About that previous entry … well, cancel that.
My surgery was cancelled by the anesthesiologist, who is concerned that my high blood pressue could cause me to stroke out or have a heart attack on the table. He cancelled the surgery a mere 12 hours before it was supposed to start.
Chalk up yet another reason to hate California (I know, I know!).
Anyway. I added two more hypertension meds (I’m now on five) and went to the hospital where someone massaged my chest for 45 minutes. Unfortunately, it wasn’t the good kind of massage; it was done by a very nice lady in order to get an echocardiogram of my heart to find out if there has been any damage from four years of this mess. The next day, I saw the surgeon again and rescheduled the surgery. I’m now on for Friday, 7-Dec, at 13:00 at John Muir/Mount Diablo-Concord. So the countdown starts again.
Speaking of four years, I’m not sure I’ve ever committed to the ether the long saga of what’s happened to me medically. Prepare to be bored out of your mind. It is, however, a typical illustration of how the (dysfuncitonal) American medical system works (or doesn’t).
Fall 2003 — After moving to Ann Arbor, I notice I’m gaining weight and my blood pressure is going up. I attribute it to turning 40.
April 2004 — Forced by the evil No Child Left Untested law, I have to take four undergrad social studies courses to qualify for my master’s degree program at UMich, courses which have been added to social studies minor requirements since I was in college. I take the easy way on advice of my UMich professor and sign up for three months of online study through Brigham Young University. While taking notes and tests for these, I notice that my hands and other joints are very painful. I attribute it to being 40 and in a cold northern climate.
June 2004 — While taking a grad-level math content course which requires three straight hours of note-taking and writing, the hand/wrist pain gets worse. While driving home after class one day on I-94, the pain is so bad, I almost pass out behind the wheel. I start the endless succession of testing and doctor visits at this point.
July 2004 — Before my master’s program is due to start, I see my regular doc, who refers me to an occupational therapist, who suspects carpal tunnel syndrome and makes plaster casts for my hands. Looking back from three-and-a-half years later, this is akin to the officer of the deck directing a cabin boy to repair fabric on deck chairs on the Titanic as she hits the iceberg. The therapist ends up referring me to a hand surgeon. I make the regretful decision to postpone my master’s program a year so I can figure out what’s wrong, since the pain is getting worse.
October 2004 — After three months of electro-nerve conduction tests, an MRI of my wrists, numerous painful injections of pain killer and steroids directly into the nerves of my wrist, the hand surgeon refers me to a rheumatologist with a verdict of no carpal tunnel/must be arthritis. The cabin boy on the Titanic has now been replaced by an electrician, who begins to rewire the ship as she starts to settle at the bow, then decides to summon a welder.
November 2004 — The rheumatologist diagnoses my situation as reactive arthritis; my immune system was knocked out of whack by a particularly nasty round of bronchitis I had the previous January and said immune system is now attacking my joints. He prescribes a strong dose of sulfa drugs and steroids to suppress said immune system. The Titanic musicians begin to play on a tilting deck while a plumber sends a bottle of drano into the ship’s septic system, hoping to stop the sinking.
Thanksgiving weekend 2004 — Running a high fever and delirious, I spend eight hours in the University of Michigan Hospital emergency room, muttering incomprehensibly and occasionally insulting passers-by. Eventually, a verdict of sorts is reached: I am allergic to sulfa drugs. The plumber on the Titanic is hit in the face with water and drano and the ship’s lights begin to go out.
June 2005 — While on pain medications, I start my master’s program and bust through the year, whining all the way. The rheumatologist is mystified, my regular doctor says, and I quote, “Medical science doesn’t have all the answers. Or even most of them.” Did I mention my regular doctor is a med school professor and the director of internal medicine for University Hospital and UM’s medical school? Back on the Titanic, the plumber wanders off to find a wrench and never returns. The officer of the deck disappears as well.
April-July 2006 — I get pneumonia and spend two days in Saline’s hospital, but I graduate with a 4.0 average and Frank gets a job offer back in the Bay Area. We pack up and leave Ann Arbor. Hey, let’s wander over to the other side of the Titanic, shall we? There are other, better crewmembers over there …
August 2006 — In a humiliating repeat of my postponement of grad school, I am forced to resign my first teaching job after only four weeks due to the increasing pain in my joints and increasing hypertension. By now, I’ve gained 30 pounds and have zero energy. Getting out of bed and downstairs is a struggle. Keeping up with 180 seventh- and eighth-graders is a nightmare. I resign the position and my new regular doctor refers me to a new rheumatologist, who plies me with the blessed Vicodin. I start substitute teaching in Brentwood. The Titanic‘s deck angle grows sharper, the orchestra strikes up Nearer My God to Thee and the officer of the deck on the other side assigns another plumber to try to right the ship. The plumber dumps drano overboard and gets everyone nearby riotously drunk.
January 2007 — One night as they go to bed, my rheumatologist mentions my case to her husband, a nephrologist. He suggests a referral and kidney workup. I can have an appointment in two months. The Titanic‘s plumber tosses me some more vodka, introduces me to one of the ship’s engineers and prepares to abandon ship.
