Life is full of surprises. And stuff.

So, I haven't posted for a little while, because I went to ENGLAND, and it was FABULOUS, but I'll write more about this later.

This morning, we went over to see the boat and maybe go sailing, since we hadn't seen the boat in about a month. It was indeed too windy to go for a sail, so we did some maintenance, and puttering around.

HOWEVER!

As I got out of my car, and fiddled with my equipment (oxygen, backpack, bottle of water, other important items), and Cap'n Bligh got all his equipment together, I stood up, peered down our familiar dock with its familiar boats, and said in an inordinately loud voice, "WHAT THE F*** IS THAT?!?!?!!?!???"


Remember, if you will, that our boat is 34 feet long, with a mast 51 feet above the water. The biggest boat on our dock is maybe 45 feet, with a mast not much taller than ours. What I saw was a bowsprit, (one of those long spear things that stick out the bow of a sailboat) that at its tip was as tall as some of the masts. And masts, taller than anything else by far, with a square-rigged sail at the top of one of them. It was HUGE. It was F***ING HUGE. And it was at the end of our dock.

Well, we marched ourselves down our dock, passing our boat hardly noticing if it was still floating or not, and we marched with our silly mouths agape to see a square-rigged, two-masted, one hundred seventy five foot long ship parked at the end of our dock. On the back it says "Clipper City."


One of our neighbors was on her boat, and she said, "You guys haven't been around for a while, have you?" And I said "What the HELL is this thing??"

She explained that it had come from Baltimore, repossessed by the bank from a guy. It obviously needs a LOT of work. A LOT of work. Clipper City was taken by the bank and they think they're going to get a million dollars for it.

Banks are so silly.

Boats are not investments.

Boats are for work or for fun. They only depreciate.

This one used to give rides in Baltimore Harbor, and the Coasties shut 'em down because the boat is not safe for commercial use. Lots of rust, bad fiberglass over wood of questionable quality, a huge maintenance nightmare, and it needs a crew of ten or so to ever leave the dock.

And the bank is paying our marina about $3,000.00 a month to park it at the end of our dock.

They're not using the pool, or the showers, or the gym, or having coffee and danish in the breakfast lounge.

Maybe next year our rates won't go up.

Welcome, HUGE Friend.

Brushes with greatness

This morning we went down to our neighborhood diner for Saturday brunch, which is a weekly treat. (BTW, our neighborhood diner has a previous brush with greatness all its own; it is the very place where the pretend cops caught the attempted assassin on "The West Wing." We watched the filming from our lawn chairs with coolers, and applauded each take from across the street.)

At the next table was a neighbor who has been a docent at the National Air and Space Museum for over twenty years, who is current not only on the exhibits at the downtown museum, but also on the huge annex at Dulles Airport, the Udvar-Hazy Center. Now, to be a docent at NASM, you have to go through three months of all-day-Saturday training, spend every Wednesday night at refresher clinic, and vow to spend at least 80 hours a year conducting tours and educational groups around the museums. It's quite a commitment. And the odd thing about our neighbor is that he isn't retirement age, which most of the docents are. We'd just decided that he didn't have a life otherwise.

He and his lady friend were sitting at their table, not ordering, because their friends had not yet arrived. We ordered, and got our coffee, when their friends finally arrived. It was an elderly woman from the islands, I'd guess Turks and Caicos, and a young man walking slowly with a cane, and two shiny new prosthetic legs. She was a volunteer from Walter Reed, and he was a patient on one of his first journeys out. He ordered a western omelet and a toasted croissant. They discussed loudly the relative merits of the two museums, and which one was best depending upon what you wanted to see (The Enola Gay is at Dulles; the Glamourous Glennis is downtown), and the differences in what estrogen vs. testosterone wanted to see.

I was in the presence of greatness all around.

And just when I thought it couldn't get any better, Brian Lamb walked in.

If you're not a C-SPAN junkie like my very self, maybe you don't know that Brian Lamb is an interview god. Brian Lamb occupied my every Sunday night for years uncountable, interviewing historians, political scientists and social critics of all sorts on his weekly show Booknotes, which evolved eventually into C-SPAN BookTV channel.

The Captain said he'd never seen me so excited, and he was a little jealous.

I mean, Brian Lamb is to Washington politico-geeks as Paris Hilton is to, well, whoever likes Paris Hilton. He's the top.

