Atlanta, GA

Life With Lupus: Mortality

TJ Wolf

Life With Lupus: Mortality

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Stress Trip

Of the multiple Transient Ischemic Attacks (TIAs) or mini strokes its believed I've suffered as a result of my Systemic Lupus Erythematosus (SLE) and Anti-Phospholipid Antibody Syndrome (APS), the most public occurrence was on a plane at Hartsfield-Jackson Atlanta International Airport. I was summoned down to my company's Florida office that morning for a "critical" offsite meeting about why teams weren't performing and meeting deadlines. So I booked a flight from Chattanooga to Atlanta to West Palm Beach for that evening.

Even before the summoning by the CEO, I wasn't feeling well that day. I was flushed, fatigued, felt agitated, and had significant abdominal pain. At this point, I had no diagnosis of Lupus yet, so I attributed it to the various digestive, stress, and anxiety diagnoses I received over the years.

I remember stopping for an Iced Coffee to get some energy for the drive to the airport. I drank some at each stop or red light, all the while feeling worse and worse. My abdomen was killing me and my head ached incredibly. I even wondered if my Iced Coffee was accidentally poisoned with some coffee pot cleaning solution or something else as my symptoms rapidly worsened. But I was a dedicated company person, so I pushed through to Chattanooga and the first 20 minute flight hop to Atlanta.

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Warning Sign?

As I took the train the between the terminals in Atlanta to get to my West Palm Beach fligh gate, I texted my wife that I had arrived safely, but wasn't feeling well. I even sent her a text picture of how my Raynaud's was turning my hands white and purple. This Raynaud's event all the while I was sweating from the warm and humid air on this rainy evening in Atlanta.

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Pictured - my actual hand when Raynaud's is triggered.

Window Seat

After the usual stressful, crowded, and disorderly wait at the gate to board, I was finally in my window seat of the plane. My head was pounding and I felt nausea, so I rolled my pullover sweatshirt into a ball to serve as a pillow and leaned against the window in an effort to sleep until all this passed. As the plan taxied to the runway, the pain in my head and abdomen worsened. Then suddenly ringing in my ears, fuzziness and an aura effect, and the feeling of passing out or losing control. I hit the Flight Attendant call button. We were third in line for take off at the time. The flight attendants were seated and strapped in about 3 rows ahead of my seat on this 757. I remember her yelling back something like "Sir! We are about to takeoff!". I tried to stand and and asked the person seated next to me to allow me out of the row. I remember her saying "I think we are about to takeoff" and then I went weak, limp, and fell backwards into my seat. My vision blackened and I lost conscientiousness.

Sir Can You Hear Me?

Next thing I hear someone saying loudly "Sir? Sir? Can you hear me?" as I regain awareness. I also someone different is seated next to me. Flight attendants and different people are also standing and surrounding the row I am in. I seemed to pop awake, ears still ringing, soaked in sweat, and with sweat pouring down my face and back. I replied "Yes, I can hear you". I recall being disoriented and unsure what happened and for how long. People started asking me questions about medical history, was I drinking, medications, etc. All my answers were "No". I heard the Captain announce there was medical emergency, we were returning to the gate, and ask "are there any Doctors or medical personnel on board?"

People who stated they were a doctor and nurse were now seated next to me. I was given a wet paper towel on my neck. I grabbed the air sickness bag and vomited a small amount. I heard the doctor talking to the person who was previously seated next to me. She said when I was unconscious my hands and arms were shaking. I heard the Doctor say it sounded like a seizure to him.

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Back To The Gate

Back at the gate, the plane was met by airport paramedics. They asked if I could stand and helped me up from my seat. I remember apologizing to all around me. Someone grabbed my backpack with my work laptop for me. I was woozy and dizzy like I was drunk. I also felt concussed like I'd been slammed in the head with a baseball bat. Once off the plane, they put me in some kind of wheel chair to get me down the jetway. Back out in the terminal I was still feeling out of it, similar to that feeling of awakening from anesthesia. My shirt and undershirt were soaked as though I wore each into a pool. They asked me questions, took my pulse and blood pressure. I don't remember what the readings were. Nor do I remember anyone's faces from the flight or the paramedics.

Hospital

They offered to take me to the hospital, but I was confused and could only think of how would my wife find me? I didn't want her driving to Atlanta at night in the rain. And what about my car? It was in Chattanooga? I can't go to the hospital, how would I get my car? And what about the meeting in Florida?

