Monday, March 5, 2018

Gradual Change

(I'm not looking forward to the sixteen days of liquid but at least ice cream counts as a liquid!)
                 Every few years I get an upper endoscopy. I have a condition called Achalasia (which basically means my esophagus does not swallow). My esophagus doesn’t work properly to get the food I eat down and my sphincter to my stomach doesn’t cooperate to let it in. My esophagus muscles are too weak and my sphincter muscle is too strong. It’s annoying but something I have learned to live with. I have to check on the condition of my esophagus every few years to check for cancer and other abnormalities that can come as a result of this issue. I had an endoscopy at the end of 2017, this time with a Botox injection to see if that would help relax the sphincter. Everything in my esophagus came back “normal,” but my Doctor’s exact words were, “Your esophagus looks terrible.” I wasn’t surprised. Years ago, back in 2008, I had a surgery called a Heller Myotomy to help let food get into my stomach. That surgery was incomplete, so it didn’t work. The surgeon didn’t quite cut far enough to help relax the sphincter. It’s not a simple procedure in terms of knowing how far to cut. If you cut too much, that is bad, and if you don’t cut enough, that is bad too. With the Heller Myotomy they cut through your side and abdominal muscles, to cut the sphincter. It is not a fun surgery. The recovery from that was long and pretty painful. Not something I would want to do again.
                In 2014, after moving to an area where there are actually doctor’s who specialize in this, I was told I would need another surgery. A new technology came out in a different country in 2008 (right about the time I had my Heller Myotomy) called POEM (per oral endoscopic myotomy). Instead of cutting through your side they go into your sphincter via the inside of the esophagus. Pretty amazing advancement. From what I hear, the surgery is less painful (3-4 days of pain) and only one night in the hospital (verse a few). However, with my past experience and not wanting to be a guinea pig since very few people had done the POEM procedure who also had a previous myotomy. I decided to wait. I was coping just fine. The surgeon I had consulted told me he really thought he could help me. He was surprised by how bad my swallowing was. During a barium swallow test the tech told me it was the worst barium swallow he had seen! They typically have you swallow and watch for a couple minutes but they had to have me do two different barium tests, one where they waited over 10 minutes to see if the stuff would go down, and it didn’t. I thanked the surgeon and went on my way. I decided to go the route of expanding our family, which 9 months later, included Eve. I figured I would take care of myself later. I was managing things just fine.
                Back to current times. After meeting with the head of gastroenterology at Swedish and then consulting with my thoracic surgeon who works with the gastroenterologist they both made it pretty clear I shouldn’t wait any more. They told me if I waited much longer I wouldn’t be a candidate for the POEM procedure and the next option would be to remove the last few inches of my esophagus. All the years of gradual change had stretched and ballooned out the lower part of my esophagus that the Doctors aren’t sure if the POEM procedure will fix that but they are optimistic (60-70% odds they gave me) that it will work. They are hoping my esophagus will shrink down some on its own if it doesn’t have to work so hard against the tight sphincter.
I knew my esophagus was stretched I just didn’t realize how bad it had gotten. That’s the tricky thing with gradual change. Maybe if I could go back in time and feel what it was like when I ate food 10 years ago it might be a no brainer that things have gotten way worse. But when it’s a gradual change, you adapt, and it easily becomes the new normal. This can be apparent in so many other avenues in life, not just with health. Spiritual health is one that comes to mind. New believers are often very passionate and on fire for the Lord, but as time goes on things can easily creep in that divert your attention away. Maybe you used to spend an hour a day in worship and prayer. Maybe you served more. And for whatever reason the time spent in prayer gradually got shorter. The days spent serving others became less. More life obligations crept in and became the new normal. Maybe you noticed at first. Maybe you told yourself it was just a season. But as time passed it wasn’t just a season, it was the new normal. A new normal your younger self wouldn’t recognize. The good news is just as you slipped out of your old normal you can work your way back in. It may be hard and even painful at times. It might feel unnatural at first and can even seem overwhelming to bring yourself back on the path from which you strayed. So, start small. You don’t have to change overnight. It took time to get where you are at and it will take time to get you where you want to be. Don’t go it alone. Surround yourself with others who may in your eyes, be where you want to be spiritually. And pray.  