I feel so insignificant today. Some ice cream ought to fix that.

Some days you're the bug, some days the windshield...

Tuesday morning at about 7 am, I was driving up to the hospital for pulmonary rehab. I was listening to Mick Jagger sing about Brown Sugar, and driving my Very Cool Car at a Very Cool rate of speed.

Just as I came up to the exit to go to the hospital, The Evil Blue Lights of the State Police began to flash behind me, and I knew I was got.

I pulled over to the side of the road, and immediately grabbed my cannula and turned on my concentrator, while grabbing my license and insurance card.

When the State Policeman walked up to my car, he asked if I knew why he stopped me. I told him that I wasn't sure, but I was certain that he could tell me. I told him that I was absolutely certain that I was supposed to be at the hospital at 7 am, weakly pointing at my clock. (It was absolutely true, too. I just didn't say that you don't get demerits for being late to the gym.) He said I was going 61 in a 45 zone. I told him that was possible.

I looked as pathetic as humanly possible, which, when I'm going to the gym at 7 am, isn't all that hard.

He went back to his car, then returned, and told me that instead of giving me a big expensive speeding ticket, he was only giving me a ticket for "failure to obey a traffic sign." One that said "Drive 45 mph".

Today I am The Windshield.

Let's hear it for cannulas and looking pathetic.

My Father's Day gift.

My father is old.

I discovered he was old about ten years ago, when we drove away from the house after a visit and I burst into unexpected tears. My father was an electrician, and had always had strong hands and arms, and now, he had a constant cough and his arms were thin, and his hands were soft.

He's actually turning 75 in September, so he's not really THAT old.

But he has become deaf, and refused a hearing aid, preferring to have a disjointed conversation and keep the television at a jet-engine level. Unfortunately, he also has discovered the Fox Channel, and has grown opinionated in addition to being rather loud. And it is not unknown for him to burst forth in song in the middle of a conversation, since he can't hear the other conversant, therefore it doesn't exist.

For Father's Day this year, my siblings and I sent them a base station and four cordless phones, since the last time my brother called, my mother had to go through three different phones before she could find one that she could talk with.

I called him on his new phone to wish him a happy Father's Day. He thanked me, and we chatted on. He talked about a little neighbor girl who came to visit, who wanted to try on his oxygen hose to see what his air smelled like. He said that she was a lot like me, that when she walked in, she never asked for a hug. He said he had to convince her that it was a good thing to have.

He said that I never demanded a hug. He said that his lap was always full with another kid, and I never asked because I had been told no too many times already. He said I never got enough hugs. He said that he was sorry for that.

I still have a hard time asking for things. For help, for consideration, for a favor. And that's especially hard since I can't do everything now. I'm getting better but it is still very hard.

All this time I thought it was my fault. Thanks, Dad.

The Second Sail of the Season

Friday night we dumped the dogs at the kennel and took off east.

We hit the boat, unpacked and went to sleep rather early, anticipating an early departure.

Saturday morning dawned muggy, hazy but with a little wind. We left the slip at 9 am and headed north.

The wind never really rose above a couple of knots, so we left the engine running to assist us in our trip up the bay. It wasn't pretty.

At about 3 pm, we reached the Rhode River, and came around up to a small bay across from Mayo, Maryland.

By 5 pm, there were about 40 boats in this bay. A little more crowded that we had hoped. About sundown, a group of drunken powerboaters (stinkboats: sailboats are blowboats) tried to leave before completely securing their anchor. Idiots are so fun to watch.

We set up the gas grill and cooked some lovely pork chops, chicken breast fillets, and veggies. We then desserted ourselves with adult beverages. The Captain chose cheap scotch and cigars; I had Wild Turkey and Diet Coke.

After the sun set, we went to bed, for we were beat.

At about 2:30, I awoke with an irregular heartbeat. I could actually see the irregularity on the pulse part of my pulse-oxygen meter.

I thought very nasty four letter words. I did not wish to call the Coast Guard out to rescue me.

After watching it for a few minutes, I got up and went to the head (that's boat talk, you know).

When I came back, the captain asked if I was okay. Whining, I told him about what was going on. He lay silent for a few seconds, and asked "Do you think it has anything to do with that two fingers of Turkey you had before you came to bed?"

Hadn't occurred to me. Of course it might.

