2016: A Spring to Remember?


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:


 











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