Road to Healing

UPDATE: My Mayo Clinic Long Covid Story Aired March 23rd on the Today Show. See HERE.

On this windy Sunday morning, I walked into Fiddlehead Coffee shop in Rochester, Minnesota. It's .6 miles away from my new AirBNB near the Mayo Clinic campus. Talking Heads, "Road to Nowhere" is playing overhead. This puts "icing" on top of what I'd already deemed to be my favorite coffee shop in town and also perhaps a metaphor of my journey thus far. As I order, I make small talk which I usually do when ordering coffee. The barista introduces herself. I reciprocate, and she says, "Todd?" No, Ty but I have a brother named Todd and I answer to both. 

Not a minute later, as I'm watching the barista prepare my latte, I tell her, "I'm sorry, I got your name, I'm not sure if I gave you mine." She politely told me, you did, you're Ty and you have a brother named Todd. She gave her name twice. I think it's Jolene, but that's not it. I don't want to ask her again. This is what you call "brain fog" which is one of "the knobs" the Covid monster fiddles with every day in my current world known as a long Covid sufferer, or previously labeled as a Covid long hauler. Dr. Fauci has put a further label on it known as PASC (or Post-Acute Sequelae of Covid-19.) 

Most knobs are almost always on, but others are turned up higher than others on a given day and normally turned up as the day goes on.

Today is day twelve in Rochester on my quest to find answers and hopefully treatment for my long haul condition. To say my experience thus far has been amazing is an understatement, but equally exhausting. I'll quickly point out that this is not a 48 hour or one week miracle. Being a marathon runner hopefully gives me the fortitude to push beyond "the wall" that normally (or should I say always in my case) hits around the twenty mile mark of a race.

Waiting to see one of my doctors at Mayo Clinic










When I started to book my trip, the scheduler asked what specialty (or field of medical study) I'd like to see. The "trigger" to seek out Mayo Clinic was the culmination of nearly seventy doctor appointments and most recently under the care of National Jewish Health in my hometown, Denver, Colorado. In January, I had a heart cath procedure with exertion (yes, they put me on a bike after snaking a tube into my neck and wrist.) 

The right side of my heart should have seen an increase in blood flow. That did not happen. This all lead to an additional diagnosis of preload insufficiency of the heart and potential diagnosis of POTS dysautonomia. This is why I talk about how Covid is a tornado that rips through town and leaves a swath of destruction behind. Given the rarity, my primary National Jewish Doctor recommended a trip to Mayo.

Denver Blizzard snow shows up in Rochester

After $150,000 in medical expense in 2020* my "patron saint "of a wife and I agreed to head to Minnesota for Spring Break. Not everyone's first choice as there's no beach or umbrella drinks. Not an easy financial decision as I filed for disability in January. I say that as perhaps the best health care in the world isn't exactly free. As I was booking the trip and first appointment, the scheduler suggested "at least a week" which baffled me as up until a few days before my arrival, I only had one appointment and that was with Dr. Sandroni in Neurology (back to the point of  "what specialty to start with.") I was puzzled why I booked ten days for one appointment, but on day one I quickly discovered one thing that sets Mayo apart from others.

When William and Charles founded the Mayo Clinic, (see Ken Burns documentary on Mayo) one of the basic tenets of their approach was to not only bring the best medical care to people, but given that it's a world destination hospital, meeting one doctor who would likely want to refer to another field in the hospital; it's not practical to fly someone home and say, "come back next month or in two weeks." Their approach is to rapidly engage the right medical care while you're there. 

That value was quickly demonstrated as Sandroni had me lined up with tests and meeting with another doctor literally that afternoon. What followed last week was a frenzy of tests and appointments that was exhausting--ironic that fatigue is something that's plagued me, but alas I have rallied through it. Two tests in particular really taxed my body. The first was a sweat test. Invented by retired Dr. Fealy in their neurology department. (BTW...what a great name for a neuro doc.)

The sweat test (to look at small nerve function) was conducted a week ago Friday. They covered me with a salt dust that looked like cinnamon sugar. With nothing but a tea towel covering my nether region, they wheeled me into a boxed room of roughly 6' x 10' x 8' and turned on heaters while Canon cameras slowly filmed how my sweat formed. The dust slowly started to turn purple as sweat formed. I'm not claustrophobic so that didn't bother me, but they slowly cooked me (with sensors attached) to 100 degrees. Given my body temperature irregularity and my 105 day fever, this slowly became torture as I thought of Sir Alec Guiness in "Bridge on the River Kwai" where Colonel Nicholson was punished by being put into the oven. 

Post sweat test

The second test was a VO2Max test which was a bit of a repeat of the (by different name) Cardio Pulmonary Stress Test (or CPET) conducted by National Jewish Hospital. Shave parts of the upper body, attach EKG leads and hook up a mask to simultaneously measure breathing on a treadmill. Part of me was excited to have doctors permission to run on a treadmill, but they turned up the incline, not the speed--as a runner, I hate uphill running. I only lasted ten minutes as my breathing and heart simply couldn't handle it. 

I won't list all the blood work and tests, but those two in particular really stressed my body and exacerbated my symptoms. My sleep in particular has been an absolute nightmare the last eight days with the night before my interview (coming ahead here in the post) kept me up until 4:30 in the morning with burning feet and crazy legs that required one to three cold tubs a night. Headaches and higher end flu symptoms have escalated likely due to the rigors of the tests and the week. As an aside, we moved from the Fairfield Inn (very nice hotel but required a car and parking) to the Mayo Marriott last weekend. Marriott was gracious to move us to a two room suite which helped but it didn't have two beds, but a living area in the second room

I mention the rooms as my routine back home often consists of an ice tub sometime between 11:30 to 12:30 when the crazy legs go crazy. I then crawl into the guest room which has cooler temperatures in the basement but also gives me and my wife a chance at sleep. Some nights (like this week,) I'll hit the cold tub 2-3 times a night. The couch in a downtown lit room (despite the shades drawn shut) cold temps, and short couch didn't quite work even though my wife and I both tried.

Sleep became a focus with the doctors as you can imagine. Two to five hours of sleep in a night is not a recipe for healing.

One of the best appointments (that's not accurate nor fair to all the other docs) of the week was with Dr Greg Vanichkachorn who's considered one of the world's leading experts on long-haulers. Like the culture I described, this was "spawned" out of an appointment with Dr. Ray Squires who reviewed my VO2Max results with me. Coincidentally, he said it showed my heart was consistent with someone of my age but not necessarily of a runner of my age. Dr. Ray suggested I meet with Dr. Van and a Dr. in cardiology to look at the preload issue. The "Mayo Machine" got me into Dr. Van the next day who's a rockstar like many here at the Mayo Clinic.

Interaction of the areas of the brain with long Covid.

I mentioned interview. In August, I was part of a Tom Costello story on NBC Nightly News covering an Eli Lilly antibody treatment. Tom is a childhood friend and has first and foremost been a dear friend with concern throughout this terrible journey. He asked and I obliged to have him conduct a follow-up story on my latest chapter at the Mayo Clinic. Mayo's PR team got involved and showed up to my Dr. Van appointment with a video crew for a brief shoot before I was able to talk with him privately.

Not to suggest other doctors or hospitals are any different, but Dr. Van (like the other docs) was a extremely thorough notetaker as he walked through the litany of my symptoms. Like many people that suffer from long haul (see Survivor Corps,) at times I've been met with doubt and skepticism regarding my condition. For the first time, I felt validation. There were symptoms like the burning of my feet, and pin pricks in my hands that Dr. Van has seen in other patients. 

The common long hauler symptoms that the Covid monster "plays with" every day in my world include a baseline flu-like malaise that would have most people call in sick to work that day. Layer on shortness of breath, chest pain or tightness, chest burning (as I've described as it feels like organs cooking inside my chest,) leg neuro issues, temperature irregularity, fevers, brain fog, and fatigue. I did win the "blue ribbon" for consecutive days of fever as (with many doctors) that was on the freakish end of what he's seen. 













It didn't hurt that from the start, we "hit it off" as Dr. Van is a runner and an Ironman triathlete. The day before Dick Hoyt's passing, I got a picture of his Dick Hoyt photo in his office. I could tell I was dealing with an expert, but that was dwarfed by his compassion. He told me and my wife we were not alone, and we were in the right place. We agreed. After our session with Dr. Van, my wife and I hugged, held hands and cried in the Skylight Commons cafe in the clinic after our appointment.

