Death by Christmas Lights Saga IV

Prologue

Christmas has always been an exciting, joyful time for me as a child, and still is today as an adult . Growing up, there were family gatherings, presents, and snow, with snowball fights, and presents, and snow forts, with snow tunnels, and presents, and sledding and skiing and presents and Christmas trees with decorations and presents.  The only thing that was missing was outdoor Christmas lights. Once I became a homeowner, I decided I would have outdoor Christmas lights.

The first Saturday after Thanksgiving in 2010, I did what by then had become a tradition of hanging outdoor lights.  I’m sure it is a somewhat comic spectacle watching me zip around the front yard in my little red scooter setting up the outdoor array.  After perfectly positioning a string of lights, I returned to the bucket of decorations in the driveway.   I leaned down to my right, reaching into the bucket.  Grabbing two handfuls of string lights, I began righting myself, and the scooter tipped over.  Not wanting the glass I held to shatter and slice my hands, I broke my fall with my elbows.  They ached slightly,  but my sleeves had no rips after my fall.  I continued hanging lights.  That night, taking off my shirt, I noticed a quarter sized abrasion on my left elbow.  I thought it was nothing of concern.  “Just a flesh wound,” I muttered to myself. Nothing so innocuous and insignificant as a scrape could have  devastating consequences.   Boy, was I wrong.

Conclusion

Antibiotic associated diarrhea wasn't the only "fun" of my nine-day hospital stay.  Immediately after surgery, my arm started regaining its pinkish, humanoid appearance.  It was still markedly swollen. So, back in the makeshift IV pole sling I went, an apparatus that felt more like a Medieval torture device then modern medical ingenuity.  I spent both awake and sleep hours with my arm elevated above my heart pointed to the ceiling, 24/7. The extreme discomfort of this position prevented me from sleeping at no more than 20 to 30 minutes at a time, with seemingly hours of restlessness in between.  During these sleepless nights, my mind would wander to dark places that, in retrospect disturb me, but at the time seemed completely reasonable.

At night the darkness in my room led to loneliness, that turned the discomfort of the sling into agony and despair.  “Why me?” would run through my mind like a broken record.  I thought about everything that MS has taken from me, starting with my young adult self all the way to the present.  An intense and profound sadness over “what could have been, should have been” deepened the abyss.  I just wanted it to end, all of it to end.  Fortunately, thoughts of my wife and children would break through my melancholy and yank me back into the light.

What a waste that would have been had it ended.  I would have missed out on so much life.  Ironically, much of my experiences I owe to my disease.  Without it, opportunities to try new sports, such as wheelchair waterskiing, or experience old ones in new ways, like wheelchair snow skiing, would have never presented themselves to me. Thanks to MS, I don’t have to wait in line for rides at amusement parks or at airport security, and I get great parking.   Without it, I never would have been honored by the local MS society as the 2010 Gateway Area MS Society Chapter, Father of the Year.  I would not have done the radio and television public service announcements that went along with the award.  More importantly I would have missed out on watching my children grow and succeed as they each have, and Abigail never would have been.

Shortly after being discharged from the hospital, I told my friend Don about my ordeal with septic bursitis.  I talked about the ambulance ride, my blood pressure dropping in the ER, my swelling left arm.  We shared jokes and laughs about what I had gone through, like old friends do.  As I told about my high fevers and sweats, delirium fueled dreams, and disturbing thoughts and feelings, he quieted, no jokes, no laughter.  He just listened.  When I finished telling my saga,  Don was uncharacteristically silent.  I realized then just how close to widowing my wife and orphaning my kids I had been.  After a few moments, he broke the silence by saying, “Who’da thunkit, man, death by Christmas lights.”

Death by Christmas Lights Saga III

Despite heavy doses of high-power antibiotics, my arm continued to swell and become even deeper purple until it looked more like it belonged to the popular kids’ show character Barney the Dinosaur than me. My temperature still spiked periodically.  My health continued its downward spiral.  Dr. Irvine decided on Friday night to take me to the operating room for an intra-operative incision and drainage on Saturday morning.

Hospital transport wheeled me to the OR the next morning.  They placed me in a private pre-op holding room.  My wife by my side holding my hand, provided comfort, strength, courage, and most of all love.  Through her touch, I heard “You better come back to me.  We need you.”  

A nurse fluttered around the room prepping me for surgery. The anesthesiologist joined us briefly asking me about previous surgeries, allergies to medications, any history of adverse drug reactions.  All to which I replied “no, except for an ‘appy’ (medicaleese for appendectomy) in 2002”.  Dr. Irvine came in briefly to answer any last minute questions.  A kiss on the forehead from My wife, and the procession to the OR began.

Even though I had been a surgeon-in-training in my “previous life” and had been involved in hundreds of surgical procedures, most much more serious than what I was about to experience, a small part of me felt fear. My thoughts and concerns were less about fear of not surviving the surgery, but rather how my family would go on living if I didn’t.  As my procession passed through the large wooden automatic double doors into the OR suite, my coherent narrative ends thanks to the preoperative sedative administered by the anesthesiologist prior to leaving my holding room.

Looking down at my arm when I woke from surgery and once the anesthesia had worn off, two things relieved me. The first, I was still alive.  The second, my arm no longer looked like it belonged to Barney but a plumper, pinker version of me.  Hospital transport returned me to my room and the “real fun” began.  By “real fun” I'm not referring to the daily physical therapy sessions or the uncomfortable sleepless nights with my arm elevated, pointing to the ceiling in the modified IV pole sling.

Antibiotics not only kill bad bacteria, like the presumed staphylococcus that was attacking me, they also kill good bacteria we need to maintain life.  Bacteria live in everyone’s intestinal tracts facilitating digestion and absorption of nutrients, i.e. food.  Much to most people's surprise -and sometimes disgust- bacteria is necessary to live.   Antibiotics can cause the healthy balance of the normal bacteria residing in the colon to become altered.  When this happens antibiotic associated diarrhea develops, resulting in a watery, frequent, and sometimes explosive diarrhea.  Being a mobility challenged person, I have difficulty outrunning the “runs” as it is.  Giving them a head start is just unfair and downright sucks!  

The first few times I found myself in the position of needing help with the “mess” I had just made of myself, my bed, and sometimes the floor was mortifyingly embarrassing.  After a while I resigned myself to the fact that it was outside of my control, a humbling experience.  I just had to accept that I needed these often times young, cute nurses to run washcloths all over my backside, perineum, and genitals, areas that I had reserved only for my wife. A concept to which my good friend, the older brother I never had, and best man, Don, later said, “Damn, I’d be shittin’ constantly”.

Death by Christmas Lights Saga II

"Sepsis" was the answer my wife heard in response to her question of "What could be causing this?" Although other possibilities were given, this was the only word she heard. My wife began to weep quietly as the emergency room staff scurried around me in an effort to elevate my blood pressure. My gurney was placed in Trendelenburg, elevating my feet above my head. IVs were run "wide-open "to "push "fluids. Everyone's attention was on me. No one, not even me, noticed my wife sitting in a chair in the corner with quiet tears running down her cheeks.  We had lost our first born child, Alyssa, to sepsis 16 years before, to the month. Now she was faced with the possibility of losing her husband to the same.

Test results came back. "The usual suspects "were ruled out. Since no explanation for my symptoms were identified, I was admitted with the expectation of whatever was causing my symptoms would declare itself by morning.  

That night I dreamt that I was floating in a sea of white translucent balloons.  Slowly, one by one, balloons began popping, the pops gradually growing more rapid.  As more and more balloons popped, I could see vague silhouettes of bodies and tops of heads scattered in the distance around and below me.  Suddenly I was awoken by a deafening POP by my head.  A nurse stood over me placing a cold pack on my sweaty forehead.  My clothes were soaked, my body drenched with sweat and covered by cold packs.  She informed me I had a temperature of 105F and was trying to cool me down.  The nurse placed her last pack and left the room.  I went back to sleep.

I woke in the morning to a horrifying sight.  The swelling and dusky, purplish discoloration of my left elbow had extended up to my left shoulder and down to my fingers, which looked more like pudgy sausage links than digits.  The swelling made the joints of my arm and hand stiff and difficult to flex.  

Hospital transport took me to radiology for an MRI of my elbow.  Again, I was treated to the MRI’s cacophonic symphony, only this time I was unable to endure the entire performance.  The loudness of the deafening “duff-duffs”, “blop-blops” “screeeeeches” and “rat-tat-tats” ricocheted and frenzied through my head as severe claustrophobia from being in the tight, narrow tube-like opening of the MRI scanner gradually overtook me.  I shouted “I CAN’T TAKE THIS ANYMORE!”  The test was halted.  Fortunately I lasted long enough before panicking  for them to get “what they needed”.

Later that morning, Dr. Irvine, the orthopedic surgeon, performed a bedside I&D (incision and drainage) of my elbow WITHOUT LOCAL ANESTHESIA.  Before he could finish explaining to me how the local would prolong the pain and procedure, it was over.  Although, I did feel some discomfort, more like popping a zit than slicing through skin.  His assistant then elevated my arm using a sling of gauze wrapped around my elbow extending to an IV pole raised to the ceiling to keep my arm elevated above my heart.  This was done in an attempt to help drain edema fluid from my arm decreasing the swelling, an unsuccessful concept at best.

Early that afternoon the Calvary arrived, Dr. Farin Manian.  Dr. Manian, an infectious disease specialist I had the fortune of being treated by two years previously for abdominal cellulose took charge of m.y case.   With him managing my care, a relaxed sense of relief came over me.  His calm, confident demeanor and assuring bedside manner conveyed “Its going to be OK my friend.  I’m here.”

Death by Christmas Lights Saga - I

“There’s your problem right there,” said the hospitalist as he lifted my left elbow, in my newly occupied room at St John’s hospital, during my admission history and physical.  As I looked at my elbow, I saw a sight that wasn’t there 2 hours earlier in the Emergency Department.  My left elbow had dusky, purplish discoloration and was swollen to approximately three times its normal size.  Finally, what was happening to me started making sense.  However, what was about to come, I never would have imagined.

It was Wednesday, December 1, 2010.  Early that morning I had awoken with night sweats, shaking chills, and a high fever.  With my wife’s help, I headed to the bathroom thinking my symptoms were caused by the Betaseron injection I had administered prior to going to bed that evening.  These symptoms are not uncommon side effects to patients taking betaseron.  I had become all too familiar with them over the previous sixteen years, however, occurring less frequently the previous decade or so...and less severe.

I crawled back to bed, thinking that sleeping the few hours left till sunrise would help me recover my strength.  It didn’t.  When I woke at 6:45, my symptoms had worsened.  “Maybe a few more hours of sleep” I thought. I informed work I was using a sick day and went back to bed.  I woke up at noon feeling even worse.  Unable to open my eyes, let alone get out of bed, I knew it was more than a reaction.  Something bad was happening.  My wife called an ambulance.  

In addition to an ambulance, two fire trucks and three police cars came I’m told.  I have no recollection.  Despite not being able to open my eyes, I mapped the route we took by the turns the ambulance made and was able to fairly accurately tell where we were.  Even in my altered state, the fun loving jokester in me persisted.  When the ambulance was almost to St. John’s Hospital, I asked for the siren to be turned on.  After all I WAS in an ambulance.

Being brought in by ambulance to the emergency room is a great way to avoid the typical several hours ER waiting room wait.  Though I don’t recommend it.

Once in the ER, the scripted, controlled chaos of the medical staff began as it does for any patient brought in by ambulance.  IVs were inserted into my veins for hydration and potential medication administration.  A blood pressure cuff was strapped to my left arm.  A pulse-oximeter was applied to my finger to monitor the oxygen content of my blood.  EKG leads were applied to my chest to monitor my heart rhythm.  Chest X-rays, urine, sputum, and blood were obtained.  All to “rule out the usual suspects”.

As I lay on the gurney in the room, waiting with my wife for my test results, I began noticing a dull, intermittent irritation to my left posterior elbow, the intensity and caliber of which worsened seemingly unnoticed as the hours past.  By early evening, the dull irritation transformed into a sensation of hundreds of tiny little needles, rapidly jabbing into the skin of the back of my elbow.

“Uh, Dr. Yanuck, are you feeling okay?” a nurse asked.  “Aside from being on a gurney with IVs and monitors strapped to me in an emergency room, I’m doing great.” my jokester replied.    Why do you ask?”  

“Is your blood pressure usually 90/60?”

“Ruh Roh.”  This was definitely no side effect.

-To be continued-

Having Fun

Just because you're disabled doesn't mean you can't have fun.

“Hit it!” I yelled.  A split second later, the boat engine revved, yanking me and my partially submerged water ski from its resting position, tip of the ski extending from the water towards the sky, to an upright, horizontal position.  I began gliding and cutting back and forth atop the wake of water created by the speeding boat.

I’ve been attending the annual disabled water ski event at Creve Coeur Lake for well over a decade. I look forward to these outings all year. It is a rare chance for me to feel ”normal”, or at least as close to normal as I remember normal feeling, if at least only for a few hours. The endorphin rush I get as I glide, balance, steer, and even sometimes jump across the water, wind in my face, water spraying over me, is much like the feelings I used to get while playing competitive sports, snow skiing, or performing music.  Even the “wipeouts”, though sometimes mildly uncomfortable, can be exhilarating.

