tabascoadmiral

Our Goodbye

2009-06-29T14:37:00.000-07:00

When I heard about Mason's death a couple of weeks ago, I knew that I needed to go to his service, however and whenever.

Last Friday morning, I left home at 4:30 am to catch a flight to Las Vegas. Fortunately, the US Department of Transportation rules no longer make it necessary to jump through excessive hoopery to take an approved oxygen concentrator on a flight, so I can again travel with a minimum of excess hoo-hah.

Arriving in LV, I went immediately to the Hertz counter, and got my car which had a bonus GPS navigation system, so I plugged in the address of the hotel where my reservations lay, and took off across the desert.

Driving south from Las Vegas was a first-time experience for me. I found it hard to believe as I went down US 95 in my air-conditioned car, that the 116 degrees showing on the external temperature sensor was accurate. I didn't see mirages, or heat waves rising off the road. It was just sunny. Relentlessly, insufferably sunny.

Searchlight, Needles, Bullhead City all flew by on the road.

Finally the turnoff for Lake Havasu City, and the road south. The landscape was scarred with dirtbike trails, and I got a better idea of why he loved them.

The town is brand new and dusty at the same time. It's a planned community, 45 years old, so nothing has any sagacity in its look. The water of the lake is incredibly, artificially blue, not unlike the ocean off Palm Beach. In PB, I always wondered if the rich folks had had the water tinted. I didn't find any evidence of rich folks in LHC. Just lots of good solid middle class sorts.

I saw Catalina when I walked into the hotel lobby, and was told that Marcia had already checked into our room. Marcia had kindly hit the grocery on the way in, and bought snacks and a good-sized bottle of margarita premixed, which we did a good job on that night and the next.

On Saturday, we rose late and had breakfast, then proceded to get ready for the service. We didn't want to arrive too early, but when we arrived 20 minutes before, all the seats were taken, and folding chairs were being brought into the chapel and into the lobby where a video feed was available. Lots of folks in memorial t-shirts, lots of folks on scooters and wheelies, on walkers, with oxygen hoses. The dirtbikers, and the PHers, all together maybe 200 people.

First to speak was his older sister, then his flight instructor, then his boss at the motorcycle shop where he had worked. Each of them described precisely the Mason we all knew; sly, funny, mature beyond his years, laid back, and resourceful.

Then his dear mother stood up, and in her agony, she brought up all her own hurts and pains, and it was hard to watch, and hard to see.

After she was seated, I stood and read my own blog posting from below here, and a card from my pal (and Mason's) Colleen, which said all the right things. Many people thanked me for our messages.

We went to a reception in a nearby restaurant, met with his family and friends, renewed acquaintance with Mack and Mary (and mini-Mack), and explained our idea of the Mason Hoffman PHA Scholarship Fund, a fund for young adult PH patients (18-24) to help them and their caregivers to attend the biennial international conferece, in honor of the way and place that most of us first met Mason. His family is thrilled with the idea.

We left the restaurant and went to the hotel to cool off and recoup... it was tiring emotionally and physically. We went to be pretty early, but not after chatting in the PHA chat room for a little while.

On Sunday morning, we woke up and had breakfast together, the Three Musketeers, and then started on our journeys home.

I had done pretty well for the whole weekend, until I was headed out of Lake Havasu City, and the old "Mike and the Mechanics" song "In the Living Years" came on the radio, and I cried all the way to Needles.

Say it loud, say it clear

You can listen as well as you hear

It's too late when we die

To admit we don't see eye to eye.

I got on the plane about 3 in the afternoon, and walked in my front door at 1 am. A long hard trip, but a very satisfying one.

New Car

2009-06-25T14:24:00.001-07:00

Miss Kitty, the Jaguar, has gone to her reward. Or to Trade-in Heaven, whichever.

She was to be inspected for safety in June, and I knew a couple of things which were not going to pass. However, when the mechanic called and told me the extent of it, well, it was apparent that Miss Kitty was going away.

(For the mechanically inclined, she needed new tie-rods, and in Jaguars, they're a single unit with the rack and pinion. She needed lower ball joints, a thousand dollars worth of tires, brake pads, and the air conditioner was acting funny.)

So, I started looking at all these deals out there... everybody wants to sell you a car. I had never had a new car, but the inducements made me look.

I looked at the domestic market, but the combination of what was available, what was offered in financing, and the prices simply didn't excite me.

I don't generally like Japanese cars. I feel a little sardined into the tin canniness of them.

New European cars are outside my budget.

Until I looked at Volkswagen. I looked at what was available, and the prices were very reasonable, the financing was competitive, and I went to test-drive on Monday.

I drove a Beetle. It was cute, and fun, but it wasn't very comfortable. I couldn't imagine driving hundreds of miles in it. We walked around the lot, and I looked at Jettas, Rabbits, the CC, diesels and gas. I told Pavel, our salesman (freshly from Russia), that I'd like to see a Jetta with a beige interior. He laughed, and said that he knew why; his car is black on black, and he had only recently discovered the joys of American summertime on dark seats.

Tuesday he called and said he had a red one and a white one. I went over and drove the white one, and really liked it. I filled out the paperwork to get the ball rolling, and made application at the same time at our credit union. Tuesday night, we went back to the dealership after the Cap'n got off work, and told him that the white one was the choice, and he offered us a better interest rate than the credit union, so we signed the papers, and on Wednesday at noon we traded both Miss Kitty and the ancient decrepit Volvo (dog and outboard motor car) for a shiny white Jetta named Señorita Bianca Jetta. And for the very first time, at the tender age of 51, I have my first new car. 17 miles on the odometer.

She has ball joints, rack and pinion, tie rods, air conditioning and all the things Miss Kitty was lacking. Additionally, she has a built-in satellite radio, so that I don't have to bring it back and forth from the boat any more, and bluetooth hands-free for the phone, so that I don't have to try to find another hand for the phone.

She is zippy, and responsive, with a 6-speed automatic transmission.

I don't look as cool as I did in Miss Kitty. But the a/c keeps me cooler.

The Cap'n is going to add a 12v plug inthe back for my oxygen... she came with only one.

And we still have The Cap'n's Batmobile for looking cool. And no, his a/c doesn't work either.

Dear Janet and Dale,

2009-06-15T13:12:00.001-07:00

I cannot imagine the emptiness you feel with the loss of Mason.

I can only tell you that he has been a part of my daily life for the last three years or so, and that he is the bravest person I've ever known.

We had a special relationship, because he is a smart ass. And people tell me that I tend that way, as well. We harrassed and insulted one another, mostly for sport, but also because we felt safe with one another. We also talked about treatments and symptoms, what a pain insulin was, how steroids destroyed any chance of sleep. (and why we were both up at 3 am...)

One cold Saturday afternoon, I watched a really awful movie on the Comedy Channel, "Bad Santa." The movie was set in Phoenix, and one of the central characters was an odd quirky little fellow named Thurman, who lived with his deranged grandmother "Grammie" who was played by Cloris Leachman. When I saw Mason in chat that night, I asked him how much he had made starring in that movie as Thurman. He immediately told me that he made more than I did playing Grammie!

And so it began.

Thurman's wish in the movie was for a stuffed pink elephant. I threatened to send Mason a stuffed pink elephant, maybe a thousand times; "Young man, if you don't straighten yourself up, you're getting a pink elephant in the mail."

We talked about his bucket list. He talked about coming to Washington DC last fall, but a hospital stay and his continued weakening prevented him from travelling. So, we did some virtual touring, me showing him pictures of some of the monuments, and where they were in relationship to really good pizza places.

He told me a couple of weeks ago he didn't think he was going to finish his bucket list. I told him that it was okay, most folks never even got around to making the list. I think he understood that living as hard as you can, as fast as you can, sometimes didn't take a lot of physical motion, that living intellectually on the edge with an open mind ready to absorb whatever the world had to offer, this was a rich life as well.

He knew every corner of the internet. He knew more about his disease, his treatments, and sadly, his prognosis than most of the doctors I know. He knew how to make friends, he knew how to judge character quickly. He had unattractive nicknames for some of them that made me howl with laughter.

And in the last weeks, when he was too tired to sit up and chat, and we knew he was very sick, and rightfully depressed, we, a bunch of old fat women stuck in our recliners decided to cheer him up. So when he came into chat, I told him that we had decided to all chip in and buy him a hooker, and precisely which sort did he like? Was he more the Laura San Giacomo sort, or the run-of-the-mill Julia-Roberts-Pretty-Woman sort? We bugged him for several days about having one show up in a nurse's uniform, so you wouldn't suspect anything. I am ashamed to tell you that he thought this was hysterical.

And now, there is no more.

I am fairly confident, however, that when I go to Our Father's House where there are many mansions, there is going to be a tall skinny kid on a dirtbike destroying my carefully manicured landscape.

Rest in peace, Thurman.

So I'm a slug. Sue me.

2009-06-07T13:49:00.001-07:00

At the end of March, the Cap'n had a presentation to give in Vancouver, BC, and I decided to tag along.

