jim (help, please)

[Guest guest]

As promised, here’s the follow-up

posting. Forgive the cathartic vent, as I unlurk, big time, to this

support group.

Early this a.m., the phone rang… it

was Jim’s tx coordinator up at USC (who constantly reminds me, in the

things he says and how he chooses to say them, how USC isn’t good at

follow-up on their transplantees, the coordinators have back-breaking case loads,

there are so many waitlisted with whom they must interact, yada dada. To

all that, I say I understand, we’re appreciative of all they do, and I finish

up with “that’s what I’m here for, to make your job easier,

if I can, as I advocate for my husband & perhaps give you one less person

to worry about. We’re on the same team, you and I. And since I’m

not your average transplantee’s spouse, but a medical advocate who got

her training in the PSC School of Hard Knocks and am not a grad student of

sorts, as I continue on in support groups & remain in a learning curve for

her husband while trying to help others, you can be brutally honest with me

about a-n-y-t-h-i-n-g, right? Because our family’s already been

through that ‘valley of the shadow of death’ thing.”

These conversations tend to end up very well, as a whole).

But let me back up, if I can: Jim’s

last post-tx clinic visit was last April, where the hepatologist running clinic

that day said they had no recent labs on Jim, nothing since way back in 2005.

We’re shocked at this point, as at the previous clinic visit, I made certain

Jim requested a new standing order, as his next appt would be in the new year.

It was hell to even secure this appt, since Jim’s insurance changed

January 1st. Before they’d set an appointment, however, they had to

verify quality and level of medical coverage, despite our sending them all the

info, plus assuring them beforehand it was a top-tier plan of preferred

provider (the best thing for a hopeful transplantee is to have PPO coverage for

life. I cannot stress this enough for the transplantee!).

Segue back to the clinic visit: I say to

the hep “excuse me, doctor, but there’s nobody here more powerful

than you; do you think you could please ask someone to phone San Diego right

now and get them to fax up the labs they should have already faxed, since Jim

has a standing order in place? Jim & I will be happy to wait as long

as possible, and you can see other patients while we wait for the fax.”

To this suggestion, we end up getting results in less than 10 minutes. After

a cursory glance from the hep, something gets said about elevated levels, not

necessarily organ rejection, perhaps a possible fatty liver, Jim should repeat

labs in 2 weeks, blah blah. I ask the doctor, could this have anything to

do with the giant prednisone taper he was on for a flare of colitis, coinciding

with his last colonoscopy? (Pred used to be part of Jim’s post-tx

chemical cocktail, and therefore, Jim’s meds were in fact tweaked).

But my suggestion is summarily dismissed. Okay, fine.

We leave clinic with the sense we’re

gonna get to the bottom of things, somehow, eventually, and all this is

infinitely preferable to our having gone up there for nothing, not to mention

my returning home to the task of trying to figure out why everyone’s not

on the same page (again). That was my first mistake – assuming that

the hep’s call meant USC and Scripps WERE on the same page. Little

did we know at the time that they weren’t.

Jim complies with the hep’s request

that his labs be repeated in a couple weeks’ time (as opposed to his norm

of 2 months). Eventually, we’re wondering why there’s no word

back from USC – they usually call to say everything’s a-o-k, or

this med needs to be tweaked, or labs need to be repeated yet again,

etcetera. But zilch – so when Jim says “any word from USC?”

I get back in the saddle, lickety-split, to try to get everyone on the same

page (again). Then I am called out to Arizona… Jillian’s baby is

coming too early, and they need me out there to help.

Fast forward to recently, where I’ve

returned from AZ… to the task of untangling a lot of billing hoo-hah Jim

has allowed to accumulate. We’ve received bills that should have

been sent to the new insurance, but were sent to the old and rejected by them, blah

blah, I’ll spare you the details except to ask: can anyone recommend

something for my almost daily headache? LOL

Now let me back up a tad less, to last

week, when I AGAIN spent days trying to get San Diego and Los Angeles on the

same page re Jim. Long story short, mistakes were made by local people as

well as people up at Jim’s transplant center. I finally found an

angel in the form of Harry, who works in the lab’s Customer Service

department down here at Scripps Green in La Jolla.

(Should the fact that a lab department even NEEDS a customer service department

raise a red flag?)

Harry said I’d been doing a great

job, and wanted me to continue running with it, but I expressed no enthusiasm

about speaking w/Jim’s tx coordinator more than twice in any given

day. Are you kidding? I want to stay on the guy’s good

side! The coordinator had already surmised that someone had the wrong fax

#. Yep, he guessed right – the number down here turned out to be

missing two digits (so why, then, wouldn’t somebody notice that, and act

upon that?) God bless Harry, because he also found out something I couldn’t:

something about USC providing San

Diego with a wrong ICD9 code. As I assume

everything’s been fixed, I am assured that’s not the case yet, but

it will soon be.

If you’ve read this far,

thanks. Segue back to the beginning of this post, though, and why we got

a call this morning from USC: the coordinator tells me that finally, at long

last, the hepatologist has been able to look at a series of lab results on Jim,

and he is very concerned about a trend of elevated numbers, especially the Alk

Phos. The doctor wants Jim to have a liver biopsy, not stat, but asap,

and since I know Jim’s gonna ask, I determine from the coordinator that it’s

fine if the biopsy waits until the beginning of August (he knows Jim is

climbing Mount Whitney again, from July 27th to August 2nd…

Procrastinating on a biopsy can’t be

okay if we’re suspecting organ rejection, I tell him, as I also remind

him that I am tougher than his average patient’s spouse, and he can tell

me anything. To my surprise, after I say “so, what, are we dealing

with a fatty liver? Or suspected PSC recidivism, possible recurrent PSC?”

he says “yes” (whatever that “yes” means, it’s a

bit upsetting.)

I hold it together and call Jim. I’m

calm, because I’ve learned that’s what he wants from me, and how he

does best… which is why I’m dumping all this at the group,

now. After work, we talk again and he says he doesn’t want a

biopsy. It’s a bit like someone not wanting a mammogram because oh

no, what if there’s breast cancer? Or (since Jim’s a guy),

Jim refusing colonoscopies or dermatology appts, because he doesn’t wanna

think about possible colon cancer or more melanomas. To Jim, I say “forewarned

is forearmed, is it not?” Jim’s response: “No.”

To which I say “so, for you, ignorance is bliss?” (to which he

laughs).

So, questions for the group: should Jim

get the biopsy? If so, how do I convince him? If not, how do we

assert that to the doctors? Does anyone know if there are ways to rule

out fatty liver w/out biopsy?

Basically, gang, I’m asking your advice

in this, so I can be the best help I possibly can to Jim in all this.

With love to the group, Maureen (wife

of Jim, age 52-skidoo, UC '84, PSC '96, LRLTx # 36 @ USC in Los Angeles,

California, 12/7/01, thanks to our son; donor doing great; Jim has

chronic, recurrent, post-tx skin cancer/melanoma issues, et.al., '03 -

present); happy empty-nesters & delighted grandparents of Stryder *AND*

Indiana (Jim finally gets a namesake, woo hoo!). All in all,

life’s good, and we can think of no better reason for transplantation

than… the bliss of Jim enjoying his grandbabies!