This year’s event on Saturday, August 2, 2014, was my best ski outing to date.  I jumped the wake several times.  One time, I caught big air, but couldn’t stick the landing, resulting in a tail over tip somersault with a huge burst of water spray.  The next time I caught big air, I stuck the landing!  Only this time, the hard “thunk” of the ski returning to the water knocked my grip on the rope’s handle loose, and I coasted to a halt, then sank.

To individuals with a disability, water is the great equalizer.  Its buoyancy, which counterbalances gravity, diminishes its effects, and allows me to move my extremities more easily. In water, I feel free from my MS riddled prison of a body.   I find myself able to walk, run, and jump. Activities I have not been able to do on land for almost 20 years. Although other water activities provide an opportunity for this feeling of freedom, they are nowhere near as fun as riding a ski atop the water at 20-25 mph.

New skiers and volunteers attend dry land training the day before the ski event.  Here, volunteers are trained, and athletes are water tested to ensure they can keep from drowning.  Basically, making sure they can at least turn their face towards the sky, keeping their mouth out of the water.  They are also taught to ski.  While the ‘newbie’s’ are oriented and trained, a few of us veteran skiers get the opportunity for more time on the water skiing by serving as “crash test dummies” for the new in-boat volunteers.  

My friend and fellow MS survivor, Pat, and her husband, Phil, drove 2 hours from Columbia, MO, to participate in waterskiing for the first time.  While I was on the lake skiing, being a “dummy”, they were on the beach getting trained and oriented.  Later that evening, Pat told Phil, in a glum somewhat defeated voice, reminiscent of Winnie-the-pooh’s friend Eeyore, “I don't think I’m going to ski tomorrow.”

The next day, after seeing the huge smiles on the faces of the skiers coming back from the water, she decided, with some trepidation, to ski.  After taking four laps around the lake, she returned to shore, hair still dry, with the biggest smile of anyone there, and exclaimed, “This is the best run event for the disabled I've ever been to. It's like walking into a big warm fuzzy hug.”

Fountain of Youth

“Rudy! You found it!  You found it!  It does exist!” exclaimed Henry McFarland as he burst through the door, entering the examination room that my wife and I were in at the Clinical Center at the National Institutes of Health.  “Tell me where it is!  You gotta share!  You found it!  You gotta tell me where it is!”  My wife and I exchanged quizzical glances.  THIS is Dr. Henry McFarland?  THIS is NIH’s expert and lead multiple sclerosis researcher? “Tell me where it is! You found the Fountain of Youth!”  He had not lost his mind after all.  “You must be thinking of my father,’” I replied with a grin of relief.  Roughly twenty years earlier, my dad, Rudolph Raymond Yanuck, Jr., and two of his sisters with MS had traveled to NIH and saw Dr. McFarland.  As an icebreaker, Dr. McFarland’s joke was to put me at ease.  My name is Rudolph Raymond Yanuck, III.

It was Monday, October 24, 1994.  Two days earlier I had seen Admiral Kurtzke who had officially given me my “death sentence,” multiple sclerosis.  By “death sentence,” I don’t mean I’m going to die OF it.  I’m going to die WITH it.  Multiple sclerosis will not itself make my life any shorter, it just might make it miserable.  But to quote Richard Cohen, husband of Meredith Viera, formerly of “The Today Show”, MS survivor, and former CBS producer, “a miserable life is better than no life at all.”

The appointment went much like the one with Dr. Kurtzke.  Dr. McFarland reviewed my medical history, test results, and performed a neurologic examination, only this time there was no audience, lecturing, or “pimping” of medical students, an acronym for “put in my place”.  There was only me, my wife, and Dr. McFarland.  Dr. McFarland’s treatment advice differed from Dr. Kurtzke’s.

Interferon beta-1b, also known as Betaseron, had recently been approved by the FDA for the treatment of multiple sclerosis as the first disease modifying medication, self administered by subcutaneous injections every other day.  It was not a cure, but slowed disease progression, something not available to previous generations of MS patients.  Dr. Kurtzke felt that since my disease was not yet disabling, I should wait until that time when disability emerges to begin Betaseron.  Advice I liked.  Dr. McFarland was of a different opinion.  His advice was to begin betaseron “yesterday”- a prospect I did not relish ( I did not like the idea of every other day injections - yes, even doctors can be afraid of needles.  So we made a deal.  If a gadolinium enhanced MRI showed active disease, I would start treatment.  If active disease was not seen, I would postpone treatment as Dr. Kurtzke recommended.