Went back to sleep. Awoke perfectly normally at daybreak.

Either I need to drink more, drink more often, or not at all.

We'll see.

We sailed home on Sunday afternoon, ahead of a cold front. It was very windy and rough, but we got back to the slip in time to be tied up securely when the strong thunderstorms came through. We spent the day on Monday doing boat chores; washing the boat, oiling the teak, cleaning the bilge, changed a pump in the shower bilge, et cetera, et cetera.

First Sail of the Season

It's been too rainy and cold and windy to sail yet, but today was supposed to be sunny and perfect.

It wasn't.

We went sailing anyway.

It didn't last long.

We left the dock at about 10 am, with gentle winds and a slight high overcast. We motored out down the channel, greeting the newly hatched ospreys who were peeking over the nest tops on each of the navigation markers as we went out.

When we got out into Herring Bay, the small inlet where our marina (and others) are sheltered, the wind picked up to around 10-15 miles per hour. Which is fine, not a big deal, but it was gusty. Gusty is not good.

When it's gusty, you trim and set the sails for what you think the prevailing wind direction and speed will be, then the wind shifts and blusters higher, and the trim you set only a minute before is completely inappropriate. When it's gusty, you spend all your time compensating instead of sailing.

When it's really windy, one's sails should be reefed, that is, trimmed downward so that the whole sail isn't released to the wind, but a smaller percentage of the sail area.

Women like to go out reefed. Men do not.

When we passed out of the gusty Herring Bay into the main channel of the Chesapeake, winds of about 35 miles per hour hit, bending the boat over getting the sails wet, the deck wet, the crew wet, and making the boat uncontrollable.

Captain Bligh, my husband, was swearing and struggling. I had the steering wheel turned all the way to the stops on the left and the boat was still going to the right. I told him to start the engine, and for the fist time all day, he listened to me and started the engine. As soon as the engine caught I threw it in gear and slammed the throttle forward. Mind you, throwing the throttle to the firewall on a 23 horsepower diesel isn't exactly the Indy 500, but it give you enough forward movement to give your rudder authority again, so you can steer. And I steered it straight into the wind, while Cap'n Bligh dropped the sails and we went home. Or at least to the dock. We had plenty of piddly little projects to keep us busy for the rest of the day, after our one hour sail.

But it was blustery. One measures the angle at which one is tilting from straight up and down on a sailboat by looking at a gauge that measures heel, or the amount you're leaning. We were up to 35 degrees of heel at one point in our short sail. And on the way back, with no sails up at all, only a bare mast, we were heeled over five degrees with a beam reach (a crosswind to you landlubbers).

And the doctor has me up to 12 Viagras a day now, to see if it improves my twinge.

Life is interesting, ain't she?

How I Spent My Wednesday Evening

On Monday and Wednesday afternoons, I have been attending a pulmonary rehabilitation class, learning how to exercise with reduced oxygen capacity. I have been quite successful in increasing my endurance and learning how to go longer by going slower.

On Wednesday afternoon this week, I had a progress six minute walk, and I walked 1705 feet, or 519 meters, which is about 100 meters further than I had walked earlier in the spring. I went pretty hard at it, since it was a one-shot deal and not trying to sustain anything. I got my heart rate up to 140 at one point, which is higher than I normally go, but not a lot higher. My oxygen got down to 90 percent, and I was breathing a supplemental 3 liters per minute of oxygen, so for you normal people, this would have been pretty exhausting. My body is actually used to it, so it didn't feel all that bad.

When I exercise hard, I have a small sore spot in the upper left quadrant of my chest. I was told some time ago that it was probably my pulmonary artery, since it was already under some high pressure stress, that the additional stress or exercise, or coughing, would make it further stressed. On Wednesday afternoon, it was a bit sore as usual.

When I got home, I picked up the mail, sat down on the couch and flipped open a laptop to look at some afternoon e-mail traffic, when I felt a TWINGE. In the upper left quadrant of my chest, in the same place it hurts when I exercise. It was sharp, it was short, it was instant, it was basically unremarkable except it made me cringe a little.

I wouldn't have paid any attention to it, except that in about 15 minutes, it TWINGEd again. And about every 15-20 minutes, it would do it. Not related to anything like breathing or pulse. Just TWINGE.

