My Struggle With Achalasia Chapter 1
Categories: Life Stories
So you may wonder what this story has to do with my primary blog and Living off the Grid... really nothing, but consider it a plug for the illness I have suffered and many others still suffer from. It makes many facets of wilderness or off-grid living much more difficult, but I haven't let it slow me down by the Grace of God.
In 2004, I was a pretty normal guy living an extraordinary life doing what I loved. I had a music school with a few hundred weekly private students taking lessons, group classes, recording rooms, and eventually bloomed into a full fledged music store. After seven years teaching people to play, I suddenly lost the ability to swallow food. When I say suddenly, yes it was quite rapid. We ate out every Sunday at Abuelos Restaurant for fantastic Mexican food. It was always delicious, but I remember that day like it was yesterday as I have re-lived it in my mind over and over. It was the first time I felt the chips get stuck, and not go down.
They always had the chips out in a hurry, but were slow to bring a drink to wash it down. This one particular day, I raced to the bar for water, and they couldn't get it to me fast enough. I downed it in a hurry struggling to push it through.
The next few months would be visits to a gastroenterologist who scheduled me for a series of tests. One of those was a barium swallow test. This was a test which allowed them to see what was happening inside when I swallow. The doctor had ordered a test on my throat area. I was quite the avid Googler at the time... back in 2003, and I had self-discovered that my symptoms matched Achalasia. I told them to forget the throat, to point the camera at my sphincter, down lower. I told them it was achalasia. As much as they were determined my Gastro didn't order that test, I was determined that was what it was.
They followed my direction, and changed the doctors' orders. It was about 30 minutes later that the Radiologist comes in and says... "how did you know it was Achalasia?" I said... "Google" proudly. The knowledge of the internet was a brand new thing, and it's power yet unknown to medical practitioners, but I was well versed in computers and had two part-time computer geniuses working at the music shop, so I was up with the times.
The next couple of months, my "Gastro," as I will now refer to him here, gave me Nefedipene, Channel blockers, Nitroglycerine all as ways to relax my muscles so that food could get through. Eventually they failed.
It is at this juncture that I question whether this description of what I've been through is to be geared towards those who have this condition so they can better cope with what is to come, or toward the masses as so many people, including Doctors are so in the dark as to what Achalasia is and how it impacts people. I will attempt to do both in this brief. Now 12 years since my surgery, Facebook has provided a way for those of us who have suffered this affliction to come together and communicate. 12 years ago, I was told that there was no known cause, and that surgery was the best option.
I was fortunate to be under the care of a Chiropractor who's father died from Achalasia. Considered in 2003 to afflict 2 in 1 million people, it was considered quite rare. Most Gastrointerologists had never seen a patient with Achalasia. So I considered myself fortunate to have met the son of another. He lost his father before the surgeries done today were prevalent ways of treatment. As much as Chiros tend to be nutritionally founded and he was no exception, he allowed the marketing side of his pitch to take a back seat to the traumatic loss of his father as he advised me not to delay and to go find a surgeon to take care of it.
With my frustration over my Gastro and his lack of knowledge in Achalasia, I pretty much dismissed him as I did everything I could to fix myself from healthy foods to chiropractic care. I had lead a stressful life, but I parted with my music business into bankruptcy as I was suffering so greatly with the loss of weight and utter starvation. I lost over 90 pounds in 9 months time, and then went on to lose more after surgery.
Achalasia is a condition where the sphincter muscle that opens and squeezes food into your stomach grows large, and does not relax to allow food in. It holds tight and shut. It is considered a nerve damage condition, and once this is happening, there's not much that can be done to fix it. So the solution is to sever the muscle to let the opening be a permanent one to allow food into the stomach. This cutting of the muscle is called a "Heller Myotemy."
There are numerous lesser procedures which are often done, but I avoided those for several reasons. A baloon dialation is where they put a baloon down your esophagus, and expand it trying to tear or open the muscle. This has some degree of success, but comes with high risk. A preforation or tearing of the esophagus could lead to open chest surgery to repair the damage. The risk of this is too great for my liking. A second short-term solution is botox injection which based on communication I've seen from many who have done this procedure in the Facebook group, I'm convinced this procedure harms the benefits of later surgical procedures. I'm not sure how, but I've seen a number of those who had botox complain of having their surgeries redone multiple times. I haven't seen such a recurrence in those who begin with surgery. I am a capitalist and a business man. I know that a clinic stands to make more money for open chest surgery than for a baloon dialation or botox injection, so the financial gain for a mishap is far greater than that of a smooth procedure. I look at financial motivations and ethics in every doctor or clinic I visit as well as reported statistics. This is where a personal referral comes in really handy, but before Facebook, was hard to come by. Now with more than 2200 in the Achalasia support group, there are plenty of us to lean on and count on for advisement.