I probably would not have gone the route of looking into surgical options again if I was not surrounded by people who encouraged me to seek treatment. People who knew what I was experiencing was not normal or even close to what my normal used to be. I just couldn’t see it. My husband saw it. The nights I am up in pain are becoming more frequent and longer lasting.  These “episodes” as I call them, start with minor pain, which usually leads to my being up all night, and ends with several bouts of vomiting. I originally thought it was heartburn but soon realized this was something different. The Doctors told me it is probably two things, food rotting in my esophagus which makes it inflamed, and my esophagus going into spasm. On the nights I have these episodes I am so miserable, usually for 24-48 hours. During these moments I pray to God to take the pain away and vow to go to a Doctor to see what can be done. Then the episode passes and I am back dealing with my “normal” achalasia and I again think I can manage this. Which is why I am glad I am not going through this alone. I have people to call me out on my stubbornness and encourage change. It’s funny how many things I was trying to let get in the way of doing this surgery, yet every time I tried, God seemed to keep directing me to where I am at now. Deep down, I don’t want the surgery, but I also know I really need to give it a try. As the date gets closer I am finding less and less excuses to try and get me out of it and am accepting the change I have in store. I have surrounded myself with experts in the field, I have a husband who will see me through this, and two awesome girls to remind me the reason I am putting myself through some pain and discomfort. I have faith that no matter the result I will no longer be sitting still, letting my esophagus choose my life path. At least I am taking back control. Yes, this is a subtle analogy to your spiritual journey as well. Surround yourself with those who know God’s word, have a support system, and have faith. So much can be accomplished if you bring it to God in prayer. You don’t know what the future holds. I can guarantee you it won’t be easy, but whichever path you choose, neither will be easy. That’s just life.
                After my endoscopy in November the Doctor prescribed me nitroglycerin (yes, the stuff they use to make dynamite). I was so afraid to take it due to the side effects I read about (mainly the nitro headache and chance of passing out). I was supposed to take it when the esophageal pain started. I had one night where I had an episode but I was too afraid to take it since Levi was on shift and I didn’t want to try it alone for the first time. A few weeks later I had another episode. I waited and waited and waited. Finally, around 4 am when I was about to start the vomiting that happens with my episodes, I woke Levi and told him I was taking the nitro. I had the pill sitting on my lap for over 20 minutes before I finally decided to take it. I took it. Then immediately sprinted to the bathroom and vomited. Apparently, it opened up my sphincter and everything came out. I think I had waited too long to take it, when my symptoms were already too severe, but the good news is I didn’t get a headache and I didn’t pass out. It was small but taking that nitro pill for me was a little leap of faith.
(Little device to measure my ph)
                Now I am at a point where surgery is not something to put aside. My youngest is almost 2.5 years old. I think I’ve waited far longer than I should to take care of this. I had one more endoscopy about a month ago where they did a Bravo study to measure the PH in my esophagus over 48 hours. This would determine whether or not I needed a fundoplication instead of just doing a straight POEM procedure. Basically, if you are opening up the sphincter, you are increasing your chance of having acid come back into the esophagus. If I was already having acid in my esophagus my surgeon would recommend to have the fundoplication at the same time. My results from my Bravo study showed that I had very minimal acid in my esophagus (.3% of the time I believe) and that included some puking due to the Versed and Fentanyl I was given to do the procedure. I don’t do well with opioids.
                Now I’m just waiting. My surgery is scheduled, it will happen this month. I have to be on a liquid diet for 2 days prior and 14 days after surgery. Sixteen days in a row of only consuming liquids. I’m not looking forward to the pain and the actual surgery but I think I’m looking forward to the diet after even less. If you have any great smoothie recipes, or liquid soups, I’m all ears. I know it is not a guarantee that this will fix my problem, and there are risks with the procedure, but sitting around and letting change gradually take me to a point of no return with my esophagus seems far worse. So, here’s to not sliding into a state of comfort and instead getting back to a new normal.

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