The Mayo Diary Part 1

The following is an account of my weeklong visit to the Mayo Clinic in Rochester, Minnesota in March of 2009 for testing and consultation for an autonomic nervous system disorder which I’ve been living with since 1989.  The disorder is called Postural Orthostatic Tachycardia Syndrome, or POTS for short.  This ‘diary’ was actually begun during my stay at Mayo but took 18 months to complete, setting a personal record for procrastination.  

Sunday – Travel from Denver to Rochester

I’m walking to my gate at DIA, impatient to get on an airplane that will take me to Minneapolis, where I’ll get in my rental car and drive eighty miles in unsettled spring weather to Rochester, home of the renowned Mayo Clinic.  I find a spot to settle down near my gate with a comfortable one-seat gap between two normal looking people.  Once I’m seated I immediately sense that the fellow to my right is peeking in my direction.  He was probably in his sixties, with close cropped hair and gold rimmed glasses. He struck me as someone who took life pretty seriously.

After a couple of glances in my direction he addresses me directly.  “Excuse me, but I couldn’t help noticing your head covering and I was wondering if I could ask you a question.  I’ve been doing some reading.”

Uh, oh.  I know where this is headed.  I'm Jewish, my head covering is a yarmulke, and the question will be religious.   I do a quick rundown of the pros and cons of engaging him – one of the pros is “this will give me something to do for the next 20 minutes until it’s time to board” - and decide that I’ll take the bait.  I respond, “Sure, go ahead.”

“Why were Abraham and his descendants chosen by God?” 

I pause for a moment to ponder the rather startling shift in personal responsibility that I’ve just experienced.   When I had taken a seat less than a minute earlier, I was debating whether I should take out my iPod or eat an orange-chocolate energy bar, or perhaps do both.   Now I’ve been engaged in a discussion about the purpose of the universe.  I consider whether it might be OK to go ahead and eat the energy bar while we’re discussing the universe, but in the end I decide it can wait.     

He seemed genuinely curious, so I gathered my thoughts and answered as directly as I could.  He considered and digested my response, and followed it with other questions; he wasn’t there to argue, which I greatly appreciated, but I could sense that he was holding something back.  There was one question I knew he must have that I sensed was simmering inside him.  Finally he let it out:  “Why haven’t the Jews accepted Jesus as their savior and messiah?”  I had a pretty direct answer for him, but I wanted to deliver it in a sensitive, thoughtful manner.  So I asked myself: WWJD?

We ended up talking about concepts of heaven and hell (“Do you believe that Satan was kicked out of heaven?”), and in the end he seemed satisfied and we wished each other a safe flight.  An interesting way to start off a trip.

After landing in Minneapolis I took an airport tram to Enterprise Car Rental to pick up the midsize that I’d reserved online for a very reasonable rate. At the counter I was greeted by a charming, beautiful rental agent.  She left the counter to personally escort me to my car, peppering her conversation with personal questions. She had bright eyes and a brilliant smile, which she flashed whenever she spoke. I admittedly enjoyed the attention, but a thought stirred in the back of my mind that this behavior was slightly odd, and I was wary that a sales pitch of some sort was brewing. Once in the lot, she told me that business was slow and I could pretty much choose any car that I desired.  She said nothing about the potential upgrade being free.  So that’s her game, I thought. 

Of course, a woman flirting with a man to make a sale is nothing new. In a trendy men’s store at a mall, for instance, a pretty sales agent might flirt with an unsuspecting guy who’s really just there to look around.  She gives him a random compliment and might add a mischievous glance or two, and suddenly he’s in the mood for shopping. An hour later he’s sitting at home when his brain clears, and he finds himself staring blankly at a hideous, purple silk shirt that, according to the receipt (he doesn’t really remember the actual transaction), he purchased for a cool $95.  The guy knows the shirt will never leave his closet but he’s too embarrassed to return it, and he vows he’ll never fall for that trick again.   This happened to a friend of mine. 

Anyways, I knew that an unlimited free upgrade sounded too good to be true and I was on to her, so I said, “Sure, what do you have?”    I made a mental note that this sales technique is quite effective.  She cheerily offered a Lincoln “for only $20 more per day!!”  Twenty bucks extra per day for a Lincoln?  I was a little taken aback by this, as I was under the impression that ‘upgrade’ meant, well, an upgrade.  I asked if she could please just show me the midsize that I’d reserved, but she wasn’t ready to give up.   She asked about renting an SUV or a crossover vehicle. No and no.  “How about a PT Cruiser?”  Sigh.  I think she read the impatient look on my face, because at that point she decided to play her ace in the hole:  they had an Infiniti M35 available for an extra $10 a day, and my face lit up - she’d won. 

