June
7, 2016
Not-a-Blog Blog
[Your Casa DaviLinda party invitation-prescription is at the
end of this blog]
Hanukah
2015 was the last time David wrote anything meaningful for friends, and we have
posted no blogs since December. Why
might that be? Let’s see. Casa DaviLinda house construction has finished. The massive landscaping activities have
dwindled to main
tenance and tweaking. The presumptive conclusion, then, should
be that our life has become a pleasant, yet not monotonous, quiet existence,
with little to rap about. Little
excursions here, nice dinners there, good walks with friends and the dog, the
usual knitting projects, cuddling the
cats.
Ah,
if it were only so.
Getting
old is not for sissies, nor is it for the under-educated in the ways of US
medical legalities. We have spent the last 6 months struggling our way to relative
wellness and then learning that the real battle is with Medicare, various
private insurance programs, pharmacies, specialty pharmacies, and
pharmaceutical companies, all in order to get medicines, get them in a timely
fashion, get them to Mexico, and get them paid for, all crucial to keeping us
on our spirals of improvement.
We
haven’t written anything because we haven’t had the time.
By
late January 2016 it had become obvious that Linda’s Pulmonary Hypertension had
ratcheted up its aggressiveness, leaving her unable to breathe easily. By late February it had worsened – can you
believe it? – to the point where she was unable to give more than the first
five words of a presentation about Drizzle
of Honey and medieval foods at the local Oaxaca Lending Library. Our Oaxaca pulmonologist, Dr. Ernesto G,
wrote a script for a portable oxygen concentrator, which we went out and rented
the very next day and have since then purchased.
At
the same time, David’s intermittent COPD kicked in big time. One evening David
literally could not breathe, so we jumped in the car at midnight and Linda used
her old racing skills and her blind eye to red lights to get him to the
Doctor’s office, where Dr. Alberto Z was waiting for him with an oxygen mask in
one hand and an albuterol sniffer in the other.
Now
we take turns with the oxygen machine.
By
then it was early March and it was time to drive to Rhode Island: We had to do
taxes, of course, and there were some medical specialists we figured we’d
better consult, and some fixing up to put the house back on the market. And
then, before we could fix up anything, the house sold. We didn’t quibble.
We
spent late March packing up everything left in the Kingston house. We didn’t have to move the remaining furniture
out because the new owners bought it, too. But there is flotsam and jetsam no
matter where you turn in a house that you’ve lived in for more than 25
years. So a lot of stuff got gifted or
donated. In a way, that felt good.
Anything we opted to keep, we have placed in the basement of Dan and
Jean Carpenter, as we are renting a bedroom there as our legal domicile and
mailing address: 274 Broad Rock Road,
Wakefield, RI 02879.
Doing
the taxes was relatively easy as we had been keeping pretty good records. Of course, life being what it is, as soon as
we filed those taxes, we got a letter
announcing an audit of our 2013 taxes.
That kept Linda busy for another 2 weeks.
Interspersed
were all the doctors’ appointments.
David’s liver continues to be in great condition, and the GP found him
fit as an aging fiddle; but his dermatologist, as usual, found a couple of
spots worth excising.
The
GP found Linda’s usual markers for
health, the standard blood tests, the standard blood pressure and pulse, all
fine. It’s when Linda went to the Pulmonary Hypertension specialist Dr. James
Klinger, that he peeled away the surface findings and dug deeper. With other
test results in hand, he frankly stated, “Your heart has crapped out. You don’t have enough oxygen to sustain your
bodily functions.” And he gave a 6-months-to-live prognosis.
David
& I shifted into overdrive. How
could we deal with this? Is there any cure?
No. Even though the medical world has been studying this condition for decades, no
"Miracle Max" has made a cure, with or without a chocolate coating. Pulmonary
hypertension is as of yet incurable. When it starts causing havoc with the
internal organs (kidneys, liver), there are some medicines to slow down the
damage, alleviate some of the secondary effects and losses of function.
It
imposes a concentrated reorganization of one’s organic lifestyle. For example,
Linda has come to treat the daily limit of 1.5 liters of liquid intake as a
game: what gets to be imbibed in that limit.
Just yesterday, a 16-ounce milkshake (with reese’s peanut butter cups
nicely pulverized) was the special treat. That’s ½ liter, so you can bet it was
a treasured sipping experience. Coffee,
the daily supplement? Not worth the
liters for the thrill. Through diuretics
I have shed 25 pounds, which goes to how that I was not filled just with hot
air, but a whole lot of expendable liquid as well.
Salt and sodium are also verboten
(no soy sauce, no Worcestershire). So
another fun adventure: how to combine all those herbs and spices, so long
studied, for interesting taste sensations. Balsamic vinegars are quite attractive !