I wasn't told I had a misdiagnosis. I wasn't told it was all in my head or anxiety driven. I was also told as I was with Dr. Ganesh the next day that "type A" individuals have further issues (I'm careful with my words as to not say athletes are "hit harder," but they DO tend to push through illness.) I'm a walking example as I was still intermittently training January to March of 2020 for a planned half marathon with Liam. 

A clear sign I'm in the right place in Dr. Van's office

It also fuels a vicious cycle the body plays with the brain. This made further sense as I'd read a story on NPR earlier in the week about a twin sister of only thirty years old that got sick just as I did early last year. Audrey Ellis (also a runner) of Denver brushed it off as a cold or flu and pushed through as she was working on her graduate program. Like me, there were no swabs; thus no diagnosis. Audrey traveled to celebrate her birthday with her sister Kelsey. She felt worse, went to the hospital and died at thirty years old.

I'm not saying I'm dying but most days I feel that (pre-2020) I should be going to the ER with chest pain, chest burning, and heart palpitations. Like many, aside from the January 6th heart cath, I've "stumped doctors" as my heart and lungs have passed all the tests.

After Dr. Van, I met with Dr. Ganesh the following day whose specialty is Fibromyalgia and Chronic Fatigue Syndrome. I don't want to speak for Mayo, Dr. Ganesh, or present myself as an expert but another set of epiphanies erupted as Dr. Ganesh explained the relationship of stress, the brain, the rest of the body, and fatigue. Think of a teeter totter in the areas of the brain; when one area is overrun, that causes an imbalance in another area; which starts to explain the "brain fog." Long hours on the computer feed the beast. Talking at length as I've discovered drive this vicious cycle. Eureka! That hour with Dr. Ganesh explained a lot for me. 

Just as I explained earlier, this has spawned more evaluation and education classes that will include retraining the brain and the vicious "fight or flight" cycle and "sleep hygiene." We all have bad sleep hygiene habits; mainly staring at all the electronic screens in our life. Clicking on a Rand Paul story about desecrating the national treasure that is the patron saint Dr. Fauci will only raise my stress which fires the wrong neurons in my brain and add to the fuel of bad sleep.

Along with Doctors Van, Ganesh, and Sandroni, I have a "quarterback" if you will in an internal medicine Doctor, Dr. Christians. A few of them will be talking about PASC and my journey on the Today Show next week (as of the writing, on Tuesday the 23rd. I will post updates on my twitter and Insta when I know more about that.) Everyone has been amazing.

Sorry for the long post, but this is easier than making a dozen phone calls as talking wears me out and raises my symptoms. To use a baseball term, I'm on a bit of a pitch count when it comes to talking. Like a pitcher's arm, after "x" number of pitches, or words, I stop answering the phone as the devil starts turning up those knobs and need to get horizontal--quite often crawling in bed for the night at 6:30 PM. 

Another sign I'm in the right place. Triathletes.
















I mentioned the patron saint of Dr. Fauci, but the understated patron saint in all this is my wife. With over $150,000 in medical bills last year* (thank god for good insurance at the moment,) going on disability and the financial stress that creates with the fact that she has auto-immune issues of her own is unbearable stress for her. She's been absolutely amazing and my "rock" throughout the journey. As I moved from the Marriott to an AirBNB, I insisted she fly home yesterday as planned. She needs rest and as we say, "somebody's gotta pay the bills." 

With a couple of meds for sleep and "crazy legs" (Gabapentin) or perhaps sheer exhaustion, I woke up once at 11:30 last night then slept the best I have in months as did my wife back home in Denver. Good sleep alone won't cure me but it's certainly fundamental to my recovery. I also understand that (without being a defeatist) there will be more bad nights (and days.) One brick at a time to use a triathlon training term.

Andy Warhol Print at Mayo
As I begin to wrap, and I've been only able to give you part of the experience, one of the Mayo questionnaires, I was asked about my stress, anxiety, mental health and thoughts of suicide. I told Tom Costello about a conversation I had with my daughter. She called me one day and near the end of the day, I'm spent and normally don't answer phone calls. She's on a short list of (almost) always answer. She made the comment that "you don't sound like you want to talk." Like I have often done, I try and mask my true situation and I finally confessed that "I'm not sure you understand how I feel or what my body is going through." She then understood.