It took me 5 minutes to figure out how to start the M35 (you press the ignition button while your foot’s on the brake), but once that little obstacle was out of the way it was a kick to drive.  Or could have been a kick to drive, I should say - the road from Minneapolis to Rochester was mind-numbingly dreary.  In mid March the view was nothing but barren topsoil dotted with the occasional tree.  Plus, by that time it was early evening and after a half day of travel I was pretty well exhausted.  In retrospect, the M35 was wasted on me - I should have stuck with the boring midsize that I’d reserved (assuming that it actually existed).  At least I had heated leather seats. 

I checked in at my hotel in Rochester in the early evening and asked for the package of food which I had shipped to the hotel ahead of my arrival to accommodate my diet (I keep kosher).   A few days prior I had tracked the package and seen a confirmed delivery, so I wasn’t overly concerned when I was told that they couldn’t find it.  I couldn’t eat anyways at that hour because of the upcoming blood tests I had scheduled the following morning, so I told them what the package looked like and figured I’d pick it up when I came back from the clinic the following afternoon. 

Monday – Test Boot Camp

After an OK night’s sleep with a little help from some Ambien, I arose early and drove the 1 mile or so from my hotel to the central hub of the Mayo Clinic.  I parked at the Damon Ramp, a well-designed 11 story parking garage, took  the elevator down to the “Subway Level”, and stepped into a spacious, well appointed, subterranean pedestrian tunnel, one of a network of tunnels which together connects nearly every building in the facility.  I’m here.

The Mayo Clinic in Rochester is the largest medical facility of its kind in the world.  There are several outpatient buildings ranging in size from large to enormous (two of the buildings are 20 stories high), and two big hospitals.  I didn’t spend any time sightseeing (can you use that word in Rochester?), but I got the impression that the city and its inhabitants were all, to varying degrees, affected by the presence of this enormous hub of medical activity.  Many hotels have free shuttles to Mayo.  Exit signs and street signs direct drivers to Mayo.  The Mayo buildings aren’t in downtown, they are downtown. 

I was told by one of the nurses that Mayo employs 35,000 people. That’s about one out of every three residents in a moderately large city working for one employer. The Mayo’s size and reputation were so impressive that I was every bit as curious to see the facility as I was eager to hopefully begin unraveling the symptoms that had brought me here for my week long clinical study.

View of the Mayo and Gonda buildings, where most of my tests took place.

One of the many underground tunnels in the Mayo system.

Prior to my visit I had been mailed a detailed, easy to follow schedule with a list of my appointments and their respective locations.  The schedule ran several pages and included an appendix at the back with additional information on what to expect during the various tests that I would be undergoing.  I noticed with some trepidation that a ‘Sweat Test’ was scheduled for Tuesday morning, which I gathered from the appendix to be an extended stay in a small, windowed heat chamber, covered with sweat-sensitive powder (and not much else), while lying completely stationary for up to an hour.  This didn’t sound like much fun, but the appendix also mentioned that music CD’s could be brought in to pass the time (or an iPod, I assumed), and they also had music that could be piped through the chamber speakers.  How bad could it be?  For now, I turned my attention to today’s schedule.

My first appointment was a blood draw at the Hilton Building at 7 a.m. This was technically on the other side of a busy street from my arrival point, but as I soon discovered, outdoor logistics (and weather, thankfully) were rendered meaningless once comfortably ensconced in the underground tunnels.  I followed one of these tunnels now to the check in at Hilton and was given my first taste of Mayo, as it were. 

Despite the early time (I arrived around 6:45 a.m.), a moderately long line had already formed in front of the check-in desk.  I was concerned momentarily, but quickly realized that the line was moving briskly.   When I reached the front of the line less than two minutes later I discovered how this was so.  There were perhaps seven or eight check-in agents, and when called forward I was asked for my schedule.  I handed it to the agent, who then scanned a barcode which I noticed was printed at the bottom of each page, and told me that I should proceed to a nurse’s desk on the other side of the room.   That was it.  The entire process took maybe ten seconds.  I would have to check in about 15 times in the coming week, and I never failed to appreciate this model of efficiency.