Linda
“sent” David home in mid-April. Brother John volunteered to make the drive home
with him —many heartfelt thanks, John— and on the 7,000-kilometer way down together
they explored some new places. They
celebrated Passover in Bloomington Indian
a with daughter Abby. And once back in San Pablo Etla, John jumped
in making contacts to enable him to start a project comparative to what he has
been studying (and living) in Peru for the last 40 years.
Dan
and Jean Carpenter opened their house to Linda/me and have coddled me and made
sure that I am OK and comfy from morning to night. Dan has run the occasional errand when I
haven’t had the energy. He’s gone with me to a couple of appointments, just in
case. Jean has made me special food so that we can control the sodium count.
So,
what has the medical profession come up with to treat my triad of conditions
(pulmonary hypertension, Raynaud’s, and scleroderma)?
One
approach that has been around for several years requires a 24/7 infusion pump
with a catheter inserted toward the heart. I’d have to live my life next door
to a research hospital. And when I think of the speed bumps and superbaches in
Mexico..... Not!
I looked for other options. One potion has
been around for many years: sildenafil (Viagra). Men take 1 for ED; I take 9
daily and have zero problems with ED. There are
some other new, really new, possibilities for therapies that might increase
longevity. One was approved for use in March, barely 3 months ago. My doctors
are excited, but caution me that the data on longevity data is a might short.

To decide which and how many of
these concoctions and in what order, and in what strength – has taken much of these
last 2 months and a lot of patience and my staying in Rhode Island. I opted for
a combination of 3 very strong pills, including the new kid on the block. And for the last month I have been carefully
taking them according to schedule and then doing blood work almost weekly to
get a reading on if there is any sign of improvement, and then gradually
ratcheting up the dosage. I also do occasional echocardiograms and what has
turned out to be the truest indicator of health: the 6 minute walk test –how
many meters I can walk in 6 minutes.
While I had taken these walk tests quarterly over the last 6 years and
never missed a beat and walked more than 1000 meters in 6 minutes, when I did
the same walk on April 1, I did not last 6 minutes and could only muster 243
meters. “Oh,” said the doctor.
On
June 3, this last Friday , I repeated the whole round of tests. I can now walk consistently without working up
a sweat, for 6 minutes and I covered 487 meters. Incredible improvement. The heart pressure
measurement is almost to an acceptable level.
Not normal, but acceptable enough to indicate that my body is responding
favorably to these new meds. My kidneys
and liver are at almost normal levels. Dr. Klinger has revised the 6-months-to-live
prognosis. Upward!
But then there are the medicines. Prepare
yourself for two minutes of our venting, or feel free to skip to the end of
this blog.
For the last 2 months, Dr. Klinger’s office personnel and Linda have
been doing nothing but paperwork to get:
1/ approval by the specialty pharmaceutical
manufacturer to actually authorize me for the drugs;
2/ approval by the specialty pharmacy to
actually ship the drugs;
3/
certification by Medicare that I need the drugs;
4/ approval by supplemental insurance
United Health to underwrite a portion of the cost of the drugs
BTW: the 3 drugs’ cost is hefty: sildenafil about $10,000/year; Opsumit, about $60,000/year; Uptravi,
$180,000/year. I say “about” because while those are the sums generally
mentioned, no one will speak precisely. In all of my contacts with the 4 powers
above, no one has ever given me a base cost that I could count on. We have written to our congressmen, asking
them to push for openness of pricing, and for including drugs for orphan
diseases in the general pricing pool for health insurance, and urge you to do
the same.
As if that were not enough frustration,
since Opsumit & Uptravi are new, the FDA prohibits dispensing in more than
1-month supplies. There seems to be no way to get a travel allotment. So every
month, Linda will get a call from a case nurse for each of these 2 drugs to
determine how many pills are remaining. And then, they will order the next
month’s supply.
Oh, and Mexico seems to be more scrupulous
about drugs mailed into the country than they are about drugs smuggled out,
with the general advice being that (1) approvals to import by mail are complex
and take forever to acquire, and (2) even then one cannot count on a mailed
shipment clearing customs. So, if we can’t rely on the mails, we’ll have to
rely on the males (and females) who travel a lot to bring us the two bottles of
monthly shipments. The backup: we’ll have our liver-in-laws post them to the
border and we will either fly to Houston monthly to pick up medicines shipped
to us at a mail box address, or drive to Laredo to do the same (1000 miles each
direction).
The
first delivery team is needed should be somewhere between July 2 – 5 when the
medicine is delivered. Anyone returning to Oaxaca at that time? Anyone thinking about coming to Oaxaca to
visit and who would bring me the meds and spend a couple of days at Casa
DaviLinda?]
Breaking news: Linda returns to Oaxaca on Thursday evening
(June 9). That’s the plan, though we’ve grown accustomed to writing down all
plans in pencil, not ink.
And she is eager to give a
warm hug to dear friends who have been wonderful penpals far too long. So, here it is, the official Rx for you from
the returnee: