That’s a Tough One to Swallow

Three years ago, on the heels of my 50-something birthday, I was in a local hospital for the better part of the day, walking the halls, locating different examination areas I was scheduled to visit to hopefully aid my gastroenterologist in ultimately diagnosing the choking issues I had experienced for years.

I’m not the kind of person who runs to the doctor at the first sign of trouble. That’s just not me. My former General Practitoner knew by the time I scheduled an appointment with him, I had been having issues for a minimum of six months, often times longer.

My gastro specialist came highly recommended by family and friends. Dr. M. couldn’t make a diagnosis without the proper testing, so ready or not, here we go. I had an upper endoscopy, a barium swallow test, and the god-awful manometry test. When they hand you a barf bag, that’s your first clue this isn’t going to be pretty.

What ultimately brought me to the doctor after all this time? Fear of dying. I was finding myself regularly choking on a granola bar, rice, fries, just to cite a few, but bread was the absolute worst. The disorder intensified where I even began choking on water. What scared me was when I would choke so severely, my daughters would hold the phone in their hands, with bated breath, ready to dial 911. That happened at least three times. That broke my heart to see them so scared.

The symptoms escalated when I began choking in my sleep. I can’t even describe it, but it was scary as hell. I would spring straight out of bed and attempt to take breaths, which resulted in a deafening, inhaling sound but without a whisper of an exhale. It felt like I couldn’t breathe! I would look at myself in the bathroom mirror, hands clenched on the counter, horrible thoughts racing, and, well, it was sad. I can’t revisit that scenario without getting upset. You could hear me trying to breathe all throughout the house. I would strike the walls or doors as my plea for help when I was really frightened. I didn’t want to die alone. Ugh, that was awful.

My husband was there for one such episode, and he told me I was, in fact, breathing. He saw me struggling, but he assured me I WAS BREATHING, but you could have fooled me. We may never know exactly what “that” was, but if that never happens again, it’ll be too soon.

It was about that time, I decided to finally seek professional help. After the testing, my physician told me I had Achalasia, a rare disorder. It’s found in 1 in 100,000 people and is associated with an auto-immune disease. My issues consist of the muscles in my esophagus not contracting (due to a nervous system breakdown) and therefore cannot move the food down “the pike”. In addition to that, the flap at the bottom of my esophagus (sphincter, also called LES) primarily stays closed, consequently causing everything I eat and drink to back up in the esophagus which results in an uncomfortable fullness in my throat. Add to that the choking I mentioned earlier. Talk about the trifecta. Are you getting the picture? When the food does begin to travel, it feels like chest pains in a vertical line precisely where the esophagus is located. It would get my attention mid-sentence every time.

My doctor’s first course of action was to start with Botox. I thought great, I finally get some Botox but it’s on the inside where no one will see it. Bummer. It merely lessened the severity of the symptoms for six months. During that process, he also dilated or stretched my esophagus. Imagine my disappointment when it was short-lived. He advised me not to have any more procedures done in the event I opted to have surgery at a later date. The procedures could result in scar tissue and not be advantageous for me during the operation.

There is no cure for Achalasia thus far. Doctors only offer procedures to hopefully diminish the severity of the rare disorder.

After those six months, all the symptoms came back and then began to worsen. I had come to a place where it seemed if I drank anything cold, it would worsen the symptoms. My daughter suggested drinking room temperature water because she surmised cold water, in all likelihood, constricts the esophagus. It made sense to me. So from that time forward, I have become a three-bottle, room-temperature, water-bottle toting Mama. I bring my water everywhere. Most meals require at least three full 16-ounce bottles to feel like the entirety of my meal isn’t sitting in my throat. I drink coffee in the morning and water the remainder of the time.

Desperate for answers and with the assistance of my doctor, we were not able to find any physicians in the 300-mile radius that could address my growing list of complaints as the issues multiplied. I told my doctor to find me someone in the continental United States, and, without hesitation he referred me to the Cleveland Clinic. The clinic has doctors that specialize in Achalasia and they perform surgeries every single week of the year. They are the premier hospital to visit in the US or so I’ve been told.

While I spent several days in Cleveland in the Fall, getting up-to-date test results, one particular finding startled me and yet confirmed so many things. I had fasted an entire day due to tests. After testing, I ate a few bites of salad and then a little ice cream at about 4 p.m. That’s all I had that particular day. The following day, I was to fast again and report for an Upper GI at 1 p.m.

This doctor quizzed me on what I had eaten in the last 48 hours. She was not happy I had eaten at all. What she said next, I need to be written down on a prescription pad for all the world to see and believe. She told me salad is the WORST thing I could be eating because it is so fibrous. She mentioned meat, especially red meat as well. After I mentioned I had shared some ice cream too, she quickly responded that ice cream was great. Eat all I want.

I’ve waited my whole life to hear words like that! There is a God.

The test results validated what I had been feeling. My esophagus was completely full of food at 1:30 p.m., almost 24 hours after I had eaten. The little meal I had the day before was right there for all the world to see.

We have consulted with a surgeon and are strongly considering having a robotic, laparoscopic Heller Myotomy soon.

I share all of this because we need to raise awareness of Achalasia. If others have any of these symptoms, just start a diary and find a reputable gastroenterologist.

With a smile and a happy heart,

Elle