At the nurse’s desk I was presented with a clear, plastic 3-liter jug for a 24-hour urine test.  I was instructed to keep the jug with me until the following morning, when I would return the jug (with its contents, of course) to the same desk.  I didn’t take the jug - at least not right away.   I had a very public day awaiting me, and I pictured myself walking through busy corridors, sitting in busy waiting rooms, riding in busy elevators, and passing the hotel check-in staff at the end of the day, all while toting a large, clear jug containing steadily increasing quantities of pee.  I was a little intrigued by the idea of carrying it through the hotel, as it would make a good test of customer relations:  “Would you mind storing this jug in a fridge?  I’ll just pick it up in the morning.” But even in a medical facility I imagined that the stares would be frequent, and I’d be given a wide berth on an elevator, or told “that’s OK, I’ll just wait for the next one.”  I asked the nurse if she perhaps had something that I could carry the jug in, and thankfully she had a brown plastic bag that did the trick.  I thanked her, and she pointed me to a set of purple doors across the room where I was to go and get my blood drawn.

I pushed through the purple doors and found myself in a large waiting area, with five or six long rows of comfortably padded chairs all facing expectantly in the same direction, towards a pair of hallways which were curtained on either side by a series of blood draw rooms.   With no further instructions at hand, I found a seat and for the first time took in my surroundings a bit more carefully.  

The seats and carpeting were patterned in soft blues and purples.  Scandinavian wood panels with deep colors covered much of the wall space.  And the air was textured with the sound of classical music.  I recognized the pieces, but unfortunately they had been given the musical equivalent of a lobotomy – it was, of course, elevator music.   The overall effect of the room was soothing and pleasant, but I attributed this more to the décor than the music. I couldn’t help wondering how one is trained to create elevator music. Are there courses in this field?  If so, do you ace the final exam by putting the professor to sleep with your arrangement?  “Terrific work, I was out cold after the first few bars. You’ve got the makings of something special.  I’ve already set up interviews with a dental group and a couple of shopping malls.”  I yawned and made a mental note to never think about the subject again. 

Within about 5 minutes my name was called, and as we walked into one of the blood draw rooms the nurse asked me to state my name and date of birth.  This would be repeated at every appointment in every department, clearly as a safeguard that the right person has been checked in.   After filling a dozen or so vials of blood (I inquired whether they might also like a non-vital organ, but they declined), I was sent on my way.  I checked the schedule and saw that an ECG was up next, so I made my way back through the tunnel to the Mayo building and took an elevator to the 5^th floor, home of the Cardiovascular Clinic.

After checking in and having a seat in the waiting room (where I was greeted with more elevator music), I watched with some interest as people were called for their ECG.  The Cardio floor actually has several waiting rooms, and this one was apparently reserved for this common procedure.  When a nurse appeared at the entrance, rather than call one name at a time, she instead called a group of three or four, either all men or all women.   After a couple of minutes I was taken with 3 other men, and we were led through the left most of two doorways (the other door obviously led into the women’s side) and into a very narrow hallway, about four feet wide.  On one side was a series of small changing rooms; directly opposite each changing room was a door leading to a small room in which the electrocardiogram was performed.  The nurse directed each of us into our own stall and instructed us to remove our shirts and replace them with a gown, and to push the door ajar when we were ready. 

I changed into the gown, opened the door, and waited.  By now I knew that the wait would be short, and within a minute or so the nurse led me across the hallway – a distance I covered in two steps – and into the ECG room.  The room had a bed, which I was told to lie down on, and an arm extending from the wall which contained the necessary electric leads and wiring.  There was nothing else in the room.  The nurse attached the electrodes to my chest and stepped outside.  In about 30 seconds she walked back in, unhooked the wires, and told me I was done.  I took the two steps back into the changing room, dressed, and walked out.  The whole process couldn’t have taken more than 3 minutes.

