|American Idol winner Lee Dewyze|
visiting Dusty in intensive care
What’s up with GERD? Hydrochloric acid. That’s what’s up. What makes GERD so nauseating is the hydrochloric acid that leaks up from the stomach and into the esophagus, due to a problem with the upper stomach sphincter muscle. What makes it worse is the accompanying nauseating mucus that is produced in the esophagus as it protects its own surface against the stomach’s acids.
This was all new to me, and especially not something I had anticipated with regards to Duchenne muscular dystrophy. GERD was certainly not something on the Duchenne radar of things to worry about. My son Dusty, who is 19 had been complaining of difficulty swallowing, and had a feeling of food being “stuck” in his throat. We were told these were common symptoms of acid reflux and were given a proton pump inhibitor, which is a small pill taken daily that suppresses acid production in the stomach. That was a year ago, and things didn’t improve. We tried to control the types of food, giving him softer or easy to swallow bland foods. But all along, Dusty was eating less, and continued having a sore throat in spite of what or when he ate. What we realized was that all along, food wasn’t the problem; it was his throat, reacting to the acid that was continually being forced up from his stomach.
Meanwhile, the decline in cardiac and pulmonary functioning steadily continued. After all, Dusty is an older boy with Duchenne and these are the expected issues to watch for. Dusty is on the recommended heart medications, assistive breathing devices, and other standard of care treatments.
In the last month we have had to take Dusty to the ER on three occasions, each time dealing with tachycardia (rapid heartbeat), nausea and difficulty breathing. After a total of 26 hours spent in ER, and four nights in hospital, three of them in cardiac intensive care, we stabilized the heart, stabilized his pulmonary and thought we were home free. But there was something else. Dusty just didn’t feel well. He still had nausea, and an increase in mucus that doctors were thinking was a pulmonary issue. But no. That wasn’t the case.
That’s when I heard about GERD.
What is GERD? And why is it happening?
GERD is gastroesophageal reflux disease; GORD, gastrooesophageal reflux disease; gastric reflux disease, or acid reflux disease. It is a chronic symptom of mucosal damage (mucosa line the interior of the esophagus) caused by stomach acid coming up from the stomach and into the esophagus.
When the muscle valve in the esophagus, called the lower esophageal sphincter loosens or weakens, acid splashes up from the stomach. Normally, this valve should close tightly after eating to prevent acid from escaping.
Part of the diaphragm forms an outer sphincter. In Duchenne, when the diaphragm is weaker, and because the diaphragm muscle is integral in functioning of the sphincter, the valve is permanently weakened or damaged and doesn’t work as well.
Barrett’s esophagus is often diagnosed in those who have had long term GERD. It can be concerning because it increases the risk of esophageal cancer.
I have also read about another kind of acid reflux, which causes respiratory and laryngeal signs and symptoms, and is called laryngopharyngeal reflux (LPR) or extraesophageal reflux disease (EERD).
How do you treat GERD?
The medications used include proton pump inhibitors, which prevent acid reflux over a period of time. These medications decrease the production of stomach acids. Some proton pump inhibitors can help to heal the esophageal lining, which may have become damaged from persistent acid reflux. Other treatments include surgery that helps strengthen the sphincter.
For now, the doctors have Dusty on double the dose of the proton pump inhibitor. In the last month Dusty has been unable to eat solid food. Fortunately he is able to tolerate and supplement his diet with nutritional drinks. In a few weeks there will be a re assessment of any change or improvement to GERD.
Going back to our visits to the ER prior to the GERD diversion, the swing of emotions was intense. Having cardiac issues is serious enough, and watching Dusty’s heart maintain at 200 beats a minute for two hours was frightening. His body literally vibrated in time to the beats. In the ER, it was difficult watching him struggle with nausea, difficulty breathing and feeling unwell. I made sure I kept my mind present with the task at hand and stopped myself drifting into the “what ifs” and the fact that the Duchenne community had recently lost many young boys/men to Duchenne. My mind struggled with this as I helped Dusty’s frail body sit up to cough.
The word got around fast that Dusty was in hospital, mainly due to a facebook post I had made while waiting in the ER. The response was tremendous. Literally hundreds of messages came pouring through from all over the world. I read through the flurry of messages as each came through on my cell phone, and read each one out to Dusty. I was moved and touched by the outpouring of thoughts and prayers and messages of support, some from people I hardly knew. The messages were comforting. I felt the arms of humanity around me and the oneness of us all.
People have been inspired by the journey of Duchenne that so many of us are on. Our stories are told again and again, inspiring stories of our young sons and their families who know what it means to literally make the best of everyday. Through this journey I have met the most kind and caring people. Living with Duchenne can bring out the best in people whether they are on the journey themselves or not.
Yes, it is a harsh disease. Our hearts break together. In this way the Duchenne community is close. Somewhere in between the ups and downs of the cruel reality of this disease, we find life’s rainbow, the subtle, unexpected beauty that appears when we are not looking for it.
Dusty is still unwell, and he will need to wait out the proton pump inhibitor to work. It can take weeks. For now, he prefers to sit in a dim lit room to help with his nausea, close to an assistive cough-machine that helps to clear the mucus caused by the acid in the esophagus. For the moment we won’t be going on our daily walks, or flying his remote-control planes. Instead we will hang quietly and patiently indoors for this to pass. When I look into his blue eyes, my mind stops racing and worrying, and I feel a sense of calmness and ease. It is moments like these, and there are many, when all is good.
Please check out http://coalitionduchenne.org