“I never said it would be easy.” — Mae West
The past few months have been nuts for all of us. Our health, kid’s school situation, work, and overall well-being was massively disrupted by the coronavirus.
There are silver linings in it all, however.
For me, it’s that before the lockdown went into effect, I underwent the first-ever, one-man, clinical trial to treat and possibly cure the disease I live with, called Achalasia.
The basic explanation is that my esophageal muscles and nerves are dead and most doctors believe it will never work again. From the food I eat to the way I eat it, everything lodges on the way down. I have to think hard before I take each bite of food. Eating is a big chore.
Physically and mentally, it is a process I live with every single day. There are also many unknown 2nd and 3rd order consequences for me down the road.
After 17 minor procedures and four major surgeries, it’s best to describe my appendage as looking like an upside-down cheerleader’s pom-pom. The doctors have shredded it so food can empty into my stomach properly.
Then, on February 17th, 2020, doctors at Johns Hopkins University laid me down on a gurney, administered a large dose of propofol, and injected 225 million stem cells into my eroded esophageal muscle wall. Had this procedure been scheduled for March 17, instead of February 17, it never would have happened, due to the original coronavirus lockdowns.
Our hope was that the injection would rebuild the muscle wall and create functionality. This is an unprecedented case, however — never before attempted on another human being (or even an animal) — so our “hope” was the only thing we were all going on.
Still, that was enough for me to try it (while I kept up a tough and positive exterior regarding the experimental procedure, the truth is, I was pretty nervous).
My original plan was to return to Johns Hopkins in May, for a battery of tests to see if the clinical trial was a success. I suspected that I’d know either way before the test results were revealed.
But then COVID-19 blew up everything and my original follow up appointments were postponed…until a few weeks ago. That’s when I jumped on my first flight since March, returned to the hospital, and underwent a battery of tests and propofol-induced scopes.
Here is what happened….the procedure didn’t work.
I knew deep down that this groundbreaking operation probably wasn’t successful, just because I hadn’t felt any improvement in my ability to swallow. I definitely held out hope that I was simply wrong and maybe something was working (that I just couldn’t detect yet).
And if I’m to be honest, my first thought upon hearing the results from the doctor was that I had failed, and let a lot of people down — including those living with Achalasia (who had been praying for my success). I then grieved and felt sorry for myself for a few days.
I know that sounds ridiculous but it’s how I felt. Eventually, I saw the truth for what it is — the only failure is in not trying.
So what’s next?
The good news is that my doctors are willing to try the stem-cell injection procedure one more time. I’ve decided I can’t quit, I have to try again. I am electing to go for it.
What will that look like?
The first procedure targeted my eroded and very thin esophageal muscle wall. This second operation will target the stronger, but shredded part of the muscle wall with the hope that the stem cells make a muscle connection and create functionality.
But that’s not all…
While the first procedure utilized 225 million of my skeletal stem cells, the doctors are planning on more than doubling the amount for the next attempt — to around 500 million.
So, my medical team’s plan will target a different region in my esophagus and double the stem-cell injections.
When will this next attempt happen?
While the coronavirus makes it harder to plan, we are looking at early 2021 to undergo injection #2.
I’ve said this before and I’ll say it again…regardless of the outcome, I’m beyond blessed. Oh, I have bad days — especially when you add in this coronavirus moment.
But ultimately, I have the love of my family, I’m passionate about where my life is going and I accept what the universe gives me — good or bad. I’m alive, I’m not dying — I’m just living with a daily challenge.
In the end, we only have one life, nothing is guaranteed (if anything, the coronavirus has taught all of us that) and if I do my best to live with gratitude and positivity, I will absolutely manifest a better life.
That’s the choice I’ve made.
To all my Achalasia warriors out there, don’t give up. Whether I succeed in my clinical trial or not, we are moving in the right direction.
There is hope. We’ll find a cure one day; I have no doubt.
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