By now I was beginning to form a general impression of the clinic, which I would describe as ‘eerily pleasant’.  For some reason, the combination of the soothing decor, the factory-like size and efficiency of the place, the unusually friendly staff and my active imagination brought to mind a large clinic in some sort of futuristic society like in Logan’s Run or Gattaca, except with more elevator music.  I imagined ‘failing’ one of my tests and being told by a smiling nurse that I would need to come with her for ‘processing’.  I’d catch the evil glint in her eye, say “of course,” then turn and make a mad dash for freedom.  The elevator music would suddenly cease and the wall speakers would become a PA system, announcing an All Points Bulletin for my capture. I’d go careening through corridors and tunnels and sprint up and down stairways while being chased by all 35,000 Mayo employees until, by sheer luck, I would run into fellow escapee Jason Bourne (played by Matt Damon, of course). While guiding me to the rooftop of the 20-story Mayo Tower, he would explain that he was running because he had failed a psychological exam and that we were headed for the roof because he was getting too old to kill 35,000 people with his bare hands.  Once on the roof, we would jump into the conveniently available emergency helicopter and fly to safety. 

Of course, if this imaginary scenario became a Clint Eastwood screenplay the ending would need some rewriting. Most notably, after our triumphant getaway the copter would develop a critical fuel leak and we’d crash in a field just outside of Rochester. The film would end with Jason and I critically injured, being transported in an ambulance by a reassuring paramedic to… the Mayo Clinic, where we would meet our doom.  For the movie-goer, the ‘take-home’ message that life can be randomly cruel and unfair would be driven home by the $10 spent on a movie that gradually filled you with hope and anticipation, then popped those warm emotions into your face and your popcorn when the protagonist suffered a gruesome, out-of-left-field, wildly random accident.  On an unrelated note, I’m still bitter that I actually paid $10 to experience “Million Dollar Baby.”  

Wow, what a digression!  On second thought, maybe Mayo is just a big, well-run medical facility.  In any case, more tests awaited.  Next up was a tilt table test, in which the patient is strapped to a table while lying down, then tilted to near vertical and held in place until about 30 minutes have passed or the patient faints.  This test is the primary tool for the diagnosis of POTS.  For people like me who have this condition, blood flow is not regulated properly by the autonomic nervous system. While being held upright without the ability to shift positions, the blood volume returned to the heart begins dropping, and the heart responds by beating furiously to compensate.  The dramatic increase in heart rate is the giveaway that the patient likely has POTS.

I had been put through a tilt table test several years earlier when I was originally diagnosed with POTS, so I wasn’t surprised when my heartbeat began ramping up after being tilted upright.  Although the test should be outrageously boring (the nurses don’t talk to you or each other so as not to influence the results), the discomfort makes it an exercise in forbearance of suffering.  I must have checked the clock about 300 times during the half hour that I was upright.  Finally I was lowered and unstrapped, and I made my way to my next appointment.

After the usual orderly check-in, this time in the 19^th floor of the Gonda building (Electrophysiology Dept.),  I was led down a corridor to a lab walled on one side with windows, providing a breathtaking view of  some other Mayo buildings and a looming pile of grey rain clouds.   Maybe ‘breathtaking’ is a little strong.   A large pedestrian courtyard and walkway flanked the base of the surrounding buildings.  It was clearly designed to be used as a small urban park; there were trees, a small garden, and several attractive rod-iron benches.  Although it was near midday, the only sign of life in the courtyard was a solitary figure walking briskly with her jacket hunched over her head.  Turning my attention back inside the room, I noticed three computer monitors, all displaying scenes of swaying palm trees and white-sand beaches.   I asked one of the nurses if there was a connection between the tropical fantasy within the room and the decidedly non-tropical scenery on the other side of the glass.  She sighed, looked at the floor, and admitted that the weather in Rochester tended to be a little gloomy.   

The test itself was forgettable.  It was related to the endocrine system and involved an IV and lying on a bed for a half hour, which I passed by staring at the ceiling tiles and attempting unsuccessfully to take a nap.   I know that the test revealed nothing unusual, but have no recollection what specifically was being tested.   Maybe it was a memory test?  In any case, when it was over I was given my first food of the day, a cup of orange juice and a couple of saltines.   My day was nearly over.   The last appointment was back in Cardiology, where I was connected to a Holter Monitor, a small portable device which records the patient’s heart rhythms over a 24-hour period.    At about 1:30 p.m. the monitor was wired in place, and I was free to go.   I was exhausted, and the added encumbrance of the monitor and my special 3-liter companion didn’t help my mood. 

