Re: update on Jim (& we're off to Ireland! Again!)

October 19, 2006

Maureen, I don't have a whole lot to offer but I can tell you how my

cousin responded to having her colon removed some 10 years ago. At

first she had the J-pouch and eventually " graduated " to no pouch at

all, and her body eventually adapted and she now is able to make

fairly solid feces so she's not constant diarrhea like you would

think. I know, great conversation pieces amongst family but we were

visiting one day when I was in the hospital with pancreatitis after a

bad ERCP and we were comparing war stories. Hope this helps ease any

of yours or Jim's distaste of thought of having his colon removed.

-

>

> Time to unlurk, for those who might be interested to receive an

update on

> Jim. Lots to report, so mea culpa in advance for a long post (but

I haven't

> posted in a LONG TIME, right?!) For starters (and briefly), Jim

recently

> climbed Mt. Whitney again, but the effort was cut short by a

brother (with

> whom Jim buddied-up) getting very sick, very early into the climb.

Jim was

> in even better shape for this climb than last time (with ),

but Jim's

> brother had neglected to sufficiently condition himself.

>

> Now for the " medical " stuff. We met last week w/Jim's local

hepatologist

> (thanks, btw, to who, in our instant-message conversations,

boosted my

> confidence to tackle this battle as well as to /Deb in VA,

for your

> off-list e-mail answer which also helped! The Dr. did ultimately

up Jim's

> Urso dose, but not quite to the 30mg/kg high-dose level (but

considering how

> his saying no to upping Jim's dose being our reason for the appt in

the 1st

> place, I'm considering this a battle won). Hopefully, diarrhea

won't become

> an issue as he adjusts to the increase. Interestingly (or perhaps

I should

> say alarmingly!!!), in this process, it finally dawned on Jim that

he'd

> " misunderstood " the Rx instructions (2 pills, twice a day) and only

popping

> one pill in the morning, and one at night. So, for as long as this

> (under-prescribed) drug has been prescribed to him (many, many

years now),

> he's been, ahh, " under-dosing " himself ack!

>

> Of chief concern to the doctor is the frequency of Jim's colitis

flares

> (which unfortunately have coincided w/Jim's colonoscopies), atop

Jim's

> unacceptable colon cancer risk. The doctor admits that his finding

> dysplasia (let alone cancer) during or even near the time of a

colitis flare

> could be akin to the proverbial needle in a haystack, & it's time to

> consider removing his colon. The doctor reasons that since Jim's

colitis

> dates back to '84, the cancer risk has grown statistically to a

frightening

> level... & adding to that, Jim is of course immunosuppressed due to

his 2001

> tx (which certainly leaves him wide open to cancers, sometimes too

soon & to

> a serious level, as Jim's dermatologists would most definitely

attest). Jim

> asked about a blood test for colon cancer (which is great on Jim's

part;

> he's not one to ask many questions); the doctor answered that

although there

> is a colon cancer marker, when the numbers go up, it's an indicator

that not

> only is there colon cancer, it's virtually too late because it's

already

> metastasized. Essentially, we're talking a useless medical test?!

>

> So, is that sufficient reason to yank a colon? According to the

doctor,

> yes. And since he shared with us, we appreciate where he's coming

from: he

> recently lost a beloved patient with Jim's same history of

UC/PSC/LRLTx, to

> an agonizing colon cancer death. So Jim's doctor experienced, 1st-

hand,

> something so painful (to both the patient & to him, too,

emotionally) that

> he later vowed he'd do everything possible to avoid ever losing

another

> patient that way again (especially one with whom he'd developed,

over a long

> period of time, a real friendship).

>

> Obviously, we wish we could avoid (another) surgery. Jim told his

doctor

> (after stopping mid-sentence to ask me 'Maureen, what's that word I

want to

> use, the word that starts with P?') he wants to be " proactive " &

control his

> colitis (this from the guy who refuses to give up pouring chipotle

sauce

> over a garden salad, or munching cheese-stuffed jalapeno poppers

drizzled in

> chipotle sauce during a football game, or ordering spicy Chinese

food?!).

> Dang -- which reminds me, I forgot to discuss " that " part of Jim's

diet with

> the doctor (shoot!), in my typical " Jim won't listen to Maureen "

way for Jim

> to hear his doctor explain those kinds of dietary choices aren't

exactly

> " good " for active ulcerative colitis. But I digress: the Dr.'s

response to

> Jim's " proactive: comment was a blunt, " Jim, the only thing that

will truly

> 'control' your colitis at this point would be to have it removed. "

>

> The way he put it: no colon = no need for colonoscopy, no

prednisone to

> treat colitis flares (adding prednisone back into Jim's chemical

cocktail on

> a daily prophylactic basis for the purpose of helping control

colitis would

> certainly factor into Jim's jiffypopping skin cancers, which is why

Jim sees

> his dermatologist every 16 weeks). In short, no colon = no colon

cancer

> worry.

