Long Covid: How it Started, How It's Going

As Fall has been setting into Colorado, the leaves are changing colors and it was once again time to harvest the garden tomatoes before the freeze. As I've tried to remain productive in life, I offered to run to the grocery store down the hill to turn the harvest into chili, BLT's, and my world class lasagna. My wife went so far as to type out a grocery list. Easy enough, right? What should have been a quick in-an-out thirty minute job turned into a small nightmare. 

I spent almost 90 minutes at King Soopers and could sense that my brain was grappling with the simple task. I'd hate to see my Garmin (which hasn't been used in 17 months) routing up and down the aisles looking for the culinary items like a drunk sailor or an old man lost in the grocery store. I've become that "old man." Halfway through the ordeal, my breath became labored--more labored than normal. I pushed through as my pride wants some level of normalcy in life and contribution to our household. This is a day in the life of my Long Covid life.

A recent study from the Journal of American Medicine on Long Covid profiled on CNBC (reported by Emily DeCiccio,)  states, “Our work and the work of others has shown that this affects people’s abilities to make plans, synthesize information, and do their daily activities of work,” said David Putrino, the Director of Rehabilitation Innovation at Mount Sinai Hospital in New York. “They suffer from a lot of memory loss and inability to form new memories, as well as difficulty with speaking. This is a very debilitating condition with serious cognitive conditions.” 


Original Photo credit: Dayne Pillow Photography

It's been more than a hot second since I've provided an update as I've been dealing with a lot on top of my health. My dad has Dementia and my mom suffered a massive stroke in September. Dad is now at home and my mom is still in rehab. When it rains it pours.

Anyhow, I have many friends (and family) that have been asking "what's new" or "are you any better?" I'd use the running in place analogy of a treadmill, but it pains me to think of how long it's been since I've sweat on a treadmill.

Walking is tougher for me than sitting on the Peloton at home. My new physical therapist explained that this is common for people with Long Covid that's evolved into POTS. More like my health has gone to pot.

With that, a few fast update(s)

1) I've had 115 doctor appointments and counting.

2) It's been 656 days since I started feeling sick.

3) My treatment has been largely limited to trying to calm the neuro madness I'm going through; burning feet, leg and feet craziness, "cooking organ" sensation in the chest, and fairly new chest spasms. My chest is raging as we speak. Nothing I've tried has provided relief.

4) I'm un-employed.

5) I did achieve short-term, then long-term disability (through insurance NOT Social Security) through my previous employer. Most people I've encountered online (through groups like Survivor Corps) have largely been denied disability benefits. This is roughly a 50-66% pay cut for me. While labeling "long term" disability, it seems tenuous at best as I'm constantly having to update and provide inputs. It's stressful to say the least.

6) For the first time in my life, I've had to buy COBRA continued healthcare coverage which is $2,000 a month. Combine that with the above pay cut, and you can imagine the financial turmoil this has created along with the accompanied stress and depression. Short of jumping into politics today, "yes Virginia," our US medical system is broken.

7) Due to the above, we are currently packing our house to move out and rent out our home. We are looking at moving into the basement or spare bedroom of a family member to try and triage our dire financial situation.

The estimated cumulative financial costs of the COVID-19 pandemic related to the lost output and health reduction...is estimated at more than $16 trillion, or approximately 90% of the annual gross domestic product of the US. For a family of 4, the estimated loss would be nearly $200 000. Approximately half of this amount is the lost income from the COVID-19–induced recession; the remainder is the economic effects of shorter and less healthy life. (per JAMA.) 

8) Evenings rarely include anything social anymore as I'm often in bed by 7PM. I did win Denver Nuggets tickets on Alice 105.9 with my answer to, "what's the most bizarre life saving advice you've got?" (*Answer below.) While it was nice to hang with my son, it was beyond my energy to manage an event that started after 7PM. I came home before the game ended completely exhausted which had a ripple effect the next day which is common with long-haulers. Overdoing it (while menial) will "make you pay" the following day.

