oopsy daisy

[Guest guest]

oops -- i think i accidentally sent this group thank you/another attempt at

catching up just to irene. so here's a second mailing, this time to the

group:

our hearts are overflowing with gratitude with the PSC group's many, many

kindnesses to jim, jason, and our family. there are too many to mention,

but i need to make an attempt:

all of your cards were wonderful, and very much appreciated, irene...

actually, ALL of your many, many kindnesses, including those instant

messages and phone calls (especially that time when i was a bucket of

tears). i had to " be there " for jim, jason, jessica, jillian, jim's

family... it was wonderful to feel that you were " there " for me. :-) you

are a very, very kind person, irene. i'm sorry jim made his " los angeles

jailbreak " before we all had a chance to meet! i hope that by now you have

read my update, and know that jim and jason are doing wonderfully well.

to *add* to that update, i need to gear up and do battle yet again against

jim's insurance company (who, if you all remember, refused to go forward

with covering jason's costs re the living donor transplant unless jason

first obtained a letter of " denial of services " from HIS insurance company?)

well, it seems that bills for services rendered are now starting to trickle

in, and it seems they are denying payment, saying jason isn't " covered. " OF

COURSE HE IS! the surgery wouldn't have taken place if he wasn't!!! :-/

it's a good thing i can grit my teeth and " do battle " from the convenience

of my home, on the phone, with my foot propped up and under ice.

never a dull moment... :-)))))))

we also need to check on the status of jason's temporary " disability " ...all

paperwork was forwarded to usc university hospital, but jason has to date

heard no word... i wonder how long these things take? i'm glad jason had a

little hedge of protection, financially speaking, in his checking account.

i'm also glad human resources at his place of employment advised him to take

a little vacation " pay " in lieu of days. this means he'll be able to make

ends meet until he is fully back at his computer programming job.

as jason said in his Christmas letter to us, he's doing better, bit by bit,

each day. the hospital has said they don't even need to see him again --

they have put his patient file away for good! he looks a bit like napoleon

bonaparte, always putting one hand over his scar in an oh-so-distinguished

albeit protective manner. he's taking things slowly; isn't feeling " up " yet

to returning to his church (where he is a youth group leader, bible study

teacher and praise and worship band singer/acoustic guitar player for junior

and senior high sunday worship). he doesn't quite know yet how he is going

to field all those (same) questions from (well-meaning, caring, loving)

people... or how he is going to bear up saying identical things over and

over and over (how DO you do that? i guess you just... do it with a smile)

:-)

jim has a very long way to go before his appearance is reminiscent of, say,

5 years ago (when he was much fuller in the face), however words cannot

express to this group how amazingly different jim looks now! it used to be

that his teeth were whiter than the " whites " of his eyes... but going from a

bilirubin of 15.5 down to 1.++, you can imagine how the whites of his eyes

are very, very white now (his teeth are positively yellow by comparison!)

....and his skin color is sooooo much healthier! we didn't photographically

" document " everything, but we did manage to take before-and-after pictures

of the guys (pictures of their pre-incisioned abs, too)... and a few

pictures of the guys in pre-op, with our daughters/jason's sisters giving

the thumbs up " sign :-) ...i hope jason will soon be up to scanning a

photo or two into his computer so they can be sent to the PSC support group.

i know you'd appreciate seeing them!

also, thank you so, so, so much (and thanks also to martin, as well as

kathie (mom of rick), iowa mike, cindy, jen, colleen in boston, " mom " peg,

faith (kevin's mom), michelle in connecticut (and tony), sue (philip's mom),

kelly (and brian), and barb in texas) for the very generous gift certificate

to the chart house... one of jim's absolute all-time favorite restaurants!

they even have one right on the beach, right here in encinitas! jim's

appetite has returned with a vengeance, so it will be great fun for us to

dine at any of their wonderful locations and think of your thoughtfulness...

and the many kindnesses of everyone in the PSC support group :-)

i'm already planning to have their coconut shrimp in " your " honor :-)

thanks so much!

luanne, billy and sandy, leona and dick, edward, betty, thanks so much for

your great get well and Christmas cards... it was a very special thing to

receive snail mail in our hotel, see everyone's handwriting (iowa mike, you

have great handwriting!), and to put all your cards up on our walls as our

" Christmas " decorations :-) ...i used surgical tape (very, very gentle on

the walls, hee hee) to affix them to our door.

