My COVID-19 Long Haul Nightmare

UPDATE: I've been talking to my childhood friend and NBC News correspondent Tom Costello about my journey. Tom included me in part of his story on new clinical trials from Eli Lilly last night (8/4/2020) on NBC Nightly News with Lester Holt. More awareness around those suffering from long haul effects and potential hope with new trials. 

 

As I begin to write my first update in nearly two months, my chest is on fire. I've explained that it feels like someone set a leather wallet to dry out on the rocks surrounding a campfire. After an hour, pluck the wallet from the stones and insert it into my chest; that's what it feels like. The coins inside the wallet continue to generate heat. There's a smoldering effect that I can feel with each labored breath. 

I would say that's the toughest symptom I'm dealing with today, but you could fry an egg on my forehead. Today marks my seventy first day of running a fever. Not raging, but all but a few of those days hit 100-101. To say it's debilitating and demoralizing is an understatement. Imagine your worst flu with a fever--it's normally gone within 48 hours (the fever anyway.) Now imagine getting on that ride for six months.

Where I last left you hanging in this feverish journey (Elephant in the Room who Couldn't Breath,) I was optimistic about seeking care at National Jewish Health which is like the Mayo clinic of the country (or world) for lungs. After several additional tests; loads of blood work, my third swab, and third anti-body test, my third CT scan, second echo cardiogram with saline, and a full body PET scan; my lungs and heart have been given a clean bill of health. The care and compassion I've received over the last six months have been exemplary, but I've drawn the conclusion that I got COVID-19 in January and I'm what's known as a long hauler. Not a trucker, but the worst set of symptoms you can imagine that linger without much change or end in sight. 

I say, "not much change," but have to clarify that. There are no good days. There are some days that aren't as bad as others. Within the day, my symptoms change like Violet Beauregard's gum. Mornings used to start "tame' with normal blood oxygen levels and temperature. Continuing to work, my temperature would spike around 4PM. Lately, that's mid-morning. I've had episodes waking up unable to breath. My feet are on fire at the end of the day and my legs twitch in bed at night. Not your average twitches, more like donkey kicks. I was up at 3 AM twice in the last week with everything out of order and my only comfort is running cold water on my legs. 

Violet's gum regularly delivers the usual fatigue and flu-like symptoms. I haven't had the classic chills much lately, more like smoldering under the sheets. We've set up a the guest room in the basement where it's much cooler at night. I call it the "witching hour" where symptoms start wearing me down during the day, and the "wilding hour" at night where my body revolts and I seek out the cold tub. 

I quit counting the number of doctor visits after around twenty five. Two hospitals, a pulmonologist, auto-immune doctor, infectious disease doctor; allergist, and fortune teller have all looked under the hood. Everyone is baffled and I'm at the point where one of them questioned my fever record..."have you had your temperature checked at any of your doctor visits?" No, hadn't thought of that. #sarcasm

I'm going for the Ferris Bueller record for heating up the thermometer for seventy one days. More sarcasm. I got tired of counting how many days I've had a fever so I post Bronco football player photos with their jersey numbers keeping count (for those that were confused by my Tom Nalen post, that explains it.)

My wife and kids continue to provide amazing support. My wife has become the "queen" of COVID long hauler' research. The more we've learned, the more we realize there's much we still don't know. Not faulting my medical care, unless you test with a swab, or need to go on a ventilator, they don't know what else to do. What I mean by that is that absent a positive swab or antibody test, they'll largely tried to diagnose it as something other than COVID-19. My heart and lungs are fine. Recent research shows (I'm NOT a doctor) that it actually attacks the vascular system which would explain why I still have difficulty breathing.

Eliminating "everything" and thinking the vascular system could be in danger (embolism, clogged arteries, and other "bad things",) I sought out a $100 ultrasound scan of my vascular system. I was "rebuffed" by the clinic when I shared the fever symptoms. It's a vicious "Catch-22" as I can't get the test without the fever. I argued that I've tested negative for COVID, and the Dr. retorted that in his opinion the symptoms I'd described (oh, forgot about this one--my varicose veins have grown in the last six weeks wrapping around my lower leg) wouldn't explain the fevers. No shit Sherlock. It's another symptom. I'm trying to avoid dying here. 

I am working on getting that test done.

Back to the long hauler stuff. After my last Dr. questioned my fever like the Mayor Larry of Amity questioned Matt Hooper if he still had the shark tooth the size of a shot glass taken from Ben Gardner's boat, my wife and I are looking outside the State of Colorado for help. I don't see my primary specialist until the end of the month at National Jewish. I have a call into Mount Sinai as they have a recovery program in New York City. There's a similar one in San Francisco. In other words, I'm not sitting on my hands to find answers. Aside from all the medical journal articles my wife has shared, I have joined Survivor Corps on Facebook.

Within the group of 87,000 members, I am not alone with this long-haul nightmare. Many of their stories parallel my journey including the fact that I couldn't get tested in February and March.

(Alex) I am on day 47 of sats in the mid 85-90 when lying down. I have not had a fever nothing over 99.5. I have weeks of chills, profound fatigue and leg weakness. My husband was admitted with presumptive covid with cytokine storm weeks before my symptoms and both my kids have had low grade temps for 2 months. None of us have tested positive. I’ve had 4 nasal swabs and a blood test. I’ve also been on. Home oxygen for over a month. 

(Kim) I’m an RN and thankful to have been able to battle this at home with a few ER “visits”, but the long term effects scare me! I’ve been sick since June 23 and still have heart palpitations and shortness of breath with exertion and a tight chest. It’s almost like I just can’t quite get that deep breath in. 

There are countless stories of loss, bereavement, long-haulers that were never tested positive,and doubting doctors. That's about all I have as my palms are sweaty and my office is hot from my body radiating heat a mere few feet away from the Peloton.  My wife and kids got me the "sweet ride" for Father's Day, but alas haven't logged a mile on it. Right now; running, swimming and biking is really the furthest thing from my mind. I'd take living and walking without running out of breath right now. 

Oh forgot, one last point. Listen to credible sources like the CDC, NIH, John Hopkins and the like. Do not indulge in political tomfoolery that suggests injecting yourself with disinfectant (yeah, he suggested that,) or Hydroxycloriquine from a group of "quack" doctors that started a "front line" group of doctors that aren't even on the front line and their website didn't exist a month ago. Oh yeah, don't have fucking picnics without caution or masks. Be smart, be safe. Wish me luck. 

Other articles on long haulers;

https://apple.news/A4rhVEJyDQ8iyh2woD2TXaQ

https://apple.news/Ar4p91IHVTouQl33tU4J6rA

https://www.ft.com/content/5cf2ee49-df7a-4990-b337-860cf7737b2f

#peaceout #wearamask
#peace #love #namaste