Re: tim long - RE: Thank you all-Maureen

[Guest guest]

tim, dear tim, your comment about being teary-eyed reminded me of when i finally got to drive jim AWAY from the hospital... it was Christmas season, and we were holding hands in the car and listening to a CD of Christmas carols (i'm such a dual-tasker! thank goodness for automatic transmissions, huh?!). every time our ears heard melodic voices angelically singing anything akin to Jesus' birth meaning new life for the world and mankind... poor jim would just focus on that "new life" sentiment and lose it, big time.

ahh, the emotions! enjoy them now, while you're feeling them. you'll always have them, but they won't always be quite to the intense degree that they are now. it was hard for jim -- he didn't like not being in total *control* of his emotions. but this is a special time, tim. just continue riding that sometimes overwhelming roller-coaster :-)

actually, i use a different analogy: i call PSC the incredible roller coaster; but now that you and jim are transplanted, i say it's a bumper-car ride. but those are equally adventurous, too, right? :-)

this may not apply to your wife, but if irene happens to suffer a meltdown later, have her write me privately, please. ruth and others warned me it would eventually happen to me, and they were right -- it did. the transplanted PSCers certainly have it rough, but the caregivers do, too... apples and oranges. i had to be sooooooooooo strong for my husband, my son, my daughters, jim's mother, jim's brothers, etc... this didn't happen to me until much later in the game. just as tim helped you realize you're not alone in this, irene needs to know she's not, either. please tell her from all of us here that this is as much her support group as it is yours :-)

tim, your comment about the verbal diarrhea also sure made me smile :-)))))))))))))))))

jim's tx -- and allllllllllllllllll those steroids -- turned him into a veritable chatty cathy! to prove my point, the following is from my PSC post of 12/13, just 5 days post transplant:

"...his brain suffers the occasional fart... e.g., he was talking with one of his nurses from the philippines, and he couldn't think of the word "hail" to use in his conversation with her. his "brain tape" also does a lot of rewinding... in the midst of conversation, it will jump WAAAAY back, and he will start talking all over again about "old news" (how in his course of nursing treatment, it was [for him] going from one torment to another... beginning with the ventilator, moving to his pulmo horrors and the NG tube, etc.) every day he speaks of it as if it were yesterday. his sense of time is skewed. he remembers much, and in great detail... but the "precisely when" switch isn't always flipped. that's why i have my book. he seems relieved i'm documenting everything. document, document, document -- i learned that from a biola university professor :-)

baby steps -- he's sleeping better because of many things, in part 'cause his catheter is out... sleeping very very soundly except to get up and go to the bathroom every couple of hours. so he's thrilled he's sleeping well. no more JP (jackson pratt) tube for jim (which essentially drains his drainable innards into an exterior pouch). another phone call tonight (besides to us at the hotel, that is), this time to his brother john. i wonder if john notices his unusual chattiness? :-)

oh, man, this is soooo funny to observe: as i was called into jason's room today to be coached regarding all jason's assorted discharge instructions, i gave jessica my notebook and pen so she could continue to write "for" me things jim said, needed, etc., in case i missed something important.

the first thing she wrote down?

"dad talks a LOT!!!"

:-)

i tell you, jim spends every waking moment talking. he knows every nurse by name, and every detail of their lives: their marital status, where they hail from, how long they have been a nurse, whether or not they have children, their favorite foods (he's become very food obsessive), etc etc etc etc... it is nonstop yabbity yabber. normally, i'd be the talkative one, but this is so stupefying, i'm pretty much mute (can't get a word in edgewise, so i sit and write and write). the nurses just look at me and smile like they've seen this before a zillion times over (par for the course).

he's going from 80mg solumedrol (liquid steroids) yesterday to 40mg today... this down from 1000mg the day of the surgery! so, in time, he'll be back to his old, man-of-few words self. he DOES realize this about himself, but he is at a loss to know how to zip his lip... i lamented with him on the phone last night, and he offered to instruct the docs to keep him at a "maintenance" dose of chattiness, just for me. i thought that was SOOOO sweet of him :-) "

so, tim, there ya go. jim and i sure know where you're at! :-)))))))))))))))))))))

gentle hugs to you and your wife,

maureen ( & jim)

[Guest guest]

maureen and jim, We have a lot in common, Jim, I make it the first point of business, when in the hospital, to make sure every nurse possible enjoys coming into my room. HUMOR is my way of surviving. Ireally credit the sense of humor I inherited with bringing me through a lot of stressful moments during and after the transplant. I also learne a lot about people from a friend that I used to travel with for Gen Mot. I do believe that he would talk to the wallif he could figure out how to get an answer.

I appreciated your post about the hernia, as, they are trying to decide whether I have one one the left side or if it is an acities pouch. ??

If I ever get caught up I will write the group about my rej fun. Tim L