My husband came home in about 45 minutes, and we discussed what we needed to do for the evening, and I had another TWINGE. I mentioned it to him, and he immediately thought I should call the Cavalry. I said "It's only a TWINGE."

So, I agreed to call the on-call nurse at the PH clinic and see what she thought. She said to call the local EMTs and have them do an EKG and see if anything popped up, then to go from there. So I called the local EMTs. And they came screaming over the two blocks from the firehouse in the FIRE TRUCK, with all the lights and sirens and all that. All my neighbors came out. I waved at them. I waved at the EMTs. They asked if I was the patient. I said I was. They made me sit down. They did an EKG, and it wasn't remarkable. They were very impressed that I took nine Viagras a day. And I had no TWINGEs while they were there. Not a one.

So, I called the on-call nurse back and told her that we had decided we were going to go get some dinner and if I was still TWINGEing after that, we'd go out to the hospital.

We went out and got into my (wonderful) car. My husband promptly flooded the engine, which he does because he does not know how to treat a piece of machinery as marvelous as Miss Kitty, so I yelled at him to stop stop stop what he was doing. And I had a TWINGE. And another. And I said, "Screw this, let's go to the hospital."

So we drove out to the hospital uneventfully. I went inside and registered at the desk, and they promptly took me into the triage area and did a real big 12-lead EKG, not like the pesky 4-lead that the EMTs had. I chatted with the nurse, who had gout and had to sit down, and he told me to get dressed again and go into the waiting area until they had a proper examination room available in the emergency department. So I did.

When I went into the waiting area, I could not find my husband. I walked all around, looking at every face, but there was no one familiar to be found. Then, I heard a sound. A buzzing, flapping, whining sound, coming from outside. As I craned my neck to see the source of the racket, I saw whirling rotors attached to a Bell 412 descending upon the helipad next to the emergency room. And across the parking lot, I saw my husband, intently observing.

He had heard the discreet "code blue arriving by air, ETA 2 minutes" and gone out to observe this arrival. Since he is the head boy in charge of EMS helicopter voodoo at his job, he felt obligated. And he likes noisy things. And flying things.

It does not matter to him that his poor wife is inside busy dying of a TWINGE.

I told him so when he came in.

They came out and fetched us promptly, and I was moved into room 16, my new home-away-from-home. A nice lady came in and said she was Sue, a registered nurse. I told her I was Ellen, a registered patient. She and another nurse came in and started asking me questions and I answered them in way, way, way more detail than they were accustomed to, so they agreed to leave it to the doctors.

So Young Dr. Jesse came in. Young Dr. Jesse was about 12, I estimate. He claims to have been in the Navy, but I just don't see how that could have happened by age 12 if he also went to med school.

After I explained everything to him, he is leaning in the direction of pulmonary embolism. It is not the direction I would have leaned, but it is nonetheless a legitimate one. PH patients have a tendency toward blood clots and many of them are on blood thinners. I am not one, and I didn't have many of the other symptoms associated with clots in the lungs. However, this was the direction he decided to go, and I was along for the ride.

I told my husband to go home, because when I heard the list of tests they wanted to do, I'd done 'em all before and I knew how long they'd take. He can sleep at the drop of a hat, so I knew if he went home he could get a few hours rest anyway.

Under ordinary circumstances, they do a CT scan with contrast to look for emboli. But, as usual, nothing is ordinary in my world. I'm allergic to the contrast dye (which I found out when I had one once before and the tech said "Did you have that rash when you came in?" and I said "What rash?" and he said "Uh oh."). So instead, they did a doppler ultrasound on my legs to look for clots, a chest x-ray and a V/Q scan, which you breath radioactive stuff, then are injected with other radioactive stuff while they take portraits of your lungs.

The X-ray was uneventful, and the V/Q scan was uneventful.

The ultrasound was not.

The ultrasound tech was a little Filipino man named Gerry, about 60 I'd guess, chatty and grey haired. When the do the sonogram for clots, they take a picture of your vein, then they mash on it and get a compressed view of the vein. As Gerry pressed on my leg, I winced, because, well, it hurts. He apologized.

I was going to say "Oh, I read a book once by a man who was tortured and he told his torturers 'I can stand the torture if you can stand the screaming.'"

What I said was "Oh, I read a book..." and he cut me off and said "By Bill O'Reilly?"