Driving Home from California stopping at deserted water park.













9) In September of 2020, I mentioned to my doc at National Jewish Health that I was considering a mental break up in the mountains. He highly recommended sea level instead. While that worked to a degree (perhaps more mental relief than symptom relief,) I couldn't (re)capture that same benefit last month. While we didn't do much, simply visiting with friends and family (talking) wears me out. This last weekend, my wife and I (again needing a break from the above) found a good "mud season" rate in Avon, Colorado. Enter "nightmare part two" as the altitude literally had me "gulping for air" through a good majority of the weekend. Friday night felt like I was having a heart attack with more severe chest spasms along with chest pain and tightness. Regardless, it was a nice getaway.

10) Best way to recap my situation is from the experts admitting they largely don't know what Long Covid is (other than a generalization that it's a post viral multisystem illness) much less how to treat it.

11) Brain fog is "thick" as is depression. I met with a new physical therapist last week who had to give me her name three times. I forgot her name as soon as she shared it. Not something I'm used to as a sales guy who was paid to build relationships and remembering names. My wife gets frustrated (understandably) as questions are often met with long delays or no answer.

As I've monitored a number of grassroot sites like Survivor Corps and Long Covid on Instagram, there is no clear answer (although theories on histamine and mitochondrial are interesting) and many have their symptoms dismissed by their local physicians. I'm not immune to ridiculous or skeptical advise. A cardiac specialist told me the story of a man with a urination issue who was in the midst of a consult. The man said he had to go to the restroom and he/the Dr. said, "just a minute, let me ask a few more questions." Twenty minutes passed and the Dr. said, "I thought you had to go to the bathroom?" 

His point was that the frequent urination was "all in his head." As he looked at my extensive heart and lung tests, he pretty much said, there's nothing wrong (pre-2020) with my heart, so basically, "get your ass out there." Um...go F*ck yourself. You think I don't want to get out there, race with Liam, and get back to something I love?  Dismissal of symptoms of Long Covid patients is rampant.

Runner-up to worst medical advise or interaction was explaining my chest spasms to a doc and he said, "you mean like a hiccup?" Yeah, kinda like you're a dentist, not a doctor. Um, I know the difference between a fart and a hiccup and chest spasms. Breathing into a brown paper bag aint gonna fix what I got.

I started the post thinking, Clint Eastwood's "The Good, The Bad, and the Ugly," but A) that made me sound like an old guy, and B) there really isn't anything good to report right now. I suppose the only "good" is that I haven't given up yet as I continue to seek answers and relief. Despite being a candidate for depression medication, I'm working on more holistic approaches. I've got 175 straight days of meditation using my Muse device. I continue to try acupuncture and massage to try and calm the body which seems to only provide temporary (mental) relief.

I continue to engage with Mayo Clinic along with National Jewish Health locally in Denver on my treatment and seeking answers although (no disrespect to either of these world class organizations,) we're playing whack-a-mole with symptoms and treatments with no impact as of yet on my condition. I also reached out to my Senator, John Hickenlooper's staff and discussed my personal situation and the plight of the Covid Long-Hauler. 

Yes, I blame the last administration for largely ignoring and mocking the pandemic. In all fairness, the current administration can do a lot more to tend to this massive (economic and personal) issue. A "band-aid" to the situation was reimbursement of COBRA payments which ended in September via the American Rescue Plan. Band-aid is probably the right word as that does little to help our overall situation and many others like me.

To the point of not giving up; November 10th is appointment number 116.

* Answer to the my most bizarre life saving advice? My stepdad calmly shared with me as a kid that if a pitbull (or other aggressive dog) attacks and you can't wrestle free, you simply (ahem) slip a finger in their butt. They will let go, and no, I haven't had to use this advice.






Comments

  1. I don't know you personally but heard your story via Tom Costello and have thought of you about a million times since. I am not a doctor or scientist so I can only send many many wishes for something good, some relief, some joy.

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