So I was nervous about any procedure, and my Gastro was nervous about advising me. He had seen one other patient (in his lifetime) who he thought had Achalasia. That didn't make him sound confident or me feel confident. He was young as well. I went in for a scope early on with him. As the story goes (as I was under sedation and don't remember) I did a lot of crazy things during the scope, including pushing the Doc around and pulling the scope out. Then I was saying all kinds of crazy on the way out.
I mentioned the Heller Myotomy, which severs the sphincter (LES) muscle. There is typically a second procedure done at the same time which is "Dior Fundoplacation". This procedure does two things as I understood it years ago... 1. It covers the exposed esophagus giving it a form of protection. 2. It puts a curve in the esophagus preventing reflux, thereby curbing the previous esophageal cancer and "Barrett's Esophagus" statistics.
So I progressed downhill toward what seemed my the end of me...... 8 months since that first meal at Abuelo's Restaurant I had lost so much weight, and had been 3 days without food or drink going down. Eating out had become downright embarrassing, yet I refused to give it up. I had learnt to beg for a cup at every restaurant, and my kindness rapidly faded after the first few episodes puking in a clear glass cup in front of everyone. I learned to be bold enough to tell them .... "I'm going to be puking in it, so clear glass won't do." After offending a few places, and weeding out the ones who didn't keep paper cups around, I had a few regular spots that were comfortable who understood my delimma. If you ever wonder how a kind and sweet young person turns into a grouchy old man or woman, this is where it begins.
During this terrible time - sitting on month 8, I would like to share a couple of insights to those of you who are nearing the time when you feel death is coming if you don't get surgery fast. I didn't have a clear path. I had been trying at this point for 2 months solid to schedule surgery, but couldn't get a surgeon to call me back. I had a recommendation by my Gastro to Mayo, but Mayo never returned calls. I tried to robotic surgery in San Diego, and they never returned calls. I had one in Missouri who called me back a couple months after I had received surgery. I say AD as in after I would have been dead. Don't count on them to want your money bad enough to chase it. You might need a friend to help you call. I was the talker in my family. I had lots of gumption, as everyone saw me as the real life energizer bunny and yet... it was at this time that I grew weak. I would go go go as usual, and then get dizzy and fall over. I learned to get food down even when it wouldnt... I would go for a run outside... about half a mile. When I got back, the blood was flowing away from my esophagus. When I got back, I could get a few quick gulps of water down, and maybe a piece of a hot dog. That would give me the energy and hydration to get through another 3 or 4 days until I was having dizzy spells again.
My wife, Amy was working full time. She was overwhelmed with that, and really couldn't put up with my disorder too. The way she saw it, I was probably going to die soon, and didn't know what to do about it. She did her job as she saw it working so I could have insurance to pay for this, and was too overloaded with two babies at once.. just a year apart. We had run out of money while I was in the middle of adding on to our home when I got sick. I literally left a 16x30 basement dig next to the house with 3 feet of water at the bottom of it. The head of our bed laid against the wall that was undermined by the occasional cave-in. In the middle of the night we would hear a big splash, and wonder if the house was going to fall in. The stresses of tornadic storms in Oklahoma didn't make it feel any better either.
If stress was to be the cause of Achalasia... I could see that. I was the kid who ate zero vegetables... as well as the adult who ate zero vegetables. I never drank water. I inhaled every meal through college with 5 minutes to eat and run... most of the time. I slept 2 hours per night 6 nights per week for four years of college, and usually got a good 8 hours on Saturday night. I grew up in the mountains and ran 10 miles per day most of my life... always overdid it. When all of this began, I was still working 100 hours per week at the music shop, and overloaded was my middle name. I always believed it was one of these contributing factors that caused the Achalasia.
So I had been 9 months, and still no call from a clinic. I had been 5 days without food or drink. 5 days prior, I got a piece of a hot dog and a swig of water down, and it had been 5 days before that since previous. Basically, I was starvin' to death and dropping weight fast. I was still working nonstop trying to stay afloat. My friend Dewayne heard I was struggling, and stopped by to say hello.
He told me some things I didn't know about him... that he had a nissin wrap from Dr. Siemens in town, who was one of the most sought after gastro surgeons and educators in the field, and had done countless similar procedures. Right after he left, I made a call.
They got me in the next morning to visit with Dr. Siemens. They told me how the timing couldn't be better, that he had just come back to town from an educational tour of sorts.
He told me "What took you so long?" And asked if I wanted to head in "today?"
We did the procedure the next morning... Heller Myotemy with Dior Fundoplacation. As terrified as I was of surgery, it took 100 pounds gone and inability to eat... oh and my fear of needles and regular IV visits as the alternative... to make me excited about getting fixed. What was terror of surgery became utter necessity.
I went in for a Heller Myotemy in 2004. This is what that procedure looks like. In addition I had Dior Fundoplacation.
Here is a good video on the more recent POEM procedure. I'm not a fan because I'm already terrified of surgery... especially something going down my throat
Notice here, even a few years later, I was still unable to put weight back on