It is not good form for us to travel together when I'm tagging along for conflict of interest reasons, so he took one airline and I took another. We were scheduled to land in Seattle within a few minutes of one another, and then we would drive on to Seattle.

I had rented a car for us, because when the Cap'n rents a car on his gummint credit card, no non-gummint folk are allowed to ride in it. Even a taxpayer like me. I had all the paperwork with me.

Then it began to snow in Chicago. The Cap'n took off for Denver. I sat in Baltimore. Three hours late, we took off, and I arrived in Chicago which had only a tiny fringe of snow on the ground. Bah!

I had missed my connection to Seattle, but the next one was in six hours. I had my oxygen concentrator, my meds and my computer and phone, so I was in reasonably good shape to occupy myself for a few hours. I was able to call the Cap'n and text-message him, keeping him apprized of my situation.

We decided that he would go get a hotel room near the Seattle airport, get some sleep and I would call him when I knew what time I would be arriving. He would ride the shuttle bus back to the airport (since, after all, I had rented the car in my name, he couldn't pick it up), fetch me, get a car, and we would get a few hours sleep, since he had to give his first presentation in Vancouver at 1 pm.

Six hours came and went and still I sat there. At about 8:30 pm, I finally got a boarding pass for the flight to Seattle, and we left about 10 pm, arriving in Seattle after midnight. I walked the length of the airport (wheelchair service after midnight?? fugeddaboudit) and spotted the faithful Cap'n waiting for me. He grabbed my bags and we headed to the Hertz desk.

Hertz (smartly, on many levels) had decided to do server maintenance at midnight Pacific time on Sunday night. Which was when we were trying to get our car. The nice lady (and she was extremely nice) had to hand-write our rental contract, instead of spitting it out in ten seconds, it took closer to an hour to get it done.

We got into the car, and went to the hotel, which was really lovely as next-to-the-airport hotels go, and I stripped out of my nasty airport-soiled clothes and took a shower and took my meds and fell in bed, TWENTY-FIVE HOURS after we had been alarmed into action the day before.

We slept for about six hours and then took off for Vancouver. I had realized during my long sojourn in Chicago (nine hours gives you plenty of time to think) that I had failed to pack a coat. I assured myself that I could buy something in Vancouver.

The drive was really lovely, that typical northwest overcast, tall mountains still snowcapped, logs floating in waterways, lots of boats.

We were using my phone and its navigation system for our mapping, and we were successful until we passed the southern sections of Vancouver. Then I discovered that there is no CDMA coverage there. We have a GSM phone, but it doesn't have the nav capability, and the Cap'n 's gummint phone isn't allowed to have any external apps... so we were sorta without direction. Except, the Cap'n had actually been to the conference, in the same hotel, before, so he had some sense of where it was.

We did take a wrong turn, and had a lovely tour of Chinatown. Finally, we found the hotel and I quickly determined that, yes, I would be able to find something to wear in Vancouver, for in the lobby were a couple of stores I recognized, St John and Gucci. Yes, indeedy.

This is the nicest hotel I've ever stayed in. The concierge desk has yellow labrador retrievers you can check out for a walk. The Cap'n wanted them to come sleep with us, but I begged off. There are bowls of apples everywhere for your snacking delight.

I did check out Gucci and St John, but there was a third store which was more the right direction, however, the first thing I saw when I walked in was a ranch mink shawl, dyed pink, for $2500.00. Which, in case you didn't guess, is generally out of my price range. And taste. However, I headed for the mark-down table and found a chocolate brown cashmere wrap, which was half off, but it WAS half-off, and it WAS Canadian money, not like real money, so I bought it. And it is gorgeous, and light as a feather and very warm at the same time. And I told the Cap'n that in the case of my untimely demise, he should save it for the next Admiral, for she would also appreciate its loveliness.

I walked downtown in it, down to the city centre where they were having a Cherry Blossom Festival, without actual benefit of cherry blossoms, but with a variety of Japanese drummers and Okinawa rock n' roll.

Despite Chicago, it was a fun trip, and we got to see a bunch of folks we hadn't seen in a long while, folks whom I had met in Washington at various times.

We came home after the first of April, from snow in Vancouver to sunshine at home. We took our first sail of the season toward the end of April, knowing full-well that it was a great possibility that the weather would be horrid. We lucked out: it was spectacular. Nearly 90 degrees, but the water is still in the 50s and 60s, and the breeze coming across the water was sublime. We went to Oxford, MD (near Cambridge, strangely enough), and stayed at the marina there. We called a local restaurant and they came picked us all up for dinner (seven boatloads of us!) in their van, and we enjoyed dinner together. When we returned, and got ready for bed, a thunderstorm blew through with 70 mph winds. We were on the end of the dock, tied on only one side, and the wind hit us abeam (broadside), so the boat was rocking and creaking and rolling, and the Cap'n was skeered but I laughed at him. I'd tied the boat up and I knew it would take more than that storm had to offer to pull us off the pilings.

One of the most fun things to do during a storm on a boat is to turn on the communications radio and listen to the people panicking. I mean, you KNOW that the storm isn't going to last more than ten minutes, and you'd think these guys were with George Clooney in the north Atlantic.

And this one was even better.

In many of the mid-Atlantic towns, the street closest to the water is often named 'The Strand," which I think is one of the coolest addresses one can have: "12 The Strand, Oxford, Md." And Oxford is no different. The Coast Guard maintains a small office in Oxford. It does not appear to be the desired station for the Kingspoint valedictorians compete for.

In the midst of the storm, while we were rolling and creaking, across the radio came a call from a sailing vessel to the Oxford Coast Guard station. After two or three calls, the station answered, and the sailing vessel said "Look, I'm anchored right off The Strand in Oxford, and a motor yacht has come loose and is drifting toward the rocks. It just missed me by twenty feet or so, and it's going to cause some real problems out here." Silence from the Coast Guard station, then a very young voice asks "Do you have a GPS position for your vessel, sir?" The sailing vessel replied, not without some disgust, "I told you I'm anchored off The Strand. My navigation equipment is turned off right now, but if you want, I can certainly turn it on again, but it will take several minutes to do that." More silence. "Okay, thank you sir for your GPS position."

The sailing vessel said "Okay, I'm turning on my GPS, but in the mean time, I'm two blocks from your office and you could come out here and see what the problem is before I get enough signal to give you a position." Silence. "Do you have your GPS position, sir?"

More silence. Then the young Coastie said "Sailing vessel, do you see some bright lights on the shore? " The man in the sailing vessel said "Yes, your headlights are shining right on my boat, and the one that's loose is that one over by the rocks on my port side!"

I half expected the Coastie to announce that he couldn't go outside because it was raining.

Anyway, all's well that ends well, the motorboat didn't go up on the rocks, although our pal Tom had his dinghy flip, and drenched his outboard, and lost his oars. Quel dommage...

We did a Memorial Day sail further south, and had a good time. We made stops in both the Little Choptank and the bigger Choptank Rivers, then sailed home on Monday. No excitement, but a treat of Matzoh Brei for breakfast on Monday morning... a "stone soup" sort of arrangement where one boat had matzoh, one had eggbeaters and one had a Vidalia onion. Yum, YUM!

I have my own batteries on the boat, so I no longer worry about not having enough oxygen for sleeping "on the hook" (on the dropped anchor, rather than at a marina with electrical power). I experimented with the length of the batteries with both the oxygen concentrator and the CPAP device, and neither of them came close to draining even one of the batteries while plugged in all night. Further, we have gotten another television which is AC/DC so if I want to watch TV while on the hook, I can do that, too!

My health is reasonably good, I will have another echocardiogram in August, maybe a right heart cath to get into a new study this fall, but so far, so good.

The March Report

2009-03-07T13:03:00.000-08:00

I'm okay.

In January I had another sleep study to study the dental appliance we bought last year to cure me of my mild sleep apnea. It cost a house payment and a half, and no, it was not covered by insurance.

My sleep study indicates that not only is it doing no good, I'm actually a little worse. They did not turn on my oxygen during the study to see how low my oxygen would actually go, and it went to 67%. So, I get another sleep study in April, and probably do the C-PAP thing. Ugh.

I lost my friend Anne Caesar in February. Anne was a PH patient with scleroderma, a physician, had a wicked sense of humor, was Greek to the core of her bones, and I miss her awfully. Remember Bruce, her husband, as you will. He was her caretaker and her enabler for the last few years, they were necessarily inseparable, and he is having to find a new way.

Now, I'm going to say something, and those who have ears should hear.

Life is short.

There is some need, in some folks, to complicate their lives. To invent crises, or persecutions, or to simply waste the lives they have enjoying their maladies, celebrating their sickness, creating a career of victimhood. They invent complication, and drama, and make public demonstrations of their righteousness, and how they have been wronged.

I reject this.

I deal with my disease, and I try to help others deal with theirs. It is not my focus (despite what this blog may look like), and I refuse to enable this in others.

It reminds me, not attractively, of middle-class women, sitting in their Laura Ashley living rooms, declaring their solidarity with the oppressed masses due to their own oppression by male hegemony.

Utter bullshit.

