO MY CAR, AND TAKE MY TIME, AND NOT BECAUSE I'M GONNA PASS OUT!

Brandon: awesome--i remember, you posted osmething about being able to walk and talk at the same time, and it sounds like a joke...but as we both know, not a joke, not a joke in the least, boy is it nice to stroll along chatting

Mary: totally. and to be able to walk as fast as your friends or family without thinking I MIGHT DIE RIGHT NOW

Brandon: hahahaha yes

THIS HAS BEEN A RANDOM SAMPLING OF S. POST-TX CFers TALK ABOUT, TUNE IN AGAIN SOON.