No, I don't think I've ever read anything written by Bill O'Reilly. And I don't know exactly what this had to do with anything. Except maybe it would be torture to read a book by Bill O'Reilly?

Anyway, I don't have any blood clots but it took them until 3 am to figure that out. I called my snoozing husband and he fetched me home and I had a bowl of soup at 3 am because I still hadn't had dinner.

And I'm still TWINGEing. But less often.

Another Great Adventure

The tickets are bought.

My nieces and I have a deal that when they turn ten, we go on a great adventure.

When the first one turned ten, we took her to France to a wedding in Bordeaux.

Her sister turned ten last week, and we're taking her to England this summer. We're flying into London (because Virgin has free oxygen) and driving to Manchester to visit friends, and stopping by in Coventry on the way up or back. But we have no other plans.

Have you any suggestions of fun things to do in England with a ten year old that doesn't entail climbing a lot of stairs?

Porn of the best kind

So, my pal Pooks posted on her blog about bike pr0n, or bicycles for which she lusted.

I tried to make a link to Boat Pr0n but it didn't work.

This one does.

Have you any pr0n you'd like to share?

Spring, spring...

We went to the boat today for the first time.

It was clear and 80-ish and breezy, but still too cold to actually sail. That 80° ambient temperature on the land is tempered considerably when the wind is blowing across 50° water.

So, we cleaned up a bit, blew all the anti-freeze out of the water lines and refilled the onboard fresh water tanks, ran the engine for a bit, repaired a few things, and re-hung the dinghy on the davits off the stern.

I took a nap.

We took the dogs along. They are surprisingly well behaved, though Daisy was discovered standing in the middle of the dinette table searching through the condiment packets on the shelf next to the table. She is indeed evil.

We are tentatively planning to go over next weekend (Friday?) and spend the night on the boat, which is always very pleasant... waking up with the sunrise over the bay, and drinking coffee on the cockpit while the rest of the world gently wakes.

Or it may be too cold yet. Remember, the cabin of the boat is still sitting in 50° water...

My new favorite hymn

Oh, my glamorous life...

Saturday night my husband and I were invited to a private reception at the Australian Embassy in Washington, honoring and introducing a young entrepreneur who has brought her business to the United States. Her company does risk analysis and safety planning for helicopter medical services, something that is sorely needed.

Last time we went to one of these things, the chairman of a high-profile government agency walked up to me and said, "Young lady, your husband is a very smart and important person." It took all that is within me to say, "Oh yeah? So how come he hasn't cleaned out the basement yet??"

So, anyway, we spent most of Saturday getting ready to go to this soirée, and I had to go to TJ Maxx and see if there was anything there for me to wear. I had a skirt and a jacket but I needed a blouse that wasn't black velvet, since it's springtime and not wintery. He, on the other hand, had to put on his penguin suit. And that's all.

So we got all dolled up, and when we walked out our front door, our neighbors applauded.

We got into the Jaguar, which just looks all the cooler when the driver is wearing a tux, and headed across the river and up 14th Street to Massachusetts Avenue, and Embassy Row.

We got to the embassy on time, and he dropped me off and parked the car a couple of blocks away. We cleared security and walked in. And stood. For three hours. In uncomfortable shoes. And ate little tiny food. Crabcakes the size of your thumbnail. Tuna tartare on tiny little crackers. Little Australian lamb chops. Australian wine. American water.

Lots of people there telling me what an important brilliant visionary my husband is.

Presentations were made. There were no seats. My feet felt like they'd been hammered on the bottom. I found the only available bench, in front of a video art screen, a video of waves endlessly approaching the beach and changing color with each wave. I propped up my feet.

My brilliant and visionary husband didn't have that opportunity. He had to go make face time with all these people, who congratulated him (which probably makes your feet not hurt so bad). He went and got the car at the end of the three hours of standing around, and we went home.

We were hungry. We were tired. We had shredded wheat and went to bed.

Oh, I adore my glamorous life.

Spring is Officially Here

My husband is coming home from Australia today. I do not envy him. He has made the round trip in less than a week. That's hard on bodies that are no longer young.

He reminded me of the worst part of flying trans-Pacific; after you have a meal, a movie, and a nap, you wake up and look at the moving map on the overhead, and it says "Arrival in 16h 30m."

Aaaaagh.

Have I mentioned that I have the grandest commute in the universe?