Sorry, gang, but when you decide to play your games in public, making dramatic entrances and exits announcing your victimhood and oppression, I have only a couple of words for you.

Grow up.

Happy New Year!

2009-02-07T15:16:00.000-08:00

Sorry it's taken me so long. Many things going on.

I quit my job on New Year's Day. About three weeks before, the CEO of the company I worked for, who had spent the last ten years being as demeaning, condescending, and patronizing as is humanly possible, finally hit a new low and told me that I had been "a charity case since I had walked in the door."

Everyone who knows him, and who heard this, thought it to be completely within the range of believeability, and the first word out of all of their mouths was "Napoleon."

So, Josephine has chewed about all the fun out of that gum possible.

So, as of 2009, I am DC HelpDesk and have never been happier.

The thing is, the technology has finally caught up with me, so I can do remote computer aid and repair from my recliner, on the days that I feel like doing that. Before now, it was necessary to be part of a large organization to have secure remote connection to other computers, but now it is possible to do this as an individual. Whoopee! I have a couple of customers already, and it's really very nice to be able to schedule around doc's appointments, naps and other things that life throws in my way.

This also means that we're having a little less income, but we're behaving on a budget and so far, so good.

We spent Christmas in Massachusetts, also our 25th wedding anniversary. We spent some time in Old Sturbridge Village, and with my family closer to Boston. It was VERY fun and actually the best holiday we've had in years.

I'm now helping with another PH support group in our area, with the inability of the former leader to continue, so planning for two isn't much different than planning for one.

My PH is actually doing rather well. My doc told me that I could use oxygen "at my discretion," so I still sleep with it, and use it in the gym, and later in the day when I'm tired, but not much else. I now own my portable concentrator, due to the changes in Medicare and the insurance companies following suit, so this will actually make travelling much easier for me. My oxygen concentrations were getting so good that the insurance company was actually questioning whether they would pay for my oxygen any more, so now that I don't have to worry about them, I can just cut loose. Also, the FAA has changed the rules so I don't have to notify the airline that I'll be using the concentrator, effective in March.

If I am very lucky, I will get to accompany The Captain on a business trip to Vancouver, BC in March or April, and I will be very pleased to do so, since my pal Jas lives nearby on Victoria Island, and we meet up, chat and do girly things. Like margarita therapy...

More later...

Intergalactic Pulmonary Hypertension Blogging Day

2008-11-18T19:35:00.000-08:00

Today has been declared PH Awareness Blogging Day.

I am very tired. It's been one of those days.

Tomorrow will be a better day.

I have three pals in the hospital because they have Pulmonary Hypertension.

Let's find a cure so that so many very young, vital people don't have to die.

Comfort Food

2008-11-05T16:27:00.000-08:00

On Friday afternoon, I have to go to City Hall and pick up a Proclamation from the mayor that it is officially Pulmonary Hypertension Awareness Month in our town. I'm getting a couple of the grrlzz from the PHA national offices to come down for the photo op, and maybe my co-group-leader, and my husband armed with camera.

The Cap'n has some sort of bug and spent the day in bed today, but has arisen sufficiently to enjoy a bowl of chili and watch some tube.

And this weekend, our support group meets and I'm making a big pot to share for lunch.

If I do say so myself, I am a chili phenom.

Now, you must realize that chili is the ethnic cuisine of the Southwest. The headquarters of the International Chili Society is falsely located in San Juan Capistrano (wonder if they can make Swallow Chili?), California, when we all know it should be located no further west than Albuquerque.

So, when I make chili, it is in the manner of my ancestors. In fact, I send off for my chili seasoning because one cannot get it on the east coast. The Cap'n will often procure me some when he goes to the homeland, but when he cannot do so, the internet has become a mighty help.

I make chili in two-pound batches. Two pounds of lean lean lean meat, beef, or turkey, or bison, or venison, ten ounces of some sort of tomato stuff, and spices. This is what goes in chili. No beans. Beans may be added later, piled on top or under the chili, but no beans should be simmered in the chili. Ewww. Makes me shiver.

Tomato stuff is the great variable. One may use the generic canned tomatos, or Ro-Tels with their varieties of added chiles, or fire-roasted San Marinos...or if you're just flat broke, a thirty-cent can of generic-brand tomato soup will work.

In the spice department, one may add things like smoked paprika, or chipotle powder, or extra cumin, or even coffee, cocoa or chives. I've done all those things at one time or another.

But for me, chili is the true comfort food. The only other thing that compares is turkey and dressing in the comfort department.

In my town, there is one chili parlor that does a fine job. When I cannot, they always can. At one point they had an item on the menu that I tried, enjoyed and cannot ever do again. It was called "Atomic Fred." "Fred" was a quarter-pound fat short hot dog with chili, cheese, onion and minced fresh jalepeños. Holy cow. "Fred" gave me gastrointestinal delight (or excitement) for about three days. I can no longer do this. But it was magnificent. (I think they have removed Fred from the menu, perhaps due to fear of lawsuits.)

The day before election day

2008-11-03T17:48:00.000-08:00

I voted a couple of weeks ago. When you show up at the election board with a hose in your nose, they don't even ask, but just hand you an early balloting form when you walk in the door.

I don't really think it will make much difference who wins the top office. The congressional elections will be much more interesting. Congress is so screwed up that most of the federal agencies who were required to submit their budget requirements early this year (like before March) STILL do not have their budgets approved and are operating on continuing resolutions, which means that they can't do any project planning, because they cannot spend any money beyond what they spent last year. This screws up things on all sorts of levels. For example, if there is mass end-of-the-year retirements, the agency often cannot fill those positions. So, if you want your food inspected, or your drugs tested, it's just not happening. It would be magnificent if all the incumbents were defeated and lots of guys and girls with no preconceived ideas about how stuff should get held up for silly reasons.

The nicest thing about election day is that it means that Inauguration Day shall follow, and this year, it comes the day after the MLK day holiday, so I shall have a four-day weekend. Nice of the United States to provide me with this.

But the most interesting thing is that day-after-tomorrow, many, many houses in our neighborhood will go up for sale, and they will all sell before January 20th.

Required PH Content: Almost Every PH Patient Goes Undiagnosed For Some Years, Because Doctors Never Think About Testing For It. Warning, Opinion follows: I think it's because the patients are mostly female, and doctors don't tend to take female patients as seriously as males.

So, when we last spoke...

2008-11-02T16:47:00.000-08:00

I was talking about June, and t-shirts and such...

We didn't go on a real vacation this summer. We did go to the boat a few times, did a little sailing, but not as much as we would have liked. The first part of the summer was very hot and rainy on weekends, and then in August the weather turned cooler and delightful, but the Captain's schedule got very tight and left us little room for sailing. But we're leaving the Good Ship in the water this winter, so we can go over occasionally and spend a chilly afternoon, with the little space heaters doing a little something with the penetrating chill.

We did take the beagles over one day. Pedro is afraid to leave the boat, and is afraid to be picked up, so when you try to take him off the boat, you suddenly find yourself straddling the land and the sea with a wiggly 40-lb bundle. It's not good.

On the other hand, Daisy likes to leap for the dock. She has not figured out that sometimes the dock is closer to the boat than other times, and three times now we have had to fish her out of the bay by her slip-knot leash. Picking her up by the neck out of the water does not appear to faze her in the least.

So, in any event, my pulmonary function is improving, or is at least improved, to the point that my readings, dear reader, are as normal as ANY of yours, with a few tweaks. My de-saturation is almost non-existent, except in cases of extreme stress (like carrying heavy things up stairs). My doc has essentially told me to wing-it with the oxygen, so I have been going without more and more, so far without incident. I went to church this morning, sang out loud, upped and downed and all-arounded with no symptoms whatsover UNTIL I went into the restaurant at brunch and began to get a big flashing blue and orange spot in the middle of my vision. I have those most often when I am carrying things into the office from my car in the morning. I wasn't carrying anything at that time, so I'm not exactly certain what made me do that at noon.

Church was a little emotional today. All Saints Day (transferred from November 1) is the day they read the necrology, the list of all those who have died in the last year. My friends Loren and Viola, and most of all my friend Amy, were on the list, and it was all I could do to hold it together.

My friend Amy was diagnosed with melanoma a little before I was diagnosed with PH. She had surgery, treatment, and was treated with all the new meds, but last spring she got into a Phase I study at Johns Hopkins, and I knew, and she knew, that they only people accepted for Phase I studies were the ones for which there was no other hope. She looked great to the end, but two days after she graduated her oldest son from high school, and they had gone to Martha's Vineyard for a vacation, she lost her battle. She left her three sons and dear husband. I get survivor guilt every time I walk into our church, and it is neafly more than I can do. I had a friend who lost a child once, and she said the pain doesn't go away, but it does become expected.

And that's where I am. I expect to hurt when I see her sons, her husband, her house.

I received word that my friend Teresa died of PH this morning. Teresa was the daughter of an old friend, who was diagnosed with PH just after I was. Teresa had a variety of physical and emotional problems that made treating her PH almost impossible, and she decided a couple of weeks ago to stop her treatment.

My friend Sheila lost her father this week. My friend Rose lost her dad last week.

