So, Mike has been really tired again. And some of his labs
are a little odd.
His AST/ALT are up over 100.
His AlphaFeto Protein has been up every 2 weeks.
His Hep C viral load is over 7 million.
He becomes winded more easily and continues to be very
tired.
He has had those leg cramps in the night where he wakes up startled, tries to leap out of bed and it is 50/50 whether he falls. I've had to massage them to get the knot to settle down...in both calfs and thighs. He is trying extra magnesium and hawthorn berry pills but we have to go over that with transplant folks at next appointment. Last 2 nights were better.
So, the plan is to watch and wait until his early April
marathon appointments:
Cardiology
(for Aortic Stenosis – Echo Cardiogram -- valve replacement surgery yet?)
Oncology
(MRI and what the heck is going on with tumor marker labs)
Hepatology
(no treatment until/unless kidney function is better – is it?)
Post TP
check up
All in same week.
Issue: FL Medicaid tells us each patient is entitled to
$1500 of out-patient hospital service in a year (July 1 – June 20). All services must have referral to Dr who
takes Medicaid, who is NOT a hospital based provider.) He has no more $$$ in
that account.
Transplant Team
prefers services to be coordinated. Most of Mikes Docs are at U
Miami/Jackson. So far all the bills have
been paid. But we have had to juggle around the colonoscopy and have had to
change to a local oncologist. But, so
far, Medicaid has been paying the Cardiologist TP and Hepatology. We don’t want to go to Joe the Ragman
Cardiology….Mike has serious issues here with liver and heart and want to be at
a major med center. I talk and talk to
Medicaid and say that Medicaid keeps paying the Trasplant Docs and so far the
Cardiologist. Or back to the jerk GI doc
who didn’t sent him to transplant til the oncologist got on the phone to
Transplant Team in Miami.
So I don’t know whether to take Mike down there or if
somewhere along the line he is going to get a bill for a zillion dollars. The
Medicaid lady tells me “it depends on how it is coded.” What kind of BS is
that?
We got bills last week for $2,500 from Cardiology for LAST
April’s echo and consultation. Ah,
Ha! He is screwed we think and have been
to that doc in August and December too….UGH $7,500! Will be coming our way. I called after I calmed down and they told me
his balance was ZERO. I guess someone
found the magical code? It is so confusing.
We have a primary care visit coming up and they are as
confused as we are. They just write referrals like they don’t care or
understand the rules either and we all hope for the best. NOONE knows how to administer the 80 page
booklet.
Mike has been ever so much better on a new antidepressant
Viibryd. Medicaid has kicked it
back. We’ll see how that works out.
Mike worked his whole life.
He had insurance until he was too sick to work. Then he sold his house,
and used the $$$ to pay for his private insurance and copays until the $$$ ran
out. It was $30,000 in copays the last year he COULD pay. Now it is Medicaid.
Sometimes I think that they are disappointed he recovered
from ESLD. If he died they could stop getting
letters and phone calls from me.
Carol