I leave my house and immediately turn north on the George Washington National Parkway, a road that goes along the Potomac from near Chevy Chase all the way down to Mount Vernon, George and Martha's crib.

It is a National Park, so your speed is monitored by the US Park Police. It is also lovely. The Lyndon and Lady Bird Johnson Memorial Groves and Parks and all (I guess it ain't quite memorial for Miss Bird, since she is still kicking..). It is lovely and very well kept.

On the lower portion, near my house, the riverbanks are naturalized with daffodils, and weeping willows casually line the shore. As you drive up, the sun is rising over the Capitol, the Library of Congress, the Washington Monument, the Jefferson Memorial, and this time of year, the cherry trees blossoming around the Tidal Basin (otherwise famous for Wilbur Mills driving into it with Fanne Foxe). The early morning light turns all the stones at Arlington Cemetery a pale coral.

On the upper portion, the road follows a bluff alongside the river, and the river changes.

Down my way, it's broad and sluggish, and deep enough for small ocean-going vessels to come up as far as the Orinoco Street Wharf. But north of the Memorial Bridge, the entrance to Arlington Cemetery, the river narrows, in a little gorge, with rocks causing rapids. The high school and college crews are often rowing in that portion of the river, going from the boathouse in Georgetown down to the boathouse in Alexandria, always going downstream for some reason. I never see them trying to row against the tide.

I leave the parkway at Spout Run, a rocky little tributary with a tiny waterfall that I can see as I take the turn west to go to Fairfax. When it is raining, the tiny waterfall turns into a small raging torrent, rather like a ferocious kitten.

This morning as I drove up, I noticed that the daffodils were beginning to bloom, the willows were soft spring green and the maples were budding red. All this in the week since my husband left. His flight was delayed a day because of a sleet storm last weekend.

He'll be pleased to return tonight.

Revolution, uh, Doctor Number 9

So, now I'm seeing nine doctors.

One endocrinologist, one primary care, one pulmonologist (or somebody in his office), two cardiologists, two rheumatologists, one retina-specialist opthalmologist, and now, one gastrointerologist.

I went to see the GI guy because one of the symptoms of the alleged connective tissue disorder that I may or may not have is "esophogeal dysmotility." Like indigestion.

I've been conquering it fairly well with OTC stuff, until recently. But I was thinking I needed his help recently, so I made an appointment.

I walked into his office, and he was friendly and what-can-I-do-fer-ya and I said "I'm going to give you the five minute version of the last three years," and proceded to do so. At the end of five minutes, he cocked his head and said "You've done this routine before, haven't you?" He then started pulling out samples and writing prescriptions for me to try short-term, to get an idea of what might work well for me by the trial-and-error method.

For, as he said, "Normally, I'd suggest we do an endoscopy and see what's going on in your esophagus, but if I walk up to an anesthesiologist and tell him, 'Oh, I have a patient I need your help with who has Pulmonary Hypertension and a Pericardial Effusion,' he'd just gimme one of these," holding up his crossed index fingers vampire-repelling-style.

Evidently, you see, all the stuff I'm taking daily is what the anesthesiologists give to people going the wrong way during surgery. Anesthesia is hard on the arteries, and when pressures start getting high, they administer nitric oxide (which is an outcome of every drug I'm taking for PH) by a number of routes, including a touch of Viagra. So if things started going badly for me, they'd have nothing left to try.

Something I had always suspected...

You Are a Drama Princess

You're not over the top dramatic, but you have your moments. You know how to steal the spotlight... And how to act out to get your way. People around you know that you're good for a laugh. But at times, your drama gets a bit too much for everyone. Tone it down a tad, and you'll still be the center of attention.

Are You a Drama Queen (or King)?

The PHA and PHriends

The Pulmonary Hypertension Association (PHA) is the major lobbying group and research support organization in the US. It's kind of an interesting organization, because they sponsor research symposia for clinicians and researchers, and invite the patients. I've attended three of their gatherings, and the amount of information to be gleaned (most of which just flies right over my head) is amazing.

The other thing they provide is a place for patients (and caregivers and occasionally clinical professionals) to gather and "meet" each other online. This group is terribly important to those newly diagnosed who are scared at the prognosis and the odd treatments (the chance of having a pump permanently affixed to you isn't an everyday occurrance).