May light perpetual shine upon the souls of the departed. Amen.

2008-11-01T16:28:00.000-07:00

Okay, so I have been negligent. Sue me.

When we last chatted, O Theophilus, I had just had a new set of pulmonary function tests (PFTs) and a right heart catheterization (RHC) and everything looked rosy.

Well, everything remains rosy!

In June, the Captain and I attended the Pulmonary Hypertension Association's International Conference which is a biennial event, this year in Houston, Texas. Now I ask, whose brilliant idea was it to haul a bunch of pulmonary patients to the Gulf Coast in June? It was hot, it was humid, and when we got off the airplane, and stepped out of the terminal at Hobby, the first thing I saw (at four in the afternoon) was a lightning bolt nearby. Having been gone from Florida for ten years now, I had forgotten the ubiquitous summer storms that form on the land and head for the sea every every every afternoon about four o'clock.

I met many of the folks who I knew only from here in the cyber-world. I discovered that I liked ALL of them.

Sometimes, when you only know someone from conversations online, when you meet them in the flesh, you're a little disappointed because the person you had created in your own imagination didn't quite measure up. THIS WAS NOT TRUE FOR EVEN ONE OF THE FOLKS I MET IN HOUSTON!

I had an inkling of that before we left. My pal Annette and her charming husband Rod had a couple of days in Washington, away from their home in Omaha, before we both were expected in Houston. We went and kidnapped them from their hotel and took them out to breakfast and a quick tour of Alexandria, then dumped them back at the hotel so they could take a noontime cruise up the Potomac. And they were FABULOUS! Made me know that Houston was going to be wonderful as well.

And another reason that I was a little eager to go is that I had, once again, agitated in an unseemly manner, the rabble into a rouse. One night we were chatting in the Pulmonary Hypertension Association's chat room, and a newly diagnosed woman said "I'm changing doctors. My doctor doesn't like me. He wrote on my chart that he thinks I'm an SOB!" We all laughed, and explained to her that SOB was shorthand for "short of breath," in the same way that dx is diagnosis, px is patient, rx is prescription, etc. So then, we began to talk about what a bunch of SOBs we all were! And thus was born...

The SOB T-Shirts.

I went to a t-shirt website and started playing, and came up with a black t-shirt that read, in small pink letters, "I'm a little" and in HUGE Purple Letters "SOB."

Then I made one for the Captain, that said "Someone I Love is a Little SOB," and one for all of my medical folks that said 'EVERYONE I Know is a Little SOB." And I posted a picture of them on the PHA Message Board.

And I sold over two hundred of them.

And they were all worn on Friday during the PHA Conference. That was about 20% of the attendees. In the linked picture, you can see me in a conference on travelling with oxygen where I was a panelist, and you can gaze through and find a LOT of pictures of a LOT of people wearing a LOT of black t-shirts. (The ladies depicted are the nurses and respiratory therapists from my PH clinic. Oh, and that's me being the poster child. A long story for later.)

All proceeds paid for the Northern Virginia PH Support Group's Website.

A new organ recital

2008-05-14T14:00:00.000-07:00

Last month, I had a right heart catheterization and the results were astoundingly good. At my diagnosis, my right heart pressure was 120/52. This time, it was 41/15, with a mean of 26, which is completely normal. You may not have pressures this good.

Today I went to the PH clinic for my quarterly visit. In addition, I went to the pulmonary lab for pulmonary function tests (PFTs), which I had not had since August of 2006, shortly after I began treatment.

The results were awesome.

First, I did the routine six minute walk and I walked 450 meters (1476 feet), Doctors are generally pleased at anything over three hundred meters. And I did it completely without supplemental oxygen, on room air, and I never de-saturated below 94%.

Compare this to one in November 2006, where I walked about 1400 feet, but desaturated to 82% on room air, and dropped below 88% (the baseline for supplemental oxygen) at only 1:27 minutes into the walk.

Now, this is very good. However, without the oxygen, my chest hurt like a sumbich. The respiratory tech who did my tests, my pal Patty (she works in the gym where I go two days a week), kindly turned on the oxygen at the end of the walk so that I could douse the chest pain. And when I bent over to pick something up, that familiar pain of my strained pulmonary artery reminded me of why I was there. I tend to think that when my test numbers are good that I'm completely out of the woods. My body kindly explains otherwise.

Other tests were performed as well. The Forced Vital Capacity (FVC) is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired. FVC is usually expressed in a percentage of an expected outcome based on your age, size, etc. This tells whether your disease is restrictive (PH) or obstructive (COPD). My percentage in 2006 was 75. Today it was 96, which is COMPLETELY NORMAL!

The FEV1 (Forced Expiratory Volume in One Second) is what it sounds like. Two years ago it was 70%. Today it was 91%, again completely normal.

The Lung Volume actually are just what they sound like, how much air you can take in. The results of the test (TLC) are expressed as a percentage of a predicted value, based on age, size, etc. Two years ago, mine was 66%, today they were 83%.

The only thing that didn't make a dramatic improvement, unfortunately, is the DLCO, the measure of how well you pass gas (no cracks) through the alveoli to the capillaries. This measure is the thing that makes them believe that my PH may be related to scleroderma. Two years ago the DLCO is 42 (which was actually up from 32 at my diagnosis in January of that year), and my DLCO now is 46. Better, but not like the others.

So, what does this all mean?

In three months, the doctor wants me to come back and do another set of PFTs and a CAT scan, to make sure that the PFTs hold true, and the CAT scan to determine if I have any lung scarring from the scleroderma. (Also the CAT will check that pesky pericardial effusion that I've been watching since its dramatic debut).

If the numbers hold good in August, we will then discuss reducing some of my medications.

This is the first time in over two years that I feel like I have any breathing room.

I actually saw two docs today, one who is part of an exchange program with the National Institutes of Health (NIH), the other is Dr. Ahmad, a partner of Dr. Nathan, my doc of record. The doc from NIH said that looking at my heart cath results from last month that my improvement was "unprecedented." He actually said that word! He said that people don't recover from PH this way.

The reason they want to wait for the CAT scan is that scleroderma can greatly complicate PH symptoms and treatment, and they want to make sure that I don't have any signs of connective tissue disease in my lungs before they take their foot off the medication accellerator. And I'm fine with that.

I do feel particularly lucky today. Perhaps I will buy a lotto ticket.

Mid-Life Crisis

2008-04-22T07:37:00.000-07:00

So you know that the Cap'n wants my car. Or more generally, he wants something sexier than a Volvo. He is a pilot, and pilots have certain unique needs. One is watches. Most of them very large. I cannot tell you how many watches that my husband has gone through in the last twenty-five years, and what is he wearing now? A self-winding Hamilton that he bought before we were married. Oh, the others are around. I learned early not to buy him nice watches, because he likes to take them apart, so many of the other are around, disassembled, in drawers and on trays, in various parts of the house.

So, he has been looking for a Jaguar XJS for some months, maybe years. He says there comes a time in a man's life that he needs twelve cylinders. I told him that between my six and his six, he already has twelve. Evidently that doesn't count.

Last weekend, we went to visit an1985 gray XJS HE in a neighboring town. It was owned by a former Jaguar mechanic, who had kept the thing in really very good shape, replacing parts with OEM parts; even the muffler is a British Leyland and not a Midas. It had not been driven in five years, but it had been started and moved weekly. It had no tags, it had no inspection stickers, it had no insurance. And the Cap'n loved it.

So, he bought it, and delivered it to his trusty mechanic José, and took the afternoon off for tagging and registration and such. He hopes to drive it to work later this week.

This is the kind of car that I used to call the "sorry about your penis" sort of car. I suppose I will have to stop doing that.

We are now a two-Jaguar family. The cost of both cars put together does not equal five figures. The Cap'n's philosophy is that when buying a car, one may either pay a bank or pay a mechanic. He prefers paying the mechanic.

Bat Mitzvah

2008-04-03T19:39:00.000-07:00

My brilliant niece was called to Torah as Bat Mitzvah last weekend.

All the relatives, goyische and not, all showed up.

She had two great-aunts and great-uncles named Jack. She has two aunts named Ellen, two aunts named Carol.

But only one has a good ship.

She was brilliant, and magnificent in her torah portion, and in the haftorah as well. Her mother was brilliant for the half-second of blessing that she got through before losing her breath, her voice and her tears. Her father was appropriately amusing.

The party afterwards was a blast, and we were honored to light one of her candles on her cake.

Just to demonstrate what a good patient I am, I offer evidence that I did a Ventavis treatment just after dancing a hora.

To further demonstrate what a good patient I am, I had my annual right heart cath the week before we left, and my pulmonary artery pressure is down by two-thirds what it was at diagnosis! Still nearly twice what it should be, but way, way better than it was a couple of years ago!

We drove to the occasion in the mighty Jaguar. The Cap'n again lusted for it. He cannot have her, however. We navigated home using the kewl little Bluetooth GPS receiver that beams our position into the phone, which then actually gives us oral directions from a lovely feminine voice I've chosen to call Genevieve GPS. The Cap'n argues less with Genevieve's directions than he does mine.