March 2007 — A complete kidney workup which mainly features collecting all of my pee for 48 hours in two jugs shows nothing abnormal, but there is a high concentration of a hormone called Aldosterone in my blood. Aldosterone is produced by the adrenal glands and regulates potassium and sodium levels (and therefore blood pressure, energy, stamina, etc.) in the body. The nephrologist refers me to an endocrinologist, since my grandmother lost a kidney to cancer and then died of renal failure and my father has a nonfunctioning adenoma on one of his adrenal glands. Pain is still high and Vicodin is still flowing; there’s now a handicapped placard hanging from the Jeep’s rearview mirror. As the Titanic‘s bow begins to rise from the water, the ship’s engineer introduces me to one of the ship’s officers, then heads overboard after the plumber. The engineer, educated at the finest schools in the world, suspects that there is a hole in the ship. The orchestra is finding it more difficult to play Nearer My God to Thee.
April 2007 — After more extensive testing, including several more 48-hour pee collections, volumes of blood, x-rays, an ultrasound and two anti-hypertensive medications, the endocrinologist brings in a verdict: Primary hyperaldosteronism and a microadenoma mass on the left adrenal gland. The prescription: I must undergo three more tests to find out if the mass is producing all the aldosterone or if it’s both adrenal glands together doing it. If it’s the mass, we do an adrenalectomy. If it’s the glands (bilateral hyperplasia), then we treat it with drugs. A CT scan and two saline load tests ensue, in which my body is flooded with high concentrations of sodium and then my aldosterone levels are measured. If the aldosterone stays high, then the diagnosis is confirmed. If it drops, then something else is wrong. The test is first tried with me eating all the salt and sodium foods I can find. It doesn’t increase the sodium level enough, even after I feel like a walking Great Salt Lake. The test is repeated intravenously at the hospital over four hours. There is a risk of heart attack or stroke. That which does not kill us makes us stronger is mentioned. The intravenous saline load test confirms the hyperaldosteronism diagnosis. The CT scan confirms the left adrenal microadenoma, which is less than five millimeters. The endocrinologist promises one last test and then surgery and relief. A month, tops. Much Vicodin is being consumed, as well as occasional vodka martinis. Meanwhile, on the Titanic, the ship’s officer leans over, spots the gash in the side and yells, “Eureka! I think that’s our problem!” But he orders his crew to conduct five different tests in order to confirm the hole in the side. The deck tilts higher up, the orchestra begins to slide down the deck. The officer shrugs and says, “Oh, we’ll know something in a month and then be able to procede with repairs.”
July 2007 — Two months passes before all tests and insurance approvals and scheduling can be completed for the final hurdle before surgery and relief: a diabolical procedure called an Adrenal Vein Sampling (AVS) test, performed in an operating room under local anesthetic. A radiologist shaves and numbs your crotch, then passes a long thin catheter up your femoral vein into the left adrenal gland. The procedure is long and difficult since it is akin to attempting to obtain a drop of water from a specific spot in a sewer system while working from a manhole cover 10 miles away. The procedure is ostensibly successful; it takes three hours, but the radiologist has samples and it looks like we’re on our way. Then the lab informs the endocrinologist that not enough blood was drawn in order to measure what must be measured. AVS#1 is a failure. Back on the Titanic, the ship’s officer reports the failure of his crew to snake a line down the side of the ship to measure the hole. “Without knowing how big the hole is and whether the water is really coming in the hole, we can’t repair it, now can we?” The orchestra is no longer playing, and is, in fact, no longer on deck; they’ve hit the water and are drowning. There’s no vodka on board and the only relief is to beat my head against the wall. The ship’s officer remains upbeat.
Two weeks later, a second AVS is attempted. This time, it too is successful. A week later, the lab reports the numbers to the endocrinologist. ‘What does “greater than 50’ mean when it comes to the right aldosterone level?’ How much greater than 50?’ The lab doesn’t know and has discarded the sample. AVS#2 is deemed a failure. My crotch, bearing two deep puncture marks, and I pass out. More of the VV, Vicodin and Vodka. AVS#3 is scheduled for the end of August at UCSF Medical Center, a teaching hospital with radiologists and a lab more familiar with the procedure’s requirements. Back on the Titanic, two crew members die trying to measure the hole. The ship’s officer is hanging on to the railing with his feet dangling. ‘It would be malpractice to repair that hole without knowing for sure,’ he cries. I am knocked out temporarily by a falling railing, but manage to barely hang on.