In a chat room one night, we discussed how nice it would be to be able to see one another, instead of just typing at one another. I volunteered to build a portrait page for us, and there will be a link to it in the bottom of this post.

Look at these faces. We don't look sick. Yet in the two weeks since I built the page, one of us has already died.

In the slideshow mode on this page, the faces and names just keep coming.

Most of us have never met in real life, never pressed the flesh. And yet, we are community. We have dark humor, bitch and moan about our husbands, and reinforce our mutual denial that anything is wrong with us.

When one of us dies, it cracks that denial just a little bit.

PH Patients

Random and pointless thoughts...

A mailing list that I've been a part of for over ten years is currently discussing whether sex is better if you're religious.

One poster (the self appointed list curmudgeon) said that sex wouldn't be good if you were an athiest. How could it be good, when at orgasm you cry out "O Great Nonexistent Void!" It would spoil the moment. It just would.

Another suggested that depending upon the gender of those engaged, a pagan yelling "Oh, Goddess!" might or might not be a Good Thing.




I did our taxes today.

It isn't cheap having a dread disease.

Those $20 co-pays for the doctor's office visits? Do one every week and they add up to over a thousand dollars.

My oxygen alone costs $1800 a year over the insurance coverage.

I had nearly $1500 in pharmacy co-pays. And that doesn't even cover the $4,000 for the infusion treatment.

Oh, and because the prednisone is making me insulin-dependant, the glucose test strips were $1200.

I am very thankful that we have good insurance. Very good insurance.

And strangely enough, it's nearly as good if you have no insurance. A lot of the companies will give you the stuff if you meet their criteria for give aways. Doctors will see you with little or no charge.

It's the folks in the middle who get hit. Their insurers don't pay "out of network" treatments very well, and they make too much money to get a break from the pharmaceutical companies or distributors. I have heard some horror stories from this middle group.

New Doctors, Young Doctors. Old Doctors.

I went to Georgetown Hospital today to see the mighty specialist. And I liked her a lot.

Georgetown U is (oddly enough) in the middle of Georgetown, which to those of you who do not frequent this realm, is a kind of cozy upscale Greenwich Village comme Rodeo Drive area. Which also means that the streets are narrow and there's constant renovation going on, gentrifying the gentrified and (like every college campus I've ever been on) they're building new and renovating old on campus. So, navigating toward the hospital entailed a number of detours through Very Nice Neighborhoods With Very Narrow Streets. I passed the Very Exclusive Schools of Georgetown Visitation and the Washington International School.

They sent me a notice last week of the time and place of my Appointment with Her Majesty. They got my name wrong (wrong first name, hyphenated maiden and last name) and when I arrived this morning, they informed me that I was an hour early. I whipped out the offending letter, and the woman cried out, "Oh Lawdy, Lawdy! Who do they have working downstairs??"

The parking lot is in the midst of renovation, so they had valet parking, which was rather nice, so I didn't have to traipse all over creation dragging my oxygen with me. And it was COLD. It was 60 degrees last night at midnight, and it was 40 when I walked out the door today.

And I am a bit spoiled, because Georgetown is not new. My PH clinic is in a very new, very architectural building, with curved walls and generous open spaces everywhere. Georgetown does have a magnificent reputation, but the doctor's building looks like a mid-60's government building with many tiny offices strewn warren-like across a floor like empty shoe boxes at a PayLess store.

Anyway, so I spent the first hour (which was evidently not my hour to spend, but I took it) talking at length with a resident in rheumatology, describing my symptoms (and non-symptoms) and the course of the last year (yes, today is the actual first anniversary of my Big Diagnosis). She was very sweet and very thorough.

Then she left, and I pulled my phone out of my bag and began to listen to Nathaniel Philbrick's "Mayflower," which I have as an Audible book on my phone. I wrapped myself up in my paisley wrap and promptly fell asleep. About ten minutes into my nap, they came bursting through the door, young doctor (not) Malone and Dr All That And A Bag Of Chips Her Own Self.

We chatted about my symptoms, my tests, her experience with PH patients. She was at one point the consulting rheumatologist for the lung transplant program at the University of Pittsburgh, and had some interesting observations.