My Confession

2008-03-06T08:11:00.001-08:00

Bless me Father, for I have sinned.

It has been an eternity since my last confession.

I have envied, and I have not loved my neighbors as I love myself.

Yesterday, I had two appointments. One with a dentist who is going to make me an appliance to keep me from having sleep apnea. One of my co-workers asked if that meant that my tooth would get a refrigerator. I told her I hoped not.

Anyway, I went to the dentist and he talked for two solid hours, never looked at a tooth, never looked at a gum, just talked about what these appliances are about, and that re-designing one's airway can do wonders, even cure autism. I'm sure that this may be true, but it will be a deep disappointment to those who are convinced it's caused by vaccinations. He has a website if you're actually interested.

The only time he actually touched me was when he took my check. Oh, and I have another two hour appointment next Wednesday. Maybe he'll look at a tooth then. Or maybe not.

Then, in the afternoon, I had an MRI for the sciatica I have been experiencing since returning from my father's funeral. If you have never had the pleasure of an MRI, let me help you prepare yourself for it. Lay flat on your back, and have some one shove you under your bed, then ask them to begin sawing 2 x 4's with a circular saw nearby. You may not move. This will go on for at least twenty minutes.

They didn't tell me it would take twenty minutes. I figured the folks that I heard in there for twenty minutes were getting their whole bodies done, not just their lumbar spine. Oh, NO!

I laid down on the track (just like the track I laid on for a CT scan, a V/Q scan and a thallium stress test). They gave me yellow foam earplugs. I observed that the aperture of the tube was rather small. They shoved me into a tube that was about the same size as a coffin. I kept my eyes closed the entire time, because I knew if I opened them I would freak clean out. Then the noises started. Like jackhammers, and steam shovels, and all manner of noisy machine sound. I was laying with my hands clasped across my belly, and I made the mistake at one point of flexing my hands, and my knuckles grazed the top of the coffin. Finally, they stopped. I breathed easier. A voice came from behind me, "Are you okay, ma'am?'' "Yes! Are we finished?"

"No, ma'am, we have about ten more minutes."

TEN MINUTES??? TEN MINUTES IN THE BOWELS OF HELL??? WHAT DO YOU THINK I'M MADE OF????

"Okay, sweetie, we have about five minutes, then I'll talk to you again." I screamed "WAAAAAAIT!!!" but the machine sounds started again. I screamed, I cried, I sang parts of Mozart's Requiem. Nobody could hear me, so who gave a damn if I got the lyrics wrong.

"Sweetie" came back up and said I had about three more minutes, she was going as fast as she could. She was lying, I know, but at least she had the human decency to lie to me in a way that I could not verify, since she had taken my watch.

And then it was over. And the tube vomited me out, like Jonah.

Very slowly, I sat up, recovered my spectacles, and walked very slowly back to the dressing room, where I replaced my trousers, my bra and my jewelry. My precious timepiece.

I walked out to my car, and opened the passenger door to put my oxygen in the front seat. About that time, a man, older than me with a small, Asian female companion, walked out and said "You opened your door against my car." I looked at it and said, "No, it's not touching your car." He said, from twenty feet away, "I'm looking at it." I stood up and looked at him and said "No, my ass is between you and the door, so what you're looking at so intently is my ass, and if I were your lady here (gesturing grandly), I'd be wondering why you were looking so intently at my ass!"

I closed the door, walked around the car and got into the driver's seat. He stood speechless.

Lord, keep folks from messing with me after I have had an MRI.

That's all.

Amen.

The Funeral

2008-02-13T08:22:00.000-08:00

The minister at my parent's tiny country church is a high school history teacher. A pleasant sort of fellow, not complicated, but the sort of fellow who would satisfy the needs of a poor, rural congregation.

When my father died, the minister was in bed with suspected pneumonia. My mother said that she wasn't sure he would be able to officiate at the funeral. I told her not to concern herself, that we (my father's children) would be completely capable of conducting a funeral. In fact, I have planned and taken part in a number of funerals, though not my father's, for a number of years when I was studying for ordained ministry. (This didn't happen... long story)

I sent her a proposed outline for such a service. Very broad... like Opening Prayer, hymn, scripture reading, eulogy, scripture reading, hymn, homily of some description, hymn, prayer and dismissal. She replied that she thought that the minister would be recovered sufficiently, and that since he had been a part of their lives for the last 28 years, he would want to be involved, and probably nothing as formal as what I had proposed.

Formal?

The problem is that my mother is genetically unable to plan. Anything. Retirement, weddings, graduations, college, all passed by without any to-do, or any planning. We all mostly put ourselves through college, which is not a bad thing altogether, but we paid for our own weddings, our own graduate schools, our own everything. We also began to contribute surreptitiously to a retirement account for our parents when they were in their fifties, because they weren't doing anything Somehow my mother was incapable of planning (yea, even expecting that they would happen) for any of these life events. And my father was out of the loop on most of these things. He was never actually aware of anything beyond the day-to-day knowledge that we had enough cash on hand for milk and bread. He actually said to me, after being homebound for a number of years, "I never DREAMED that anything like this could happen." Evidently he believed in the tooth fairy, as well.

So, the minster got better and he did the service. My mother's cousin Jack, who come from a family of singers on his father's side, as well as a good number of singers on we, his mother's side, led the singing, and chose some fairly standard funeral fare for this group.

The little church was packed with maybe 200 people. I saw folks I hadn't seen in a lifetime, including a baby I babysat in high school who had just turned 35 on Groundhog Day.

The "tradition" in this community is to open the box at the end of the service for a final goodbye. Not for me. I told my mother as much, but evidently she has to live among these folks and they just would have never forgiven her for leaving the box shut. So, as I saw them opening the box, I exited, stage right.

I went into the tiny lobby, and following me and my beloved husband was my beloved oldest friend, who is good to have around at times like these. We managed to summon enough dignity not to do anything publicly odd, and went around to the side door to greet the souls exiting after their final goodbye. We were goood.

After everyone exited, they loaded up everything and headed for the graveyard. It's a tiny graveyard, overlooking the interstate, and the plots are only $100 so local municipalities have buried some of their indigents there, too. We lined up piously behind the white hearse, and started the two-mile drive down there.

The only landmark between the little town and the graveyard is, sitting on the nearby Interstate, a casino owned by the Citizen Potawatomi tribe. It is the only structure nearby, with a Jumbotron that you can see for miles before you get there. The Cap'n says that it compares favorably with some of the medium-quality Las Vegas casinos he has visited, but since I'm not a casino-person, I don't know. However, Wayne Newton was there on Valentine's Day. They also have something called "Freestyle Cage Fighting" and Vicki Lawrence ("Mama" of "Mama's Family") is appearing in April. It's HUGE. It's GAUDY. And as we quietly, reverently drove by, the lead car, driven by my brother and containing my mother, two brothers, niece and sister in law, turned on their turn-signal, as if to enter the casino and play a little Texas Hold'Em. In the second car, driven by my brother in law, and containing my sister, my two aunts and an uncle, turned on his turn signal as well.

We, being tasteful sorts, did not follow their lead. And we were sure that it would confuse all those behind us.

We were not the worst people at the funeral.

Requiem

2008-02-07T15:26:00.000-08:00

My father died this morning.

I'm glad he's not sick any more. I'm sorry that he spent the last ten years of his life sitting in his house. I think his doctor did not do him a service by looking at him and seeing an old man who needed palliative care, instead of encouraging him to rehabilitate, and teach him to use the tools he did have. Instead, he told him things like "I'm surprised you're still alive."

I think if anyone told me that, I'd shoot myself, just to ruin their surprise.

He was born in coal mining country. My grandfather was a sometime miner, sometime truck driver, sometime gas station attendant. I never met my grandmother. She divorced my grandfather when my father was a little boy. He was raised by a series of stepmothers, aunts, grandmothers, with a lot of cousins. He lost a sister when she was very young. I have seen one picture of that sister, and she looks like my baby pictures. She had "infantile paralysis," which can actually mean anything. Properly, it refers to polio, but she appears to have some sort of neurological deficit, from what one can tell from a seventy-year-old photograph. He has one sister, one half-sister and one half-brother surviving. (His half-brother has a stepson whom I refer to as my half-step-cousin.)

He left school in the ninth grade, and went to work. He joined the Air Force at seventeen, and went to South Korea and unloaded cargo planes. He returned to the US and married my mother in 1954. He took his GI benefit and learned to be an electrician, which he did for most of the rest of his life. He belonged to an amateur band for many years, where he played the guitar and sang harmony.

He like country music, the Dallas Cowboys, Oklahoma football, Kentucky basketball, coconut cream pie, jalepeño peppers, greasy chili, gravy on everything, and the most important activity in his life was attending church. Three times a week, unless there was something special going on at the church, and he'd be there in addition.

He was a simple fellow, lots of black and white, not a lot of shades of gray in his understanding. Nuance and subtletly completely escaped him.

He is already missed.

Time Marches On

2008-02-02T16:27:00.000-08:00

I didn't even recognize the second anniversary of my diagnosis. Of course, I remembered it when I saw the date, but you, my vast reading public, did not hear from me. This must be getting routine.