A few days later, for the second time of many, I lay supine on the MRI table with a cage placed over my head looking like a hockey goalie or baseball catcher.  The table slid into the scanner,  positioning my head and body in the narrow opening.  “!-!-!” went the scanner, then silence.  Suddenly a loud “gnweuew”, followed by “dupt-dupt-dupt-dupt-dupt-dupt, blop-blop-blop -blop-blop-blop-blop, doof-doof-doof -doof-doof-doof-doof, rat-tat-tat-tat tat-tat-tat.”  The cacophony would have been deafening without the headphones on my ears.  Then silence.  A few seconds later the second cacophonic movement began.

“Active disease seen.”  Let the misery begin.

It's a Duck

“Right this way Lieutenant” said the Petty Officer, directing my wife and I through a darkened doorway.  Across the dark room, I saw a thin bright light shining between floor to ceiling curtains.  Our guide ushered us towards the sliver of light which grew in width and intensity as we walked nearer to it.  I was able to see three empty chairs through the curtains, one chair facing two.  Once through the curtains, I realized the darkened room was actually the side stage area of the Naval Hospital’s auditorium.  We were on the stage!  Looking out into the audience I saw approximately 50 of the seats occupied by eager, young faced, uniformed interns and residents, some of whom I knew personally.  Instantly, what was about to take place became apparent.  It was October 22, 1994 at the National Naval Medical Center in Bethesda, MD.  For what I had thought I was sent to Bethesda, an expert second opinion by Dr. John Kurtzke, was actually the monthly neurology lecture given to the Naval Hospitals’ house staff by Admiral Kutzke.  I was the subject of the day.

Dr. Kurtzke, a pioneering neuro epidemiologist, who is best known for his creation of the Expanded Disability Status Scale in 1983, still universally utilized by the medical community, was a professor of neurology at Georgetown University and  Rear Admiral in the US Naval Reserves.  His “one weekend a month” was spent at the Naval Hospital in Bethesda, lecturing residents and consulting on difficult cases.  Was I a difficult case?  Likely not.  But as Phil Catron, my neurologist back at the San Diego Naval Medical Center said, “Let’s let the expert make the call”.

Earlier that week, my wife, who had just entered the third trimester of a twin pregnancy, and I boarded a military MedEvac flight, leaving from Marine Corps Air Station Miramar in San Diego, CA.  The Airforce C-17 MedEvac plane had been configured to transport gurneyed, as well as rear facing seated patients and passengers.  The plane zig-zagged across the western half of the country from air base to air base for the next twelve hours, picking up and dropping off patients and passengers along the way.  Eleven take offs and landings in total.  Finally, exhausted from hours of sitting and what seemed like flying thousands of miles, the cockpit announced that we were landing at our final destination for the evening.  I looked out my window and caught my first ever glimpse of breath taking landmarks that up till then I had only heard about and seen pictures of in textbooks, and thought would likely never see again.  Just outside my window, so close it felt as though I could touch it, was the illuminated Gateway Arch standing majestically alongside the “Mighty Mississippi” River.  Moments later our plane touched down at Scott Air Force Base.

Our flight to Bethesda, we were informed was to takeoff in two days.  My wife and I spent most of our wait enjoying our “posh” accommodations which consisted of a hospital room with two hospital beds and a bathroom.  We did, however, wander the grounds and catch a movie at the post cinema.  The following morning, we boarded another C-17 MedEvac plane and continued our trip to Andrews Air Force Base in Maryland, only this time we zig-zagged across the eastern half of the country.  After landing and a short military bus ride, I reported to the Bethesda Naval Hospital for “duty”.

The next morning, Admiral Kurtzke, in dress blue uniform, sitting opposite my wife and me, also in dress blues, on stage, and in front of watchful eyes eager to soak in the knowledge, expertise, and wisdom that Dr. Kurtze possessed, reviewed my medical history, test results, and performed a neurologic exam on me.  Periodically he lectured to and asked questions, a practice commonly known in the world of medical education as “pimping”, derived from “put in my place”, of the audience.  At the end of the “pimp” session, Dr. Kurtzke turned his attention back to my wife and me.  In his gruff but comforting voice he said “Well, I tell ya, it’s looking like a duck.  It’s waddling like a duck.  And I’ll be, if it ain’t quackin’ like a duck.  Dr. Yanuck, its a duck.  You have multiple sclerosis.”