When I returned to the hotel I was more than a little hungry, evidenced by my eagerness to dive into my package of self-heating meals that by now the staff would surely have located.  You know you’re hungry if you have a craving for a self-heating meal or airline food.   I asked for my food package, which the hotel clerk had been unable to locate the night before but was confident would be found. 

Now, before mentioning what happened next, I should point out that: 1) I had sent the package via FedEx, a very reliable company; 2) I had spoken to the manager of the hotel before sending the package, and they had assured me that they would be expecting its delivery and would hold it for me until my arrival date;  3) a couple of days before departing on my trip, I had received confirmation of delivery to the correct hotel at the correct address, as well as the illegible signature of the receiving party; and 4) patience is not one of my strong suits. 

Naturally, what happened next was that I was told by the smiling clerk that they had been unable to locate my package. She asked, “Perhaps it was delivered to a different hotel?”  I thought I did an admirable job of controlling my anger, but I noticed the clerk edging away from the desk as I took in this news.  Maybe my eyeballs bulged a little.  I assured her that I had checked with FedEx and had received a delivery confirmation at their hotel several days earlier. 

The manager came out and apologized, promising to look further into the matter.  She offered a free movie rental, which I accepted before leaving on a suddenly necessary trip to the local Hy-Vee supermarket.  I bought a cheap pot and some spaghetti, as well as a few other odds and ends including cereal and milk.  I was too tired to leave the hotel after returning, but I did make use of my free rental to watch “Breach”, a very good movie with Chris Cooper playing the American spy, Robert Hansson.  I took another Ambien, attempted to find a comfortable sleeping position with my Holter monitor, and eventually passed out.

The kitchen in my hotel room.

The Mayo Diary Part 2

Tuesday – Sweating to the Classics

The next morning I returned to the nurses’ desk in the Hilton building and relieved myself, so to speak, of my urine jug.  Shortly afterwards I was unburdened of my Holter monitor and left the Cardio Clinic unfettered and in better spirits.  Next up: the sweat test.  I brought my IPod with me, hoping that a long symphony might keep my mind off of the heat that I was about to experience, but the nurse who would be administering the test told me I shouldn’t use it.   She suggested that the combination of heat, sweat, and the grimy powder I was to be covered with were a good way to damage it, so I left it with my clothes in the changing room.

After changing into a hospital gown, I lied down on a wheeled bed and was given what looked like a large, restaurant-style napkin to cover the pelvic region during the test.  My eyes were fitted with goggles, the hospital gown was removed, and my entire body was then liberally sprinkled from head to toe with a special gold-colored powder that reacts with sweat by turning purple.  

I was then wheeled into a small, windowed heat chamber, where the temperature would be raised to around 140^o F and held there until one of the following occurred: 1) my core temperature rose above 100^o  F,  2) every square inch of exposed skin had turned purple, or 3) I started screaming “I CAN”T TAKE IT ANY MORE!  LET ME OUT OF HERE!!!!!!” (this was not technically part of the test protocol, but I figured it would work).  The goal of the test was to determine if the sweat-response system was functioning correctly, and especially to see if there were differences in response between the right and left side of my body.  My goal was to make it through the test without sneezing or getting powder in my eyes. 

The nurse was a nice woman with a sweet disposition, probably about 40, who I guessed had lived most of her life somewhere in the vicinity of Rochester.   As the test began, she reminded me that she could pipe music into the chamber and asked if I had any requests.  This led to the following surreal exchange:  

I said, “Well, I guess I’d like to listen to some classical music.”

“Classical?  I think we might have some Rod Stewart or Linda Ronstadt.  Would that be OK?”

“I’m sorry, I didn’t mean classic rock – just ‘classical music’ – like a classical symphony.”

“Oh!  (shuffling through CDs)…Well, I think we have something with Charlotte Church.  How about that?”

“Um, no, that’s not really what I meant.  Do you have something older, like maybe Mozart or Beethoven?”

“Oh! (chuckling), THAT type of classical.  I’m sorry! (shuffling through more CDs)…  Here’s one called ‘The Best of Henry Mancini’.  Would that work?”

“Um, maybe I’ll just skip the music.”

“Oh!! (laughing again), sorry, I think we do have something…. it’s called ‘Classical Romantic Favorites.’”

At this point I wasn’t interested in quibbling, so I said, “That sounds fine.”  A few seconds later the speakers came to life and I was serenaded with elevator music.  