My dad just came home from the hospital this week, a bit sadly, with care from Hospice. He did not recover well from the cold that sent him to the ICU after New Years, but when I called this morning, he answered the phone. He isn't himself, because he has a hard time remembering relationships (he called my brother "your uncle") and he is easily confused. But he can get to the computer from his bed, and play solitaire, and he can play his guitar a little. I don't know if he can sing. He used to sing constantly. He burst forth in song at odd moments; in the middle of breakfast, at my sister's rehearsal dinner, while driving down the road. Now his wind is too precious for song.

I went to see my doc for my second anniversary present. I saw my doc, my NP, and some docs from the National Institutes of Health, who are working with the PH patients at my clinic. Everything looks fairly normal, 400 meter six minute walk, no problem with my liver, and I appear to be fairly stable. Hooray!

NIH doesn't do a lot of stuff on their campus treatment-wise, but they do a LOT of clinical trials there. So, if you have cancer, or diabetes, or IPF, or PH, you may go there for studies or trial treatments, but not for a long-term treatment. The nice part about it is that they pay for all the tests, so, for example, if I were in a trial there, they would do a right heart cath, and an echocardiogram and lots of bloodwork, and my insurance would not be billed and I wouldn't have any co-pays. However (and isn't there always a however, even if there's no but?), there are some side effects to some of these treatments.

The doc talked to me about taking part in some of the studies. I was asked to be in a study last year, but it turns out I'm too healthy for it. A great reason to be rejected! However, there are some other studies coming up that I may be eligible for. He said that the one he thought would come up next is a mild 16 week course of Taxol (the breast cancer chemo drug). He said Taxol works by killing fast growing cells, which the overgrown endothelium and the plexiform lesions in my pulmonary vasculature are made of. "Oh, by the way, for that reason it may also make your hair fall out." He just kind of dropped that one in passing. I'm just vain enough that this may be an issue. But who knows? Maybe starting from scratch will be an improvement? And maybe I'll find out how gray I actually am... eek!

Today I went to church and helped out with a confirmation class. I made a Powerpoint presentation, modeled after a Jeopardy Game, with answers and questions about the Old Testament. I made the questions too hard for this generation of young Christians in formation. Next week, we'll have the Who Wants To Be A New Testament Millionare? game, and a much easier version.

Afterward I came home and picked up my husband and we had an elegant lunch at a very elegant little joint in downtown Old Town. Today was a busy day for him on the phone, evidenced by the fifteen minute phone call he took in the middle of lunch. Then we went down the street to my new favorite shoe store, and he bought a pair of decent dress shoes (he always buys whatever he can find at the discount closeout store), and sadly, they had a sale on and I bought two new pairs of shoes, one a pair of Icon ballet slippers with Botticelli's Venus on the Halfshell tattooed into the leather, another a pair of Zeeta clogs (cork sole like Birckenstock's), black leather with gold skull and crossbones printed. They look like shoes that I need on the boat in case pirates attack! He got Ecco perforated wing tips. Both of mine were cheaper than one of his...

I realize that I don't think that I've told you that the Captain has a new job. He has worked for more than twenty years for the Federal Aviation Administration, first in Orlando for twelve years, and now in Washington. Just before we went to England in July he was selected to be the manager of the accident investigation division of the agency. The division's territory is worldwide, for US air carriers, and for all US-manufactured aircraft or componants (for example, some of the airplanes built in Canada and Europe have engines built in the US). And he gets beeped and called for every accident or incident of any consequence. Today he was beeped nineteen times before lunch. He doesn't have to respond to all of them, but they do let him know about all of them (by text message at the beep). Sometimes he has to respond, and he has a staff of eleven very experienced, very expert and very respected investigators who are on call 24/7 to hop on the next plane to Timbuktu, if necessary. One of his guys has been in London for the last couple of weeks, looking at the possible causes for the British Airways plane that landed short of the runway at Heathrow. Fortunately, no one was seriously injured in that one, and fortunately for the investigator, he's in London and not in Timbuktu.

We get a lot of phone calls in the middle of the night. They don't scare me anymore. Especially when I see the phone number of the communications center on the caller ID on the phone.

A Christmas from Heck

2008-01-14T10:18:00.000-08:00

My beloved mother has visions of Norman Rockwell every Christmas.

She experienced a perfect Christmas when she was about five years old, and has spent my entire lifetime trying to recreate it. And when it never happens, she is invariably disappointed. And lets us all know about her disappointment.

She has crapped on my Christmas every single year of my life.

So, knowing this, I got on the plane to go home for Christmas. We were delayed at the airport about four hours for departure, so I got to sit and recharge my oxygen concentrator batteries that I would need en-route. I have learned that when you have a large amount of medical stuff you're hand-carrying on the plane, it is easier to get through security in a wheelchair, whether you need one or not, because they then expect the unexpected from you. Therefore, I had a wheelchair at the gate, but no place nearby for my husband to sit. He grabbed a seat elsewhere, and would telephone me from time to time to see how I was doing. Pretty funny, actually.

I keep audio books on my phone to listen to in doctor's waiting rooms. While waiting at the airport, I listened to the first half of Nathaniel Philbrick's "Mayflower," the story of the settlement of New England through King Philip's War. It was very enjoyable, especially since the reader was Edward Hermann.

When we finally boarded the plane, it was a nonstop flight to our destination. I was boarded in the beginning so I could get situated with my oxygen concentrator without holding up anyone else. A young woman came in and sat down next to me. She took my oxygen hose between her forefinger and thumb and said "What's this for?" I told her, and she said, "I understand. I have something called Tetralogy of Fallot, and my pulmonary valve is a pig valve." She did indeed understand; Tetralogy of Fallot is one of the heart problems that causes Pulmonary Hypertension. We chatted about pulmonary rehabilitation, and the gratitude that one gains from having a life-threatening illness. I told her about a young woman of my acquaintance who was very immature and unrealistic about her condition and her prognosis, and what she needed to do to survive. The young woman gave me her business card and said if I felt like it, I could ask her to e-mail with this young woman to give her encouragement. When I looked at her business card, I realized that I had known the young woman's parents in another lifetime.

This is a very small world.

When we arrived, we were twenty minutes behind a small ice storm. The Captain rushed off the airplane to make sure that we still had a rental car, since the rental desk closed 20 minutes after our late arrival. I gathered up all of my stuff, of which there was a ton, and left the plane, debating on whether I needed a wheelchair. Fortunately, the airport terminal is small, and I didn't have far to walk . I got down to the baggage claim/car rental area and discovered that due to the lateness of our arrival, there were no more cars in the class I had reserved. So, instead of an Chevy Impala, we had a Benz CLS 550. To drive on the ice. Forty miles.

We did okay.

We went straight to the hotel. Hotel, you ask? I have discovered in the last ten years that going to my mother's house (notice this is my MOTHER'S house, not my parents' house) is much more tolerable if I have a place where I can go chill out for a while every night. And my own bathroom.

My brother and his family had arrived earlier in the day, and were staying at the house. My sister and her family were to arrive a few days later. My youngest brother still lives at home, at the tender age of 43. They were all staying in a three bedroom house. And actually, that meant that eight people were sleeping in the spare room, the living room and the dining room.

I have a hotel room, I have a hotel room.

When my sister arrived, the baby had a cold. By the time we left, we all had a cold. I stayed in bed for a week. My father, who has advanced COPD, ended up spending a week in ICU, and is still in the rehabilitation portion of the hospital.

I wanted to cook Christmas dinner, because (a) I'm a pretty good cook, (b) my mother keeps complaining about cooking, saying that she doesn't like to cook, and yet she won't turn loose of the reins, and (c) I could go buy top quality things that my frugal mom would never do.

I went into the nearby city to the best grocer in town, and bought a leg of lamb, boned, and fresh herbs with which to stuff it, fresh bread, the makings for bread pudding (including the forbidden ingredient for the whiskey sauce), a dozen or so big Honeycrisp apples, fresh turnips, parships, rutabagas, celeriac, carrots and leeks for a root vegetable roast.

The thing I hadn't counted on is that Mother's oven will not hold an even temperature. I speculate that this may have something to do with her dislike of cooking. So, on Christmas morning, she got up and put nine pounds of butt roast in the oven, and it came out slightly burned and like shoe leather. I put the small leg of lamb in for three hours and it was still raw when I removed it. Same temperature. Oh, and the vegetables came out the same raw way. I nuked them for a few minutes to some result, but still not what I had hoped for.

We have offered to get the range fixed. We've offered to replace it. "Oh no," she says. "I hardly ever use it." DOES IT OCCUR TO YOU THAT THE REASON FOR THAT IS THAT IT HAS NEVER WORKED CORRECTLY???

I have a hotel room, I have a hotel room.

We opened all our presents. Santa brought me a shiatsu massager chair cushion thingy. My husband got fleur de lis cufflinks and studs from Mignon Faget. I bought Mother and youngest brother blood glucose meters so that they had no excuse for not being on top of their diabetes. We bought Dad a radio with a hand-crank generator, so that they could have contact with the outside world next time they lost electricity for three days (which had happened in December).

