Living with Illness

Sometimes in life we take things for granted, including our health.  One moment we feel just great, and the next moment something happens and our life is being changed.  That’s how it often is with illness.

In the spring of 2009 I started waking up at night, coughing.  I thought it was just a cough or cold, but it persisted and I went to my doctor.  He ordered a chest x-ray, said it didn’t look right, and sent me to a gastroenterologist for some additional tests.  Esophageal Achalasia, the fabulous gastroenterologist told me.  I had never heard of it.  How could I have a disease that I had never heard of?  I only learned later through online research how lucky I was that HE had heard of it.  Lots of people never have, including many doctors.  He sent me to a specialist – a surgeon.

Profound thanks to Dr. Thomas Rice, who changed my life.

Profound thanks to Dr. Thomas Rice, who changed my life.  (photo from clevelandclinic.org)

So off we went on the 150 mile trip to the Cleveland Clinic for a meeting with a thoracic surgeon who is considered one of the most experienced in the world in the surgical treatment of Achalasia.  Dr. Thomas Rice and his entire team were incredible.  He informed me that I may have had this disease for many, many years without knowing it.  I left his office scheduled for surgery six weeks later.

Let me back up for a moment and tell you about this illness.  Esophageal Achalasia is both a disease and a condition.  It means the smooth muscles in the esophagus that push food through the lower esophageal sphincter and into the stomach no longer work properly.  They lack the peristalsis (motion) that forces the food through the esophagus and into the stomach.  In addition, that sphincter tightens up.  So food becomes stuck in the esophagus for long periods of time and the esophagus, itself, becomes misshapen and distended.

Between my diagnosis and surgery, my condition worsened quickly.  I was no longer able to sleep lying down.  I had to sleep propped up on the couch to keep from choking and aspirating food into my lungs.  I was able to eat only small amounts at a time, and even liquids were hard to get down sometimes.  But the lack of sleep was the worst.  It’s very hard to function with chronic sleep deprivation.

The surgery is called a Heller myotomy – a permanent opening of the LES.  It is often done in conjunction with a partial fundoplication – a wrapping of the upper part of the stomach in an attempt to prevent acid reflux.  I had laparoscopic surgery in January, 2010, with Dr. Rice as my surgeon.  I was in the hospital for just two days, and it changed my life.

Recovery went well.  I was not allowed to lift anything heavy for six weeks, was on a liquid diet for a week, and then graduated to soft foods for several weeks:  pasta and applesauce.  It was a month before I could eat anything crunchy.  The liquid/soft diet is designed to allow the internal incisions to heal without tearing.  I was also allowed no caffeine, mint, tomato, or acid-based foods that could potentially cause reflux.  Herbal tea became my substitute for coffee.

The surgery is not a cure.  Achalasia does not go away.  It will always be with me and my condition can, and probably will, get worse over time.

One of the worst parts about having Achalasia is the esophageal spasms that sometimes occur.  They are incredibly painful.  When I have them it sometimes feels like an elephant is sitting on my chest.  Sometimes taking high powered antacids helps, and sometimes all I can do is try to take deep breaths and wait until the pain passes.  I am so fortunate that they only happen occasionally, but they still happen even post-surgery.

For now, I have far more good days than bad days.  I am often the slowest eater at any table, making sure to chew food thoroughly before swallowing.  But there are times when it feels impossible to get food down.  The textures of some foods make them very hard for me to eat:  very doughy breads and tough meats are especially bad.  And sometimes I can eat spicy Italian or Mexican with no problems, while other times the acid reflux leads to severe spasms.  Extreme cold has a terrible effect on my esophagus and LES, so getting really cold drinks and soft ice cream down are almost impossible.  For some reason hard ice cream is okay, if I take it slow.  In addition, stress can make it worse, so I work very hard to try to manage my stress level when possible.  But I can sleep lying down, and that’s a blessing.

There has been very little research into what causes Achalasia, but it is generally believed to be an autoimmune condition.  It is rare, affecting only about one in 100,000 people.

Now I make an annual trip back to the Cleveland Clinic for some tests and a quick checkup.  I recently learned that Dr. Rice is retiring, which is sad since he has so much experience dealing with such an unusual condition.  I hope to still be able to see his PA, who has been absolutely wonderful over the years.

Thanks to the Internet, I have been able to connect with others who have the same disease/condition.  In making those connections, it has become apparent to me that many cases are much more severe than mine, and that makes me sad.  It can affect people of all ages, including children.  In addition, this disease affects each person differently, so that our symptoms are not uniform and the foods we can manage are not all the same.  For example, hot beverages are very helpful for me as the heat seems to keep my LES open better.  Ice cold anything is often a problem.  But there are some who find that very cold food helps more than hot.  This is just one of the oddities of this condition, but it helps tremendously to know that there are others who can be a sounding board from time to time and we can encourage one another online as we try to navigate this unusual illness.

I have written this with some trepidation, because the very last thing I want is for people to treat me differently or feel sorry for me.  I do not need or seek sympathy.  My family and many of my friends already know about some of my struggles with this illness, but I do not dwell on it.  This is something that I have learned to live with and am fortunate to have excellent care that is not too far away.  But I have become more and more interested in raising awareness about this rare disease, and letting others who have it know that there are treatment options – many of which do not include surgery if that’s not right for some.  This is one platform that allows me to spread the word, and if you have questions I would be happy to try to answer them.

In addition, I would encourage you to consider for a moment that people may be afflicted with something that has no outward symptoms.  Let’s not judge each other for things we can’t see and may not understand.  Each of us carries some burdens in life.  Let’s try to buoy one another up when we can!  And for all of the things and experiences I would still love to have in my life, I can tell you this quite honestly:  if you are lucky enough to have good health and to be surrounded by people you love, you’re lucky enough.

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11 thoughts on “Living with Illness

  1. Well written and maybe the best place to send people who don’t have a clue what we go through. ..Dr. Rice also saved me. He corrected my first heller and only three years later he removed my esophagus due to all the issues I had. Just in march, he again saved me with bile redirection! And you are so so right, his PA is awesome too…good luck to a fellow achalasian

  2. Your entire post is a great insight into the life of someone you would never suspect to be suffering with a debilitating illness. Your final paragraphs are views that I run into all the time when “talking” about my spinal injuries with people. It’s difficult to put yourself out there when you have health issues. At the same time, I think we miss out on opportunities to learn from or identify those dealing with health problems.

    Of course, I don’t go into a conversation blurting out my injuries. But I do find ways to work the topic in. I have been amazed to find people suffering with similar symptoms and conditions. Those with illnesses I can’t identify with; well, we always have the topic of coping.

    Health issues are very private matters. My late mom kept her problems from her own doctors until I started going with her and “reminding” her of her symptoms. We don’t want to be morbid, but we don’t want to be ignorant. Support comes in many fashions.

    I appreciate you bringing this up on your blog. I’m sorry I didn’t know, but I hope you continue to get the level of care that you’ve had to this point. If you ever want to grab a cup of coffee and just rant about it sometime, shoot me a message on Facebook. 🙂

    • Thanks, Matt. I think I have had it wrong for a long time. Maybe talking about it isn’t a sign of weakness. Maybe talking about it is a sign that I’m ready to talk about it, and it has just taken me some time to get ready for this stage.

      We should get together some time soon. Take care.

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