August 2007 — Things get seriously higgledy-piggledy. I accept a job offer to teach sixth grade math/science at a tough junior high in Pittsburg, a 15-mile, 45-minute commute. AVS#3 can be done on a day the week before school starts and shouldn’t be a problem. I am very, very wrong about this. AVS#3 at UCSF is performed by a resident with an experienced attending nearby. He successfully samples the left adrenal, then starts the hunt for the right. He punctures my inferior vena cavae. The attending knocks me out, ends the procedure, whisks me away for a CT scan, which shows internal bleeding, an inflamed pancreas and an inflamed right adrenal gland. I am admitted to the hospital overnight and given the mother of all painkillers, Dilaudid, which I discover later is a derivative of morphine eight times more powerful than morphine. Nurses pump it into me overnight every four hours and it is bliss. As it enters the IV, it spreads warmth, happiness, goodwill, charm, and love for mankind all over the flippin’ place. It is damn good stuff. I am instantly hooked. I am sent home the next morning and the day after that I get my classroom ready for school. By the end of the afternoon, I’m a mess, doubled over in pain, feverish, shaking, irritable, paranoid, panicky.
At home that evening, the freak-out is turned up as the Dilaudid cravings get worse. The pain also gets worse in my abdomen. I decide a trip to the Walnut Creek ER is in order. Frank sighs in an apparently inappropriate manner. It provokes an astonishingly vicious tirade — hulk gets mad. I leave the house by myself and drive to Walnut Creek on the back winding mountain road. Frank is calling me to come back home so he can drive, and he gets earfuls of venom. This is perhaps one my ugliest moments as a human, certainly the ugliest on my part in our marriage.
Miraculously, I reach John Muir Medical Center in Walnut Creek without wrecking the Jeep. I am taken back to the ER where I listen to an 18-year-old on the other side of the curtain describe in glorious detail how she completely O.D.‘ed on Ecstasy at a rock concert at Concord Pavilion and how she ‘squirts’ when she’s poked with a needle (don’t ask). My own drama continues as a CT scan shows pancreatitis, internal bleeding, the inflamed right adrenal gland, and, a new wrinkle, a new adenoma on the right gland. I’m admitted to the sixth floor of the hospital, plied with more Dilaudid in higher dosages, and spend three days getting the pancreatitis under control. It does subside with massive antibiotics, but now my gall bladder is screwed up and needs removal.
Meanwhile, the Dilaudid is pumping … at least until Saturday night, when a new shift change nurse ignores me for six hours. I begin to come off the Dilaudid. The result is not pretty. Hulk mad. Hulk take vengeance on world. I confront the nursing staff for their inattention and then demand to be released on my own power. I speak with the oncall physician who reluctantly agrees. I sit in the ER waiting room while Frank drives over to pick me up. The hospital’s supervisor apologizes. Hulk still angry, but able to be civil. I go home.
I start school on Monday and Tuesday, but by Tuesday night, I’m seriously crashing due to low potassium and no Dilaudid. David and I set out for the ER again, but there is a huge wait in Walnut Creek. I get the screaming mimi’s on the way home. Frank takes me to the Concord ER, where for six hours I lie twitching and gibbering and getting pumped full of potassium and other drugs to counteract the Dilaudid reaction. I will miss the rest of the first week of school. The Titanic slips beneath the waves and heads for the bottom. The ship’s officer and I are clinging to debris. “I know we can fix her if we can just find out how big the hole is!” he says.
September 2007 — I now need a gall bladder surgery and AVS#4. A referral to a surgeon results in stalemate; she’s unwilling to operate until my blood pressure is down; endocrinologist can’t get my blood pressue down until an AVS is successful. We take a breather. Gallbladder surgery is put off ‘til November and AVS#4 is scheduled for late October, at Walnut Creek, the third facility/radiologist to attempt it. The ship’s officer gathers a crew to attempt a dive down to the Titanic to measure the hole. “Then we’ll bring her right up again, you’ll see!”
October 2007 — AVS#4 isn’t a disaster, but the radiologist is unable to snake the catheter into the right adrenal gland. AVS#4 is a failure. My only options: The Mayo Clinic in Minnesota or Stanford Medical Center, an unknown quantity. I schedule the gallbladder for 20-Nov, throwing up my arms. The Titanic‘s officer is consulting with the ship’s designer, who clings to debris nearby. The designer is certain the ship’s plumbing can be fixed before the hole is repaired and the ship raised. Listening to them, I begin to go insane.
November 2007 — Blue Shield denies my request that AVS#5 be performed by the Mayo Clinic. That leaves Stanford. Each AVS has cost the insurance over $30,000. If they want to refuse to allow the best to get it done, then we’ll just keep repeating it here in the Bay Area at $30,000 a pop out of their pocket. Idiots. Meanwhile, the 20-Nov surgery date is cancelled by the anesthesiologist, who senses some major lawsuit action if I croak on the table due to my high blood pressure. He insists on more meds and a detailed echocardiogram. The five antihypertensives I subsequently take turn me into a drugged, whacked-out zombie, barely able to move. They dehydrate me and rob me of the little potassium I have left. But the anesthesiologist is satisfied because my systolic has dropped 10 points and he no longer is panicked about a lawsuit. The gallbladder surgery is rescheduled for the 66th anniversary of Pearl Harbor.
And that’s where we stand. Crews are working on the Titanic‘s plumbing and the Arizona is about to blow up. It’s gonna be a hell of a weekend.