The test itself was everything I expected it to be, which is to say that it sucked.  I wasn’t allowed to move a muscle, and it was very hot.  It lasted for nearly a full hour, which was the amount of time it took for every pore in my body to produce a tiny sweat droplet, which reacted with the nearest grain of golden powder and turned it purple. My toes were the final holdout – they always run cold, so this wasn’t a surprise.  I was being given progress reports as my body gradually turned purple, so when the nurse explained what the holdup was, I attempted to use sheer willpower to get my toes warmed up.  I imagined heat flooding my toes with each breath.  I envisioned a fire at the base of my feet.  Finally, I resorted to pleading.  Please sweat, come on, just a little sweat. 

When my toes finally complied the test was officially over. The nurse told me to sit up and take a look at myself.  The sight was both startling and comical.  The powder on my body hair (chest, arms, and legs) remained sparkling gold.  The rest of my body, from head to toe, had turned a deep shade of purple.  I looked like a tall, skinny monster, like a botched experiment to create Mr. Hyde or the Incredible Hulk.  I think Mayo should give this nurse/technician a camera for a post-test, take-home photo (if the patient agrees).  It would be a source of endless amusement – for instance, you could show it to friends as a way to impress them with your breath-holding abilities (“This was taken at the 15-minute mark.”)  And, of course, it would be a marked improvement over any driver’s license photo.   

My next task was to enter the test room’s shower and remove the purple powder. This turned out to be a rather difficult chore, to put it mildly.  I spent the better part of 30 minutes scrubbing away, but substantial areas of skin refused to yield their new color.  I finally gave up and got dressed; splotches of purple would remain on my skin for the better part of two weeks.  For the next couple of days at Mayo, most of the physicians who saw me asked me about my unusual skin discoloration with a concerned look on their faces.    

My next appointment was an Echocardiogram, back in the Cardio Clinic.  The test was scheduled for 1:00 and it was only noon.  Would I have to wait an hour or more to be tested?  No, I wouldn’t, and here I should pause to mention another unusual facet of the Mayo operation.  As I mentioned earlier, I had been given a complete schedule of my appointments before departing on the trip.  After my first appointment Monday morning, the blood draw, I noticed that I would arrive about a half hour early for my ECG.  I also realized after looking at my schedule more carefully that I might end up arriving early for many of my appointments that week.   I mentioned this to the nurse who drew my blood, and she told me that it wasn’t a problem: “Just head on over to Cardio and they’ll fit you in”. 

I was skeptical, but she was right.  I waited a few minutes and was seen well before my scheduled appointment time.  And so it went for the next test…and the next… and so on throughout the week.   I don’t really know how they pull it off, but I was very grateful that the system worked.   Mayo Clinic’s simple mission statement is “The needs of the patient come first.”  I learned during the week that they take this charge very seriously - from the unfailingly friendly staff and physicians to the soothing interiors to the flexible scheduling, everything feels carefully designed for the patient’s well being. 

 

A small example:  many of the waiting rooms have a number of individual cubicles equipped with a chair, a small table, and either a computer with a free internet hookup or a TV.  Another example:  the beautiful grand atrium which divides the Gonda and Mayo buildings features a grand piano with some seating nearby, and many times as I walked by, I noticed a person or even a singing group using the piano to perform for anyone who cared to listen (and many people did stop to enjoy the music).  All of these small touches combine to produce an environment where the patient feels less like a patient and more like a guest.  It’s an original take on how to provide medical care on a large scale, and in my opinion it is, for the most part, a smashing success that should be required study for anyone involved in hospital administration.  Why did I wait to mention all this now?  So Monday’s paranoid digression didn’t look even sillier than it was.  That’s why.  Now, back to the Echocardiogram.

An internet-enabled cubby in one of the Cardiology waiting rooms.  The bald eagle photo was taken by a friend in Colorado.

