In April, I returned to the Mayo Clinic for a checkup and to see if my esophageal ulcer had healed — an ulcer I had painfully lived with for 12 months. Their endoscopy revealed the ulcer was gone (a huge relief), but also lots of scar tissue remained within the esophageal wall and the appendage had begun curving again.
The report was fairly good news except for the scar tissue issue and I was encouraged that the damage inside my esophagus was not progressing too quickly.
I sat down with my Mayo doctor and told him about my moonshot and how it had all started eight months earlier with our conversation about the prospect of a feeding tube in my future. I also told him I was now working with Dr. Jay Pasricha and I was due in Baltimore in two weeks to meet with him and get a different type of endoscopy performed.
My Mayo doctor did a double take when I mentioned Dr. Pasricha’s name — totally unrelated to my situation, he had met Dr. Pasricha a few weeks earlier at this very same Mayo Clinic. He praised Dr. Pasricha’s reputation in Achalasia research and was very interested in where this moonshot was going.
*An interesting side note: My Mayo doctor also made it clear that he believes The Mayo Clinic is the best hospital in the world when it comes to treating and healing sick patients. But if I was expecting them to be the leaders in exploring new innovative and cutting edge experiments and clinical trials, I was in the wrong hospital system. I appreciated his candor and to those reading this series, consider this before relying on The Mayo Clinic to find new patient experiments for cures. That’s simply not their mission.
Two weeks later, we loaded up the family and traveled to Johns Hopkins hospital for my 14th esophageal endoscopy since 2012 — but this one felt different for me, even if I suspected the results would be like all the others; I was now the patient of Dr. Jay Pasricha and we were exploring ways to find a cure.
Unsurprisingly, the results of the endoscopy confirmed what I already knew; I had a flaccid esophagus with no working nerves and muscle. My three previous surgeries had cut the muscle to shreds and scar tissue was prevalent throughout the lining of the esophageal wall.
Even though this confirmed every other endoscopy I had taken for five years, Dr. Pasricha was willing to assemble a team around me and consider, at some future point, pursuing a clinical trial using stem cells as a means to cure my Achalasia.
When I asked how many people he wanted in the trial, he said, “It will be a one man trial since it’s the first one ever.”
My first instinct is that this is really cool. My second thought was, slow down cowboy, how many first time experiments work?
Eventually, I concluded that moving down this road would ensure options and I didn’t need to make any final decisions for a while — so why not keep taking baby steps? Dr. Pasricha did ask if I would be willing to come back to Johns Hopkins in a few weeks and do a different type of endoscopy — my third one for the year and 15th overall. I reluctantly agreed.
In the meantime, he had assembled a team to conduct regular conference calls with me to discuss options. The final June endoscopy would reveal the plan forward for stem cell treatment.
My June visit to Hopkins ended like the previous 14 endoscopic procedures and I don’t think I need to revisit those results again. A few weeks later, Pasricha and his team reached out with an idea.
He was willing to try a one-man clinical trial where they would biopsy calf muscle stem cells from my leg, culture them in a lab (the Cook Myosite in Pittsburgh, PA) to produce hundreds of thousands of stem cells. After that, they would inject them into my esophagus to reconnect the muscle tissue, stimulate nerve function, and regain muscle contraction. To more easily translate this, the hope is that this will make my esophagus work again.
Since this has never been done before, Pasricha was clear that there are no odds of this possibly working, or not working. We’d be flying blind.
The next step for me was to get family approval to move forward. Pasricha was tasked with getting the Johns Hopkins Independent Review Board (IRB) to approve the clinical trial and to get The Cook Myosite team to approve taking my calf biopsy and culture.
Soon thereafter, I agreed to proceed and The Cook Myosite team agreed as well. All that was left was the IRB’s approval.