|Manometry charts showing Achalasia subtypes|
I started experiencing Achalasia symptoms in May or June of 2015. They progressively got worse, to the point that I couldn't drink fluids in March of 2016. I had lost 25lbs, and had become dehydrated and malnourished by the time I was admitted to hospital for surgery that would mitigate the problem.
What I hope to Achieve with this Post
- Summarize what happened for interested friends and family
- Help increase awareness about this disease, as it is frequently mis-diagnosed
- Hopefully help others with Achalasia by sharing how my story unfolded
Achalasia has an incidence of about 1 per 100,000 per year, and a prevalence (how many people are living with it) of about 1 in 10,000.
Mine started in June of 2015 with the experience of being at a conference dinner table, and not being able to get food to go down properly. This discomfort persisted for a couple weeks and I went to see my family doctor about it. I had been experiencing pretty severe heartburn for about 6 months prior to this, or certainly chest pain that I interpreted as heartburn.
I was sent for a couple of tests over the summer - a Barium Swallow/Xray which showed "esophageal spasms" and not much reflux from my stomach. The next test was to send a Endoscope (camera) down my throat, for which I was mercifully sedated, and it showed nothing out of the ordinary. I was seeing a Gastroenterologist by this point and he was convinced it was acid reflux - often clinically called GERD. We managed to get these tests done relatively quickly by being available at short-notice for cancellations.
My wife and I were of course doing our own research, as it was persistently uncomfortable, and I had been limiting my diet to try to get relief from the reflux and discomfort. Achalasia is rare enough that it is often misdiagnosed as GERD, and this happened in my case as well. Thanks to the help of this great blog by an engineer in Ontario, my wife identified correctly that my symptoms sounded a lot more like Achalasia than GERD.
This was in August. The most frustrating part of this whole experience was the waiting for further tests, appointments and stages. For example - we were sure it was Achalasia in August, and it took until the end of February for my turn to get the definitive test that would confirm Achalasia: esophageal Manometry (examples of the results pictured above). During that time I had gone from discomfort - eating softer foods over the course of an hour - to being reduced to 3 to 4 boost-type drinks per day with hopefully some soup and/or well-mashed potatoes with gravy.
At the end of February, the Manometry test confirmed what Lauren and I were already certain of: Achalasia. Fortunately we had done our advanced reading and so were aware of the options and ready to go to the current best practice treatment which is a Heller Myotomy, with a Dor Fundoplication.
Unfortunately, there was more waiting (and corresponding suffering for myself, my wife, and my extended family) in the non-urgent stream of the Canadian medical system. I'm a fan of our system in general, but waiting at sometimes becomes unbearable. By this point many in my family were getting quite worried, as I was now down 25lbs, and at times unable to eat even soup.
My surgery consult took a couple of weeks to be scheduled, this initial appointment to discuss options with the surgeon was 5 weeks after the manometry test, with the prospect of having the surgery 5 to 8 weeks after that. Unfortunately my ability to take in fluids and nutrients had continued to deteriorate, to the point that I went to emergency in later March, as I was unable to take in fluids and had become both dehydrated and deficient in nutrition (as well as sleep).
I was not sleeping several nights a week because food that had not gone down would come up in the middle of the night, waking me up to choking on it every 20 minutes or so.
I was admitted as an emergency patient because I was no longer able to get enough nourishment down, and put on an internal hospital waitlist for the surgery. After another 5 days of eating & drinking absolutely nothing except for IV fluids, I had the surgery in time for Easter.
I'm currently 2 weeks post operation, and already feel significant improvement. I'm able to eat soft foods, including one of my favourites - Shepherd's Pie - as long as the quantities are kept small. I look forward to returning to a mostly normal diet.