I felt out of it and confused, nothing made sense, so I refused the hospital trip. Finally I remembered to call my wife and say what just happened. The paramedics had me sign off and departed. An airline employee came over and handed me an upgraded first class ticket for the next flight to Florida.

The Heck With The Trip

I still felt waves of nausea, a head ache like the worst hangover in history, and abdominal pain. I grabbed my stuff and headed for the terminal's nearby fast food restaraunt. I wanted to get a soda in an effort to settle my stomach. I made it 2 gates and was down on my knees in front of some chairs with dizziness and exhaustion. I pulled myself into the chairs. Rested for about 15 minutes, then tried again. Same result. So I emailed my bosses and said I was ill and couldn't make the trip. I said what happened and mentioned what the "Doctor" from the plane said: "possible seizure". One asked if I was okay. The other asked if I could make the trip anyway.

Homeward

Finally I felt enough energy to stand, got the soda, and went to the same airline employee who gave me the ticket. He was very kind and helpful. Set me up with a free hotel room to rest, and booked me on a return flight to Chattanooga the next morning. I slowly found my way to the hotel shuttle and pretty much collapsed in the bed the minute I entered the room. The next day I still suffered from nausea, pain, headache, and that hungover feeling. I made the flight, drove homeward (probably not a good idea in retrospect), and headed to our local walk in clinic. There I was told "You should have gone to the hospital last night". All readings were okay other than my heart rate seemed very high. They attributed it to the excitement and white coat syndrome if I recall. The attributed my fatigure, exhaustion, headache, and abdominal pain to blood pressure and excitement.

Long Story

So if you are still reading, a long story as a preface of getting to the point, right?

This was one of multiple unexplained "syncopy events" that I experienced between 2009 and 2016. Sometimes my left arm would go numb, sometimes I would lose my vision in one or both eyes, I would lose balance and catch myself or fall, have trouble speaking, once I even stuttered for a while afterward for the first time in my life, and each time there would be an aura effect that led to blackness and unconsciousness.

Diagnosis

When I was finally diagnosed accurately with Systemic Lupus Erythematosus (SLE) with undisputable proof via blood tests, those same blood tests revealed active disease, rapid blood clotting, and Anti-Phospholipid Antibodies. All those factors led to my Rheumatologist informing me that I was at extreme risk for Heart Attack, Stroke, Deep Vein Thrombosis (DVT), and clots. I told both he and a Neurologist about the syncopy events and what was happening each time. That coupled with the evidence in my blood tests caused them to diagnose the events as probable Transient Ischemic Attacks (TIAs or mini strokes). I was sent for Brain MRI which fortunately revealed no evidence of current clots or damage from any past clots.

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Lupus Mortality

So the thing about having Lupus is that "you know neither the day nor the hour". And of course you can say that whether healthy or not right? But with Lupus the mortality tables are stacked against you more.

When I've asked the question openly, my physicians have responded that many people my age, and with my type of Lupus do succumb to catastrophic cardiovascular events.

But my Rheumatologist also said they have a female patient with Lupus who is 90 years old.

Impact

When I was first diagnosed and warned about my extreme risk, I would go to bed wondering if I would wake up the next day. I stopped buying clothes for the next season. I figured I wouldn't be around to wear them. I also started finding more donations and things to sell that I owned, so I wouldn't leave such a mess for my wife to clean up. I took advantage of any life insurance amounts that did not require health questions. Insurance companies that did require health questions, said they would check about my illness, but of course never even called me back.

That time was obviously a low point for me, but I've gotten past that kind of thinking and the associated fears. I still keep my life insurance policies paid, but I look forward to the next day, the next season, and the next years when I go to bed at night.

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Others With Lupus

For others with Lupus, they face their own comorbidities related to the disease. They also experience many of the same fears. Many with Lupus suffer major organ damage and organ shutdown. One of the highest percentage organs that is attacked is the kidneys. Others can experience inflammation of the heart, lungs, liver, pancreas, and digestive system. Some can also develop other illnesses from the medications taken for Lupus such as various cancers.

It's a particularly nasty disease that causes those of us with it to both suffer daily and worry over what is to come.

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My primary mission is to spread awareness about the disease Systemic Lupus Erythematosus (SLE) and many of its comorbidities. Given most physical activities cause me pain nowadays, I've taken on writing as a new hobby, form of therapy, and method to interact with others. You will find I also experiment with articles related to business and careers.

Atlanta, GA
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