>

> So, another surgery. Yikes, another step closer to the lifetime

cap on

> Jim's insurance. And it looks like we're in a new learning curve,

huh? And

> since there are members here who've been down this road before us,

or their

> loved ones have, Jim & I could sure benefit from picking your

brains &

> heeding your advice.

>

> I seem for the most part able to keep things in healthy

perspective, but how

> I wish I could say the same for a few of his, ah, relatives who

seem only

> too eager to re-enter crisis mode, a la some strange version

of " Munchausen

> by Proxy " ! I kid you not -- the second they learn Jim's left work,

they

> phone me to rat-a-tat-tat ask " I understand Jim had a doctor appt --

is

> anything wrong? Is he sick? What's going on, is he okay? Are you

SURE

> he's okay? " During the appointment, Jim's supervisor text-messaged

him,

> several times, to ask him if he was okay, what was going on, why

was he at

> the doctor and this particular person isn't a relative sheesh,

crazy.

>

> The " life & death " part of Jim's timeline occurred *BEFORE* the

living donor

> transplant. Having a colon yanked? Serious stuff, sure, but it

pales in

> comparison to our dark days 5 years ago. We'll get through

this! " Catbert

> & Co " may prove a tad difficult to our process, our right to

privacy (as

> they did before!), but I'll do whatever I can to make sure history

doesn't

> repeat itself -- a CaringBridge site, definitely. My time should

be spent

> helping my husband, not kowtowing to others' insatiable need to be

kept

> updated within nanoseconds of anything, important or trivial,

taking place.

>

> This group KNOWS I can write & write (especially whenever Jim

encounters an

> unexpected blip on his medical screen), but no amount of cathartic,

> long-winded updates on my part feed these folks' ravenous need for

> information. CaringBridge should, in theory at least, make any

future

> surgery or medical procedure Jim should have to undergo much less

of a

> " control " issue. You could keep us in prayer on this matter, if

God touches

> your heart, since, in the past, whenever we've chosen doctors (or

hospitals,

> or a treatment plan), some question our line of thinking & urge

their own,

> " better " way. It's beyond irksome; it's a flat-out control issue.

We can't

> seem to escape it, as we're talking a family business w/most of the

family

> employed there.

>

> Our daughter works for Princess Cruise Corporate, & all 3

kids/their spouses

> decided they'd all (including Jim & me!) book passage on an Alaskan

Cruise

> next spring, so it's unlikely surgery will happen before then.

Which is

> fine, because this timing allows for a learning curve, Jim can

consult with

> experts, select a surgeon & surgical plan, & we can figure out a)

can we do

> this in San Diego, close to home? *versus* will the tx center up

in Los

> Angeles recommend they do the surgery? Opting for AWAY from home,

while it

> does have a down side, still have a certain appeal, if you get my

drift...

> fewer " well-meaning " types breathing down our backs, visiting Jim

too often

> & for too long (so sayeth Jim, & I concur), phoning into his room,

despite

> Jim's preference to be the one making the calls, when he feels

rested &

> ready. I've 2 sisters up in LA county, each approx 45 minutes from

the tx

> center (where this surgery would also likely be done, just on a

different

> floor). Despite BOTH sisters currently contending w/hospitalized

husbands,

> I'd think either one might allow me to stay w/them for Jim's

duration,

> should that need arise. Each of them know I'd be the perfect

houseguest, as

> I'd rarely be there except to shower & change clothes!

>

> I took KC Rich's prior advice to heart (re: swaying Jim toward any

Dr's

> advice), & am approaching this that way, i.e., we need only make

this about

> Jim doing everything he can to ensure he'll stick around as long as

possible

> to enjoy ALL his grandkids. Yes, Jim encountered some typical,

initial

> denial (understandable!), however, the Dr's dialogue w/me (spoken

in front

> of Jim, all for Jim's benefit) had an impact, especially his

abruptly

> turning from me to say to Jim " You know what? NOTHING I or Maureen

say to

> you will convince you to do this; you have to be ready to make this

> decision, & this must be YOUR decision, Jim, made by you, not one

made 'for'

> you. That being said, NONE of my patients who've opted for this

surgery

> have said afterward they're sorry they did it. It may take a while,

> sometimes upwards to a year, but they all eventually have

admitted 'Why did

> I resist it? It's the best thing that ever happened to me!' "

>

> If Arne (or anyone) has access to the info, could you please verify

O'

> 's e-mail address(es) for Jim & me? I have two for him, and

I'm

> Bcc:ing him this as well. We're accompanying & to

Ireland,

> leaving TOMORROW, as & Mindy house-sit for us. I've written

O'

> to send him our (Dublin) itinerary & (Dublin area) hotels, but so

far, no

> response. As he holidays abroad every year, he might be gone? (We

don't

> even want to think about that sweet guy being sick!)

