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My Achalasia Story

Monday, July 25, 2011 @ 10:07 AM
posted by: Karen Jean Matsko Hood

Dear Fellow Achalasia Patients,

I write this blog today during a beautiful, sunny Spokane, Washington, Sunday. As I write I wonder how all of my fellow achalasia patients out there are doing.

Achalasia is a rare disease. I know from experience that it helps to talk to others who have the same affliction. It is hard to believe that October 4, 2011, will be the fourth anniversary of my repair surgery. Life is far better than it was for the seven years before the surgery. Prior to that time, I was not aware of the term “achalasia.” Therefore, what I would like to tell all of you is that there is hope. Do not struggle with your current situation, as professional help is available.

A CXR showing achalasia (arrows point to the outline of the massively dilated esophagus)

In my case I was officially diagnosed with achalasia in August 2007. I had no idea what achalasia was and was not particularly worried with the term. Being as curious as I am, I immediately went home after my esophageal dilation procedure and waited for the anesthesia to fully leave my body so I could hop on the Internet and read exactly what achalasia was all about. Holy Molie! I became scared almost to death! There is truly frightening stuff out there on the Web. In fact, after reading the stuff, I thought I would be dying soon, and this was no happy thought!

I have a lot of people who depend on me and a lot of responsibilities in my life, so I began trying to take care of things in my now suddenly expected short life. I called my doctor, and he said I most certainly was not near death, but I thought he was just trying to be optimistic and nice. I wasn’t having any of it!

To my husband’s dismay, I planned my own funeral arrangements to save him the trouble. Yep, I selected a simple coffin and a nice cemetery with a view. It seems that relaxation for me only takes place when I have a view. Weird as it may seem, I was at peace making time payments on my selected plot and even bought one for my husband next to me. Of course, he would not be using it for a long time after me, since he would have a long, healthy life, I figured. The thought of him marrying too soon, without a respectable time mourning my passing, was disturbing, so I pushed those thoughts right out of my mind. I was having enough trouble as it was.

Back to my achalasia. Now it was time to complete more research, so back to my computer I went. I ordered every natural remedy out there, although there were only a few at the time. Still hopeful in spite of my funeral planning, I faithfully followed directions on all of them. My physician told me there was no cure but that most achalasia patients live with the disease and do not die from it. Yipes! That was not reassuring.

"Bird's beak" appearance, typical in achalasia.

My weight dropped 69 pounds suddenly. It scared my kids and my husband. Previously I was a tubby, but this was no way to lose weight. I could not get or keep much food down. My stomach sphincter was so tight that it would allow only a trickle of fluid through to my stomach. My regurgitation was out of control, and since my diagnosis was vigorous achalasia, it brought the worst type of pain. Sometimes my esophageal pain would last an hour. My family timed it, and it seemed that I could not bear the duration of the pain. Often I would run out of the house and walk around the house, using my animal instinct to flee. Nothing worked and for the first time in my life I could understand people wanting to die because of pain.


Stay tuned for the second installment of my story. There is hope at the end of the tunnel.

Karen Jean Matsko Hood



Achalasia Support Group
James and Karen Hood Foundation
507 North Sullivan Road, Suite LL-6
Spokane Valley, WA 99037-8576 USA
Phone: (509) 924-3550 | Fax: (509) 922-9949



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