It seems without fail I am asked this question at least once a week. While I try to answer it for those who ask, I struggle to not gross them out or try to seem to dramatic by sharing "what life really is like living with this disease named Achalasia". So I thought I would try to explain it here in a blog post, I hope I am able to actually describe it in a way that readers can get a visual for what a person with Achalasia experiences in a day.
Well the day of an Achalasian starts before dawn. Imagine waking up in a coughing spell that concludes with you puking up whatever has been sitting in your esophagus since before you went to bed the night before. That has become the normal routine in my life, in fact most of the night has probably been filled with episodes like this with the hope that you will actually get some meaningful sleep. Then your alarm goes off and you roll out of bed, to start your waking hours of the day like every other person without this annoying disease. You get in the shower and wash off splatters of puke from your night of sleep. And prepare yourself for the tasks that lie ahead of you. After getting dressed, you make your way into the kitchen to grab what has become your new breakfast a bottle of Boost, a bottle of water and some gummy vitamins. I slowly start to drink down the Boost hoping that it makes it into my stomach to provide the needed nutrition so I can make it through the morning. Of course on cue the Boost is rejected and comes backup filling my mouth so much that it looks like I have chipmunk cheeks. Again, I swallow it back down hoping it will stay down this time and try a technique of swallowing mouthfuls of water to create enough back pressure on my LES in hopes some of it makes it though into my stomach. With a little bit of patience, I feel a cool sensation rush into my stomach and my hope has been realized this time.
I head out the door for work and make sure I grab my spit bottle just in case some of the water decides to make a reappearance back in the mouth. I must state that having been recently diagnosed with Achalasia and waiting for surgery; what I am describing here is my normal routine before having surgery. I hear from others in my Achalasian support group that after surgery life returns back to some normalcy that people without Achalasia experience on a daily basis. I so hope they are right about that, but what has me on edge about it is that they keep stating that everyone's experience is different.
Monday, June 4, 2012
The Next Step
Well, I have already taken the next step in the Achalasia journey. On April 25, 2012, I under went surgery and had a Heller Myotomy with a dor fundoplication. The surgery was a success thus far. So for those wondering why was surgery the next step. As I researched all the possible treatments for Achalasia, I learned that you have basically four different choices. 1 - Choose to do nothing and deal with the side effects until you can not deal any more. For me I had already been doing this for over four years and honestly was at my wits end. I needed a better solution. 2 - Choose to get a Botox injection into the muscles and hope it relaxes the muscles for some amount of time and offered some relief. After research I learned this was a very temporary option and most people only got at most a couple of weeks of relief. Also, I learned that having this done could make option 4 more difficult and less successful. Personally, I was looking for something more permanent and a couple of weeks of relief was not it. 3 - Choose to get a dilation. What is a dilation? This is a procedure where they run a scope down your throat with a balloon on the end and force the balloon into the LES and then expand the balloon in an effort to stretch the LES muscles and even potentially tear the LES muscles. Just the thought of that procedure sounded unpleasant and then I learned that having this procedure done would maybe only offer relief for up to a couple of years. The risk with this was that the scaring associated with this procedure again would limit the chances for a successful option 4 and could be even fatal if it ruptured the esophagus. Again it did not sound like the best option for me and so I past on choosing this option. 4 - Choose to have surgery, Heller Myotomy. So I met with a surgeon and talked about what this option would and could do for me on my journey. I then did some research and talked to others who had been down the same road I was considering heading down. My conclusion was surgery was the best option. Now I must say that choosing an experienced surgeon is very important because this is a very critical surgery and if not done correctly could cause further complications to an already miserable existence. Luckily for me that within the HMO network that I belonged to was a very experienced surgeon who had been performing this surgery for more than 14 years.
So now I have been recovering for almost six weeks and life is getting back to normal, a new normal. I am now able to eat almost everything I was able to eat before I started having swallowing issues. I am able to sleep through the night without being woken up by regurgitation issues. I will say that meals do consist of drinking plenty of fluids to make sure all swallowed food makes it into the stomach. But life is good compared to what it was like prior to surgery. I hope those who are faced with making a decision about what treatment to chose, find this post helpful.
Wednesday, February 8, 2012
What is Achalasia?
The other day I came face to face with this question, "What is Achalasia?" I can tell you that at first I was a little perplexed by the question. But first let me tell you why I was faced with this question. I have been having issues with swallowing for a few years now and at first the doctors diagnosed me with GERD in 2007. They started me on medication to deal with Acid Reflux but all those medications seemed to do was make me feel worse and never really help the swallowing issue. So I lived with the condition for the next 4 years, as it got worse and worse. Finally, I got tired of the now constant vomiting and went back to the doctor and complained some more about what my current symptoms were. This time after going through the same battery of tests they changed the diagnosis to Achalasia and that brings me back to the question of "What is Achalasia?". So I sat down at my computer and went to my trusty friend Google and asked. Google responded with a list of results and the first link I visited was another trusty friend Wikipedia, http://en.wikipedia.org/wiki/Achalasia As I started following the links and reading about what Achalasia was I started asking the questions "How?" and "Why?" Well to my disappointment no one had the answers to those questions. So then I followed a link to http://achalasia.net thinking that it maybe a support group or something. On that site, the author offered a natural way that seemed to work for him to "cure" Achalasia that involved taking Vitamin B Complex supplements. So I read the testimonies on that site and thought well why not try it and see. While I have had some reduction in some issues, I would have to say that it is no cure but helps provide some comfort while I wait to be scheduled for surgery. Then I came across another site http://achalasia.us/ that is more of a support group then the other site. Both sites though helped me feel like I was not alone in my battle with this condition or disease of Achalasia. My plan for this blog is to chronically record my Life with Achalasia. I hope and pray that some will find this blog helpful and informative as they deal with Achalasia in their own lives or the lives of loved ones they support.
Subscribe to:
Posts (Atom)