Tuesday, November 9, 2010

What do post-transplant CFers talk about?

A journey in cut and paste

bp1_154  BRANDON

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.

9 comments:

  1. That is the best conversation! I liked the fat lip part :) "im a delicate flower" thats priceless.

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  2. mmmm to be able to walk and talk and not cough lol

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  3. Really enjoyed reading that. Makes you realize how much non CF people, like myself, take for granted. Puts things in such good perspective!!! You have tought me so much and am so grateful for that:-)

    Anna

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  4. Who's that guy on the bass? He's hot.

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  5. That is Brandon Rees, he has CF and is post transplant, under 30...like maybe 24 :)

    He is not married, so I say, game on sister!

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  6. Haha kicking ass and taking names++

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  7. Gives me hope!!! I need double lung transplant!!!

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  8. I needed that ... Gives me hopes and what to look forward to! I'm in need of double lung transplant!

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