>

> Whoa, & Andy totally caught us off guard w/that one

(inviting us to

> see Ireland w/them, that is). Our daughter married a CPA bean

counter who

> truly counts each & every penny, so I guess the temptation of

splitting

> costs (rental car, family-style dining, even sharing some rooms a

few nights

> here 'n' there!) was irresistible?!

>

> During a recent visit here, " overheard " her dad & I talking

about

> tackling the task of cleaning up his desk & paying the bills; well,

> took it upon herself to " tidy up " FOR us, & in that process --

yippy skippy,

> serendipity -- she unearthed a quarter million flight miles

Jim " forgot " he

> had. It was too late to cash in on coach or business seats, so the

only

> Dublin-bound " freebies " available to us were... 1st class! (Oh,

my, can you

> just see Maureen having a heart attack at this point?! And the ear-

to-ear

> grin on 's face as she told her?) The balance of miles were

used

> toward return flight (coach), and we were also able to " discount "

&

> Andy's seats to the tune of 50%. We have an hour layover in

Charlotte, NC,

> as well as a dilly of a layover in Philly (4 hours' worth... anyone

wanna

> meet us at the airport? LOL!), but we're all thrilled with this

windfall.

>

> The last (1st) time Jim & I saw Ireland, Jim as most of you may

recall was a

> very sick puppy (altho after 2 transfusions, his Dr. declared him

fit enough

> to go). The itinerary was planned " for " him -- the triptych always

situated

> us close to a hospital -- & was planned with his interests in mind:

e.g.,

> the Ballycollig Gunpowder Factory, Waterford Factory & their

glassblowers,

> plenty of nap time & /or soaks in a hot bath (that darned PSC really

lowered

> his body's core temperature... he always complained of feeling

cold!)

>

> This time, though, we encouraged (whose degree is in

Recreation

> Administration) & Andy to plan their " dream " trip, w/scant input

from us.

> Nevertheless, I insisted they include the town of Adare & Bunratty

Folk Park

> -- as I knew they'd love them -- plus lunch at Hotel Ballymaloe

(formerly

> the finest culinary offerings in all of Ireland, likely due to

their close

> proximity to Ballymaloe Cookery School... but has now been upgraded

to the

> finest in Europe!) & -- don't laugh! -- a Butter Museum (Guinness or

> 's notwithstanding, if there's anything we Irish love more

than

> salmon, lamb, potatoes or cabbage, it's... butter from Kerry cows!)

>

> Jim & I get to do the déjà vu thing at Castles Blarney & Cahill;

Trinity's

> Book of Kells; Waterford Factory; St. 's Cathedral

(that " Door of

> Reconciliation " is somethin' else!); & Muckross House & Abbey

ruins... but

> the kids did opt for plenty we didn't do back in the summer of

2001: Castle

> Dublin; window-shopping Francis Street's antiques; the Guinness

Storehouse

> (fascinating even for non-drinkers); Powerscourt Estate; Rock of

Cashel

> (with an overnight, afterwards, at Castle Carigeen); driving the

Dingle

> (Peninsula); Irish National Heritage Park; Fort; Limerick &

the

> Cliffs of Moher; Hook Lighthouse; Killarney National Park; Torc

Waterfall;

> the Burren in Kilfenora; Connemara National Park; Tullamore Dew

Heritage

> Center; Swords Farmer's Market; & a glimpse of Trinity

College's "

> Boru " (aka the oldest surviving Irish harp, oak & willow with brass

strings,

> circa 15th century. Its image appears on Irish coins, FYI)!

>

> Okiedokie, there you have it. Oh -- except for one last exciting

(that is,

> exciting to me) thing: this time, I'll enter ( & exit) Ireland with

my

> brand-spanking new Irish Passport, that I received just in the nick

o'time!

> Great Irish passport story, but that's for another time. ;-)

>

> With much love to this amazing group,

>

> Maureen (wife of Jim, age 52, UC '84, PSC '96, LRLTx # 36 @ USC in

Los

> Angeles, CA, 12/7/01, thanks to our son; donor doing great;

Jim's

> recuperating from another nasty colitis flare, & he's currently

between

> dodging post-tx skin cancer/melanoma bullets, but joh-oh-joy, now

we're

> starting a new learning curve for a probable mid-2007 colectomy!);

happy

> empty-nesters & delighted grandparents to 20-month-old Stryder *AND*

> 4-month-old Indiana . All in all, life's STILL good, & if

you're

> sitting on the fence about transplant – including living donor – we

can't

> think of a better reason than the bliss of Jim enjoying his

grandbabies!

>

October 19, 2006