Aunts and uncles and cousins and friends came to visit. More people in a small house.

I have a hotel room, I have a hotel room.

Once when the baby was screaming, the girls were bickering and the five year old was doing cartwheels in the living room, I looked across the table at my brother and softly sang, "I have a hotel room, I have a hotel room." He made an obscene gesture toward me. By day three, he also had a hotel room.

Two days after Christmas, we departed for home early in the morning, and arrived home in time to go pick up the beagles from their Christmas camp.

I stayed in bed almost all of the next week, through New Year's Eve and beyond. I'm feeling almost normal now.

We've changed insurance carriers and I've spent the last week or so on the phone changing everything over. So far, one of my drugs is four days late arriving, and I had none to spare, so we shall see what the result is soon. I have an appointment with the PH doc next week. Wednesday of this week is my two-year anniversary since diagnosis. I will have my annual right heart catheterization in the next couple of weeks, and a new set of pulmonary function tests. I'm certainly better than I was before treatment. We'll see how much better my numbers are then.

No Apnea

2007-12-19T13:40:00.000-08:00

Evidently.

I did a split-night sleep study last night and it was dreadful. In a split-night, they stop you in the middle of the night if you have sleep apnea and fit you with a C-PAP machine for the balance of the night. They didn't do that for me, so I must not have any apnea. I will have a debrief of the study in a couple of weeks.

The attendant was very pleasant and cheerful. And clueless. The room was a little stuffy, and she cranked the mutha down to about 40 degrees. It was already about 30 outside, and this clinic is in an office park on Highway US 50 in Falls Church, Virginia, with tons of sirens going by all night.

I took my laptop so that I could (a) listen to BBC World Service, which always puts me to sleep; and (b) Send an e-mail if it was really bad. I should have sent the e-mail.

They attached a hundred wires to my head, my chest, my legs, and surely other parts. They stuck a cannula in my nose but didn't turn on any oxygen. They wanted to see how long it took me to de-saturate, and when I did, they'd turn it on.

I turned out the lights before eleven.

At one-thirty, I woke up freezing under the covers. Cold dry oxygen was shooting up my nose. The Viagra and the inhaled treatment I do both cause my nose to be stuffy and runny, and the cold dry O2 had solidified my nose into a brick. I turned on the light summoning the attendant. She came, and I told her I needed some nasal saline. They didn't have any. She opened the door to go look for something and I saw the concentrator, just like mine, but with no bubble humidifier on it! The ambient dew point was about 15 degrees, which means there was nearly no humidity in the oxygen! She came back with some sort of "nasal creme" that you were supposed to put on the inside of your nose. I did so, and blew my nose, and immediately had a nosebleed. I asked her if she had a bubbler for the concentrator, and she said no. I asked if they had a vaporizer, and she said no. I asked her to turn up the temperature as she rearranged my covers and she said "Why, you're sweating! What do you want more heat for?"

Oh.

My.

God.

I'm being tortured. Just waterboard me.

I laid down, completely under the covers so they couldn't see me at all, and built a sort of oxygen tent under there, with the oxygen spewing out of the hose under the covers, instead of up my nose. I'm sure it was fine.

I fell into sort of a creepy, frightening half-sleep, sort of panicky, but not quite.

About 3:30 I woke up again. I rebooted my computer and turned on BBC again, and it put me soundly asleep for a couple more hours. She came in and unhooked all the wires and I got up and dressed and left.

I got home and fell into bed. I went to sleep until about noon.

I'm still feeling lousy, but I'm at least feeling lousy in my own room. With my own dirt around me.

Colder'n a sumbich

2007-12-17T09:11:00.000-08:00

Pink shoes today. Black socks, pink sweater, black suit.

About 20 degrees when I woke this morning. Cold.

This weekend is the last one before everybody splits town for Christmas, and it was chockablock with parties.

Friday night was the Aero Club of Washington's presentation of the Wright Brothers Trophy, this year to The Last Man To Walk On The Moon, Gene Cernan. Nice dinner, nice program, got to wear sparkly long clothes which go magnificently with trailing oxygen concentrator. Sorry. But mine was the only nose hosed in the whole place. I thought about making a skirt for it, but then, no.

Saturday, midday come-and-go, nighttime office party at the boss's house. I hate the one at he boss's house, mostly because the annual "awards" are given, and usually to the undeserving. For example, this year the top prize went to someone who has been with the company less than three months, and is leaving to be re-activated with the branch of service from which they were retired, to a promotion. It was a suck-up move because this person can bring more business to the company, which is a good thing, certainly, but among other things, it means that a fellow who has gotten nothing but rave reviews from his customers for the last eight years, and is doing so in his third language (after his birth language and the language of the country of his first refuge) still has nothing.

We had two other invitations for Sunday, but blew them off, due to fatigue and high winds. Truly, the winds were gusting toward 50 mph, and it was in the 30s, and we were just too whipped to do it.

I have a sleep study on Tuesday to make sure that I don't have sleep apnea. More bondo to the head. I don't think I have sleep apnea, but they keep telling me that I must. So maybe I'll go and hold my breath to make them happy.

Next weekend is the trip to the parental unit's home. I hope it is fun. It has potential. It also has potential not to be. I'm staying in a hotel. I'm doing my part.

Further birthmonth activities

2007-11-13T18:10:00.001-08:00

So, two weeks after my birthday, my brother and sister-in-law, and my brilliant nieces, and my sister and brother-in-law and brilliant nephews, the youngest of which is still sometimes called Soonyouwah, came to play happy birthday with Auntie.

Actually, my brother's birthday is nine days after mine, and they were coming to visit friends in my direction, so it worked out for several reasons.

We had burgers at Five Guys and came home for birthday cake, which we had bought at Buzz. On Sunday, we visited the Edward Hopper exhibition at the National Gallery, then went to the Old Ebbitt Grill for brunch. Then everybody went home. But it was great fun.

Then Monday, Mister Endocrine called and said my last tests showed that I was spilling protein into my urine, and that I should take high blood pressure medicine, even though I don't have high blood pressure, because it's good for the kidneys. Just one more pill for the cocktail, I guess.

Also, for some reason, I'm oxygen de-saturating during exercise at the gym. I have the oxygen bottle turned all the way up for the treadmill and the walking track. And I've scheduled a sleep study to see if I need a c-pap machine...

Life used to be so simple.

A Long Break

2007-10-29T05:54:00.000-07:00

Okay, so I haven't written anything in a while. So sue me.

Lots of stuff going on. Before our trip to England, I was having some gastrointestinal distress. Like I was throwing up. Like every day. Okay, maybe not EVERY day, but multiple times per week. And I wasn't sick. It was just kind of a weird, sudden overload sort of thing. And it didn't matter what I ate, or how much.

In early September, I was complaining about this to another pal with PH (and I had made an appointment with the GI guy) and she said that those were the same symptoms she had when she was taking too much Revatio (the PH code name for Viagra). I asked her how long she'd been taking the high dose when she got the symptoms, and she said about 100 days. Wellllll, I'd had my dosage upped in May from 180 mg daily to 240 mg. About a hundred days earlier.

I shot off an e-mail to my PH specialist, asking if I could lower the dose since it didn't appear to be helping any, and it might be hurting some. He shot back that that seemed entirely reasonable to him, and I lowered the dose, and the symptoms got better. But not gone.

I saw the GI guy a few days later, and he said he thought it was probably gastroparesis, which is a semi-paralysis of the stomach caused both by autonomic neuropathy in diabetes and also several connective tissue diseases. Since I appear to have both, he thought it a good bet. So, the only real treatment is eating small meals often.

I have discovered the joys of the hors d'oeuvre menu.

In addition, I visited Mister Endocrinologist and my HbA1c was 5.8, which for those of you who don't know, means that yours truly has blood glucose under such good control such that it's nearly unmeasureably good. So, as a result, he is taking me down off the oral meds for diabetes, because they are both hard on the kidneys and stomach, and upping the insulin dosage. This is a little tricky, but I'm working it out.

Finally, I went to see Mrs Rheumy #1, my old original rheumatologist. I have two telangiectasia. Two. Most people who have them have hundreds or thousands. I have two. Telangiectasia are little red dots, maybe purply, which are visible on the face and hands, especially around the mouth and on the cuticles. They are cause by capillary malformations. They are the "T" in CREST syndrome, or limited scleroderma. I have one on my left ring finger cuticle, and one on the left side of my lower lip. Whatever the connective tissue disease is, I have a very wimpy case of it. Oh, except for the PH part.

I went to her because I was hurting all over, hard to get out of chairs, etc., and thought that it might be rheumatoid arthritis. She says it isn't, that it's bursitis in my hips. Challenging my emerging hula career, is she? She said I need to wear my good shoes and get orthotic devices. I told her I had some already, and she said I needed to wear them all the time. So I had to go shoe shopping (first time under a doctor's order!). And while they didn't have any pink saddle oxfords, they did have some very cute ones that are very comfortable, even with the orthotics.