dee in peoria, all your cards were great -- especially the one of " darin "

you made over as my very own chippendale dancer... totally made my day... it

even made jim smile! ;-)

cindy, i love that " donate life " pad of paper you sent... i plan to try and

get lots more after this one's all used up! thank you for thinking of us!

barby, your card is a treasure -- as is your family photo. what an amazing

family! it's so great to put such beautiful faces to names!

larry, you get the prize for almost always being online for me, even at the

most odd (well, " odd " for me) hours. thanks for listening, for putting up

with me and my mood swings, and making all those attempts to chase my

worries away :-)

barb, your package (which arrived yesterday) was so wonderful! from the

sweet words in your card, to the awesome organ donor awareness/transplant

gifts of bumper stickers, the pin, the key chains and the license plate

frame, it was a very-much appreciated care package. thank you so much!

iowa mike, thanks for the postcard of fort madison (hope we get to see it

for ourselves someday -- jim loves old forts), for that hilarious surgical

cartoon (the surgical residents will get a kick out of it, 'though i don't

dare share it with the transplant surgeons... they are an, *ahem*

" interesting " breed when it comes to things like, ah, a sense of humor!) and

especially for your very sweet card... i treasure every eloquent word you

wrote in it, as does jim. what a special guy you are!

andi, thanks for running interference for me, with all those forwarded

articles on high-dosage urso/actigall immediately upon tx. jim's doing so

gosh-darned well, no sign of rejection in sight, all labs looking perfect,

so this would mean it's not like the surgeons would agree to start jim on

anything more than a low dose of urso/actigall, however... and jim's yet to

take any (despite approval to do so), i think because this idea came from

" me " and not from the doctors. dr. sher (the only female liver tx surgeon,

the tx surgeon who conducts the most research, and by far the most " open "

surgeon to proactive PSCers/support people/caregivers such as jim and

myself) enthusiastically asked for all articles i could throw her way. we

owe you a great debt for doing that for us, andi. i'll talk to her about it

again, if we see her on the 7th.

(andi, on another note, i have sent off to you another (small) parcel of

jim's unused ensures as a small thank you, not just for what you've done for

us, but for what *you* contribute/bring to the support group. it was sent

the day before Christmas, but i have absolutely no idea when it will

arrive... just be on the lookout for it!)

cheryl, i'll try and run with your question about whether or not living

donorship would have any (negative/adverse) effect on childbearing when jim

and i go up to usc on the 7th. if -- repeat IF -- jim gets to see dr. sher,

we'll have (seemingly) unlimited time with an opportunity for many

questions. if we don't get to see dr. sher at clinic, then i'll run your

concern/question by anyone else with an ear (and a heart) to hear.

personally, i don't imagine there would be any problems whatsoever, but it's

a very good question, and one worth asking.

congratulations to aubrey (and to caroline, who's made an " honest " man of

you) ...not that you were ever anything but honest, aubrey :-) (i've never

actually understood that particular phrase when it comes to the betrothed,

but i think it's cool that caroline popped the question, you lucky dog!)

and finally, to my very handsome and long-lost-irish-cousin (well, sorta

long-lost. but most definitely handsome!) gary o'brien, jim and i look

forward to a time in the future when we can host you here in our country.

you did thailand recently, i know... but i'm hoping there'll be a time when

you'll have a desire to come to america :-) i have the most wonderful,

amazing uplifting memories of jim's and my trip to ireland -- a lifetime

dream come true for me, truly -- and i am so VERY glad we got to meet you

:-)

i know i've probably neglected to thank someone for something that's escaped

my current sieve of a brain, and please, please forgive me for that. as

these things return to my head, i'll try and post a proper thank you.

before i end this, jim and i would like to say our prayers are with everyone

who is hurting right now.

it's 2am -- way past time for me to join my dear husband in bed.

much love,

maureen

Maureen

Hello Maureen,

Hope all is well with your FAMILY. In my " heart " I know it is. =)

You all have been through a lot and I am sure it will take time to heal.

I am anxious to know how everyone is doing and wondering if you got the card

I sent.

My love to all your family,

Irene