What happens during an Echo?  You lie on your side while a sonographer (the technician) applies a gel to an ultrasonic device which is then positioned at various points along the ribs to provide 2-D imagery of the heart (I understand that 3-D imagery is becoming available as well).  The Echo measures heart dimensions and blood flow through the various valves.  It is completely non-invasive and can detect a variety of cardiac disorders.  The most fascinating part of the test is that the patient can actually see the images and hear the pumping sounds as they’re being recorded.  I’ve been through several of these procedures, and initially I was a little unnerved by each of my heartbeats being both sensed in my chest and reproduced on a viewing screen.  This time, however, I was fascinated.   I watched the amazing choreography of ventricle beats perfectly timed with the opening and closing of adjacent valves.  It struck me what an incredible organ the heart is.  Just another miracle of the human body, an amazing demonstration of how a fundamentally random process + time (otherwise known as evolution) can produce wondrous  mechanisms so complex that our minds can barely penetrate the full depth of their function.  Or not, depending on your viewpoint.  In any case, at some point over the course of the 30 minute procedure I lost interest in my own heart, and by the end the sonographer and I were talking Vikings and Broncos.  This was the pre-Favre era, so the sonographer was doing a lot of head shaking.  Come to think of it, he’s probably still shaking his head.

After the Echo I had my first consultation with a physician (actually a nurse practitioner, or NP for short).  This was more for her benefit than mine – I was asked in great depth about my health history, and she told me that we would meet again after the completion of my remaining tests.  I returned to the hotel, checked again on my missing food package (still missing), made some spaghetti, watched some basketball and went to sleep.

Wednesday – Are We Having Fun Yet?  

I’m not generally a morning person anyways, but when I woke up Wednesday I knew that something was wrong.  My head hurt, I was a little dizzy, and my stomach felt queasy.  I didn’t know if I was coming down with something or just having a bad day (this happens occasionally with my condition).  What I did know was that my schedule didn’t allow for a day of missed tests, and staying in bed would likely necessitate either staying in Minnesota over the weekend or making a return trip the following week.  I didn’t like either of these options, so I forced myself to get up and prepare for the day.

Fortunately, my first test wasn’t until 11:00 a.m. at Saint Mary’s Hospital (which happened to be directly across the street from my hotel).  Unfortunately, it was a special, more aggressive tilt table test which required fasting that morning until completion of the test.  Given my condition I felt that a small amount of food might help me make it through the test, so I called my NP and asked if it would be a problem if I had a little food a couple of hours beforehand.  She didn’t see an issue, so I had a plate of scrambled eggs. 

I arrived at Saint Mary’s a little before 11 a.m., found the appropriate department, and approached the check-in desk.  I couldn’t wait to get the test over with; I wasn’t feeling any better and just wanted to go back to the hotel and lie down.   After the receptionist found my appointment on her computer, the first thing she asked was whether I had eaten anything that morning.   I mentioned the eggs, and she asked when I ate them.  “Around 9 a.m.”, I said.  She shook her head, called a nurse in, and asked whether the eggs would be a problem.  I was told that they were.  Why is that a problem?  “It’s possible that with food in your stomach the test will cause you to vomit.”   I wasn’t too far from that stage in any event, so this wasn’t good news. 

They rescheduled the test for 12:30 pm, leaving me time to walk back to the hotel and ponder what on earth this test involved that could induce vomiting.  Was it a combo tilt-table and tilt-a-whirl?  I rechecked the detailed appendix in my patient guide, which mentioned a couple of points regarding this particular tilt table test that I hadn’t noticed before.  The first point was that I was to be strapped in and held upright for almost an hour.  The second was that the end of the test involved something called the “Isuprel Challenge”, during which I would be administered an epinephrine-like drug through an IV to see if I could be induced to pass out.  Good times!  I returned to the hospital with a stomach devoid of food but full of anxiety. 

As I was being hooked up to my IV while lying on a hospital bed, the nurse asked me where I was from and we started talking about traveling.  Her first anecdote was a story where she was on a flight with her kids while she had a stomach virus, and she laughed as she reflected on the “3 or 4 times” that she had to run to the back of the plane to throw up.   Um, could we change the subject?  I was now really dreading the test, and as I was wheeled into the test lab my entire goal was to make it through the hour without getting sick.

Thankfully, the test didn’t induce either vomiting or fainting (the Isuprel caused hot flashes but nothing else).  Not that it was pleasant - I would describe the experience as an hour-long Festival of Discomfort, starring my overachieving heart, which for the last ½ hour or so was beating with enough force that it seemed to be attempting to escape my rib cage.  As during my first tilt-test, the nurses remained quiet except for occasional whispers every few minutes.  After I was unstrapped from the table and the IV was removed, I was given a little apple juice and a couple of saltines and sent on my way.