Until recently, PH was classified as Primary Pulmonary Hypertension, which meant that it had no other condition associated with it as a cause, and Secondary Pulmonary Hypertension, which has some underlying disease process (including autoimmune and connective tissue diseases) contributing to the PH. More recently, however, this was changed, because there's basically very little difference in the way that PH is treated, no matter what the cause. Dr All That says that when she was at Pittsburgh, she saw many, many transplant patients who were diagnosed with Primary PH, but had several of the indicative symptoms of Limited Scleroderma (Reynaud's, Esophageal reflux, calcinosis and ulcers on fingers, etc).

She tends to think that my PH is probably caused by Limited Scleroderma, but she can't be sure of it because I have some very general symptoms that could or could not be indicative of it. She wants to see some other test results before she pronounces firmly, and she also wants me to get completely off the prednisone to see if the pericardial effusion returns. This would indicate whether the improved pulmonary artery pressure is causing the effusion to wane, or if it is indeed the prednisone.

She did like my pink saddle oxfords. Too cold for boat shoes.

From the Sublime to the Ridiculous

I now own three pairs of pink shoes.

West Marine had a pair of pink Sperry TopSiders on their clearance table in my size, so now I have Official Boat Shoes in my color of choice.

This is getting silly.

On Tuesday morning I go visit a new rheumatologist and she's supposed to be all that and a bag of chips. We shall see. I actually met her recently at the National Institutes of Health at a symposium, and she said "Oh yes, I just received your records. You look to be doing very well to have such a fat pile of paper." I agreed.

She specializes in PH related to connective tissue and autoimmune disorders. I hope she'll feel confident to give me an actual diagnosis, rather than this sort of vague "something" that's going on... The cardiologist who did my right heart cath was pleased to hear that I was going to see her. He said that he had known her when he was in training at the University of Pittsburgh Med Center (and he's about my age, so that would have been better than 25 years ago) when UPMC was THE place for research and treatment of lupus and scleroderma and such.

My current rheumatologist likes my pink saddle oxfords. Perhaps the new one will like pink boat shoes.

More organ recital

I had my one-year right heart catheterization last Wednesday. I don't have all the results, but the doc told me while still in the lab that my systolic pressure was down from 120 last year to 70 this year, which puts me from the "severe" category into the "moderate" category, which is certainly good to hear. I wonder what it takes to be in the "zero" category?

The cath lab, for those of you who have never had the privilege, is kept very cold so they don't have to worry so much about infections. An acquaintance who is a cardiac nurse said at her hospital they call the cath lab "Antarctica," because it is freezing and it is "somewhere down there." The one at my hospital has giant botanical slides on the ceiling for you to look at while they drill you up. This week's was pink, cherry or peach blossoms. Last year's was yellow, I think tababuia trees.

For a left heart catheterization, like the ones you get for a balloon angioplasty or a stent, they open an artery in your groin and snake the probe up to the portion of your heart that needs treating. This constitutes about 95% of the caths done. They make you lie flat for several hours afterward to make sure that the artery in your groin doesn't suddenly start spurting when you stand up, sit up or sneeze. This is probably a good thing, says Martha S.

For a right heart cath, they open a vein either in the groin or in the neck. They use something called a Swan-Ganz catheter, which works like a spinnaker on a sailboat (which makes me love it even more). It has several tiny ports in it, with pressure-sensing transducers. What that means is that it has a small balloon at the end that acts like a sail and lets the bloodflow pull it through where it should go, which is all the way through the heart and into the pulmonary artery. The little transducers are measuring the pressures all the way across, but only a few of the pressure readings are important. One of those is wedge pressure, which is kind of interesting. It basically measures how your heart valves are working. They put the catheter into a fork of the pulmonary artery and block off one branch for about ten seconds and measure the pressure in the other fork. This pressure tells them what your aortic valves, your mitral valves and tricuspid valves are doing (I think... I am not a cardiologist. Yet.).

Another thing it measures is the pulmonary artery pressure itself, which is Very Important To Me. If mine is down nearly 60 percent in a year, that is Very Good. If I can keep bringing it down, that would be Very Very Good.

They don't do very many right heart caths, as I mentioned before. I had one little nursey (they look so young.... or do I look so old...) who kept insisting that I not move because they opened my artery. I told her if they did they'd made a mistake. She looked very confused and called her supervisor/colleague/older looking nurse and she verified that, yes, I had had a vein opened so that while I did have to lie flat, I could wiggle if I liked. She also wanted to know if I was having a biopsy on my heart transplant. I told her no. I certainly hoped not.