So now, it is happy birthweek to me. I try to celebrate happy birthmonth, but sometimes that is very hard, so I do make a huge effort to have happy birthweek. When one is born on Hallowe'en, one needs to do something to set the birthday apart from the holiday.

On Sunday, we did the happy birthweek brunch at FarrahOlivia, which if you are a foodie like myself, you will recoginize as the restaurant of Morou Ouattara, who was sadly eliminated from The Next Iron Chef on the Food Network last week, unfairly and undeservedly.

My brunch was simple and wonderful. I had a tomato salad, and this is how it was constructed. On a very thin circle of puff pastry (about four inches around), smeared with a mild goat cheese, cherry heirloom tomatos were halved, topped with a balsamic vinegar syrup and spicy sprouts (maybe radish?) and garnished with a saffron and cayenne flavored salt on the side. Amazing.

The captain had flame-grilled asparagus, topped with grated boiled egg, bacon and a hard cheese (parmesan-like, but not).

I had bacon and eggs, well done but unremarkable, and the captain had a ham sandwich with shiitake mushrooms and truffles and a flavored mayo on the plate. Coffee was very dark roasted and served in a french press.

Delightful!

We have more birthweek (and birthmonth after) activities planned. Stay tuned.

England

2007-08-29T08:41:00.000-07:00

On August 3rd, we left Dulles Airport on Virgin Atlantic, me and the Cap'n, and my brilliant younger niece. We arrived early in the morning August 4th at Heathrow. I would like to throw in a small kudo to Virgin, because they handled me and my needs extraordinarily well. US air carriers either do not provide supplemental oxygen, or charge $100 per leg additional to provide you a bit of gas. Virgin Atlantic takes their required-equipment portable oxygen bottles (called walk-around bottles), which they must have for crew members to be able to move freely around the cabin during depressurization , and adds a pulse conserver device to the top, and one small bottle lasted me the entire eight-hour flight at 2 lpm. And they did this for FREE. Bravo!

We proceeded to rent a car which was disadvantaged by having the steering wheel on the wrong side of the car, and a six-speed manual transmission which insisted on being shifted with the left hand. It was okay, because it appears that the English drive these malformed cars on the wrong side of the road as well.

We then proceeded to drive into downtown London. The congestion rules that make you pay a fee for driving a car into central London do not apply on weekends, and at 8 am on Saturday morning there isn't much traffic. We were armed with the Google Map instructions that I had e-mailed to my phone, a Michelin map, and a strong sense of self preservation.

We drove into town, and rather promptly found our hotel in Mayfair. We parked our car there, but weren't able to check into the hotel until the afternoon. The hotel restaurant was still open for breakfast, so we had a touch of tea and toast (and corn flakes). We went for a walk, up Berkeley Street to Berke ley Square. We saw no nightingales singing, but plenty of pigeons. No angels dined at The Ritz during our stay.

When our hotel would let us check in, we did so, and took a nap until six o'clock or so. When we woke, we walked up and down Piccadilly, window shopping, and decided to get take-out from Marks & Spencer and dine in our hotel room.

Early on Sunday morning, we got up and took the doubledecker bus tour which is required with each trip to London. Our hotel was near Green Park, which was the starting point for the bus tour (did I do some planning, or what?) so we trotted over there for the first tour of the day. Hopped on the bus (with tickets I'd bought online before leaving home) and went forth.

We saw the sights.

We went to Buck House, and Liz wasn't home (the bobbys suggested she might be at Windsor, but as we all know, she spends August in Scotland). But they were changing the guard, nonetheless, so we hung out. Very lovely horses. I suppose they stay that way when they're not regularly in the mud.

After we finished the tour, we hopped into the malformed car and headed north. We were on our way to visit our friends Tim and Sally, (hereinafter referred to as our generous host and hostess) who live in a town outside Manchester called Wilmslow (which I liked so much, I keep looking at the realty ads for available properties there). We drove on the wrong side of the road up the highway, past Birmingham and Coventry (where they make Jaguars, so we bowed profoundly as we passed through). We arrived at our destination using only our map and directions that our gracious and lovely hostess had e-mailed me a few days previous.

They welcomed us with open arms! (Lucky us! What if we'd arrived and they'd taken us into White Slavery??) We rather decompressed and hung out. The Cap'n and our gracious host began their week-long course in the finer points of cricket, with a supplemental thousand-page-book of rules serving as their sacred text. UK was playing India in a test match and were losing their tails. They took this as a learning experience...

On Monday we visited the Manch ester Museum, the regular home of the Lindow Man, who was unfortunately on holiday in London during our stay. Nonetheless, there were a variety of stuffed animals and dead Egyptians to greet us.

We also went to the Manchester Airport. Not to the terminal side, but the backside. Airplane watching is a sport like birdwatching in England. Folks collect the registration numbers of airplanes they have seen, and there are databases tracking where these airplanes have been sighted. (Rather odd, imho.) But, in the viewing section at the Manchester Airport, they have one of the original BA Concordes parked, and on certain days, they give cockpit tours. This was not one of those days, but the Cap'n was more excited because there was a Hawker-Siddeley Trident on display next to it, and he'd never actually seen one of those. (It looked like an airplane to me.)

We took it slow and easy on these days. I tried to remember that I needed to not go full speed all the time, and I was careful to charge the battery in my oxygen concentrator every time we were in the car. I had two batteries, and fully charged, the two of them would last about six hours, so I was generally in very good shape, and never was in danger of being without.

Thinking again, it was slow and easy for me, because I would doze off and nap in the afternoon car rides, while our gracious and generous hostess hauled me around at her usual hundred miles per hour (she is recently released from the Formula One circuit). It was neither slow nor easy for her.

On Tuesday, we went to Wales. Our gracious and generous host is a Welshman, and we went to the sheep farm of his brother, where our host grew up. This was during the hoof and mouth scare, and they could not move their rams (at the lower farm) to meet with their ewes (at the higher farm) to make lambs for next year, and were rather concerned that this might well be disasterous. However, the restrictions were lifted in a few days, so we are hopeful that the lambs of 2008 will be on schedule.

They also raise and show Welsh ponies at the lower farm. Driving up to the house at the lower farm was a bit of an adventure. The road wound up the hill a bit, off the paved road, and became increasingly narrow until there was truly room for only one vehicle, and not a large one at that. At one point we met an opposing car, and had to back up to let them pass.

The Cap'n decided that Welsh was actually English that had been typed starting on the wrong home row. For example, the previous sentence in Welsh would read "Tnd Czl'n cdckcdc gnzg Sdlxh szx zcgjzlly Dnblkxh gbzg nzc bddb gtped xgzfgknb ln ghd sfonb nlmd fls."

We left the farm and went to Castle Conwy, in the town of Conwy, and climbed around. I did not go all the way to the top of the tallest tower (and mostly because the stairs were very narrow and would have been very difficult to navigate with the oxygen concentrator, considering the traffic was two-way). I did, however, go as high as the Chapel in the front end, which was halfway up the tower.

Conwy was built by Edward Longshanks, my ancestor (and probably yours; he seems to show up on a LOT of geneology charts), so my niece suddenly discovered that she's a princess, and not the JAP sort either. I assured her that she was not any sort of princess, that even Liz's grandchildren weren't all princes or princesses. Add to the fact that my mother's maiden name is of Welsh origin, and my grandmother was a Campbell, and Longshanks tried conquering all of them, it's no wonder I'm conflicted.

We stopped at a posh hotel spa tea room sort of place, which was gracious enough to accept us for dinner in our going-to-the-farm-and-castle-clothes. We had a lovely dinner and acted respectably, to our great credit.

Wednesday dawned cool and clear (as did every other day; we were very lucky) and we headed off to the metropolis of Barrow in Furness. Barrow is the birthplace of the Cap'n's grandfather in the 1880s. The drive there is a beautiful one, through the Lake District, near Windemere. Barrow is an industrial town, where Vickers and the British Navy have been building ships (especially submarines) for a hundred years or more. When the grandfather was a child, it was a steel mill town, and indeed, there is a slag heap outside the town as tall as the surrounding mountains.

The intrepid Cap'n and our gracious host found grandfather's baptismal certificate, the church and font where he was baptized and a house he lived in as a child. Pretty remarkable, all told!

On Thursday we visited the Museum of Science and Industry of Manchester, which was very interesting and well done. Since Manchester was the cradle of the industrial revolution, they have mills and engines powered by water, hot air, steam, gas, electricity... probably some powered by captive Americans if you look closely enough. It was very well done and very interesting. It's housed in five or six separate buildings which were originally was the very first train station in the world. My brilliant niece was most captivated by the elaborate setup of Thomas the Tank Engine, an old friend of hers.

I got to have fish and chips for lunch. No mushy peas.

Our gracious and generous hostess is a lay reader in the Church of England, and her parish has two churches. St Bartholomew's is the older of the two, and the current church dates from the 1500's, with a crypt dating from the 1200's accessible from a tiny circular staircase in the sanctuary of the current church.

PS on PH

2007-08-18T18:48:00.001-07:00

A really cool article in the Wall Street Journal....