I had time to return to the hotel for a little more food before driving back to the Gonda  building for yet another trip to the Cardiology Clinic.  Next up was an exciting event - my final test of the week – a Cardiovascular Stress Test.  I was now feeling a little better, and since regular, albeit limited, exercise has been a part of my weekly routine for many years, it felt like just another trip to the gym. 

I had electrodes attached to various parts of my torso and a mask which measured oxygen flow placed over my mouth (just like at the gym).  I then began walking on a treadmill, first very slowly with no incline and then, at intervals, increasing speeds and inclination until I felt that my exertion level was “very hard”.  This took about 15 minutes or so.  Judging by the reaction of the nurses, my endurance level is relatively high for POTS patients -  they were smiling and congratulating me and in general acting as though my ability to walk quickly was a tremendous accomplishment.  Maybe they were right. 

I returned to the hotel, stopped at check-in, and asked again about my food package.  I knew something was up, because the clerk immediately fetched the manager.  She told me that they had finally located my package.  Thus began my second surreal conversation of the week:

“Great!  Where is it? Do you have it?”

“Well, no, it’s not here.”

I paused for a beat...deep breaths...“OK. Where is it?”

“It’s in Wisconsin.”

“Wisconsin?”

I looked at the manager with my mouth slightly ajar, waiting for an explanation.  

She explained, “A woman in Wisconsin called the hotel saying that we had apparently shipped her a package by mistake, and after further inquiries we confirmed that it is in fact the package that you shipped to the hotel.”

 “So you’re telling me that you received my package, and that, rather than hold it for my arrival, you instead shipped it to a random person in another state?”

“That seems to be the case, yes.  We’re very sorry.  If you still want it, we can have it sent overnight and you’ll have it by tomorrow.”

I explained that this would allow me to consume only one or two of the six self-heating meals that I had purchased specially for this trip, and that although I would still like the package I felt that they should compensate me for the cost of the food.  They were nice enough to do this, and I resisted the urge to grab a “HOW ARE WE DOING?” survey card from the counter and fill it with scathing remarks.  It was, after all, an honest mistake.  Who hasn’t received a package and then accidentally shipped it to Wisconsin? I went back to my room and had another plate of spaghetti.   I realized it was probably a good thing that I hadn’t asked the hotel to hold my urine jug overnight. 

Thursday-Friday:  Results and Returning Home

The last day and a half was filled with consultations.  I won’t bore you with the details – they were both the most important and least interesting part of the trip.  I was seen by a cardiologist, a neurologist, an exercise cardiologist, a psychiatrist, my nurse practitioner, and finally by a physical therapist.  After three solid days of testing, this was the bottom line:  my body is generally healthy, except that I have POTS syndrome.  I was told that this is not a dangerous condition but can be quite disabling (I had pretty much worked this out on my own, but it was still reassuring to hear it from someone else). 

I was told that there is at present no cure for POTS, but a few measures could be taken to improve my condition.  These included a dramatic increase in salt intake (up to 10g per day!), raising the head of my bed a few inches above the foot, and taking steps to improve cardiovascular performance by increasing exercise tolerance. I was told that undertaking these measures could dramatically improve my symptoms.*

*As of this writing, over a year has passed since my visit and I’ve seen some improvement but nothing dramatic.

I zipped back to Minneapolis in the M35, caught my flight to Denver, and eventually arrived at my door about a half hour before sunset.

Was the trip worth it?  Yes.  I think anyone living with a poorly understood illness is often doubly burdened - by both the physical symptoms and by unending doubt.  Is this really what I have?  Why do I have all these strange symptoms?  What if it’s something more serious?  What if there’s nothing physically wrong – it’s all in my head?   Am I just depressed?  Do I push myself to go to the dinner or do I just stay home?  What's wrong with the Rockies' bullpen?  And so on.

For me, the understanding I gained of my own condition freed me from most of these doubts (they still pop up from time to time) and allowed me to view myself and my body through a clear lens.  I have days that are relatively high functioning and days where all I can manage is to take care of my basic needs and make it through the day.  What I don’t have is the health of my prior life, before an unknown virus swept through my body in March of 1989 and left POTS syndrome in its wake.  I know that I’ll probably never be fully healthy again, and my visit to Mayo helped me to clarify and accept this reality.  I haven’t embraced it yet, but I’m still trying.