My wife and daughter are two of my most cherished relationships as are my two boys. I don't mention this to make my daughter feel bad, but I finally explained what I was truly going through and a "lightbulb went off" with her. She's talked about wanting the "old Ty" back. I want the "old Ty back," but this has tapped my personality and soul. She's since (not that she wasn't already) been amazing and calls with stories and tries to make me laugh with the life of a 26 (this week) year old. Like I logged miles for Liam, she's now become hooked on running and runs for her Dad. This gives me great joy.

My boys are been equally amazing either picking up around the house, or asking people to mask while telling my story on Instagram.

As one of the doctors read my questionnaire, that lead to conversations around suicide. I won't mention his name (but he will know when he reads this.) A friend had been in a dark place at one time in his life and said that those thoughts were dismissed when thinking about the cruelty of what that does to the people you love the most that you'd leave behind. With doubts of ever having any sense of normalcy again, the thought has entered my mind but is immediately dismissed (in part due to that conversation years ago.) It does not mean that I don't think about my mortality and at times thinking I've had a good life and accomplished much. 

The same friend as some others have been concerned about the sometimes dark tone of my (especially) late night posts. I have to say after this week, I have hope. Please accept this paragraph as honesty and not a vigil for a suicide watch. I am not in that place but others are failing under the pressure (see: Texas Roadhouse tragic suicide story.) PLEASE, PLEASE...everyone is loved. Seek help if you have these thoughts. (HERE.) 

Chihuly in one of the Mayo Clinic Atriums

Not to overuse the word, but to say this week has been emotional is also an understatement. As I arrived last week, I learned good friends Bruce, Laurie, and Tim started a GoFundMe. Honestly I was ashamed, and embarrassed as I'd seen people in wheelchairs earlier in the day coming in for answers. Through last weekend, I was able come to terms with the fact that while I have health insurance right now, I'm on disability. I've worked hard my whole life and found success, but should I lose my job entirely or disability benefits, this could financially destroy me.

Artwork is displayed throughout the hospital through generous donations along with areas named after the likes of the Sheik of UAE and the auditorium named after David Geffen. As a former art major, I've enjoyed seeing Warhol, Chihuly, and Auguste Rodin between appointments along with the magnificent architecture. 

I don't have the Sheik's money. I have a mortgage, I still have a son in college and I no longer have commission checks or a salary. That's scary not just for me, but more so for my wife. I am not going to extend my hand out or sit on city corner with a tin cup but I have sincere gratitude for the gesture and all the outreach I've got. Thank you so much.

If you've been following the journey, you know I haven't been shy about sharing the story. As it's now been on NBC Nightly News, CPR, NPR and soon to be on the Today Show, you might wonder what my motivation is. My run blog has turned into Covid blog. Especially as I hope to return to the high-octane (and quite often stressful) world of software sales, "brain fog" is not something to put on a resume (though they think this can disappear with treatment.) My motivations are twofold; one is therapy--talking about it or in my case, writing about it is therapeutic. Secondly, I believe there's a higher cause to raise visibility of people suffering from long Covid. 

To end this long post on a David Byrne reference, I no longer feel I'm on a "Road to Nowhere." I won't leave here next week cured but I'm finally on the right path to healing. 

Footnote: Before I get a dozen more suggestions, yes, I plan to get a vaccine when I get back to Denver and saw the articles this week on some long haulers emerging from their nightmare after getting it.  

* Fortunately, at the moment I have great health insurance with Blue Cross and it's covered a good majority of my health care. 






Comments

  1. I'm glad you're feeling hope. Isn't doctors validating your experience amazing?!

    ReplyDelete
    Replies
    1. Indeed. Now to move on to treatment and healing hopefully

      Delete
  2. Ty, I am so moved by your words. I'm hoping your visit to the Mayo Clinic results in something truly revelatory for you. I'm just up the road from you, in Minneapolis -- wishing you hope and relief. (Kathy Davis Graves)

    ReplyDelete
  3. I have been following your story and just wanted to let you know I think of you often, and hoping and praying for some relief , some joy, and an end to this long ordeal through which you are suffering.

    ReplyDelete

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