Saturday, January 27, 2007

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.

Tuesday, January 16, 2007

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.

Saturday, January 13, 2007

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.

Monday, January 08, 2007

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.