RefluxMD is thankful for members like Karen who take the time to share their personal stories and help others seeking relief and good health. At 55, Karen noticed a persistent cough that would launch her on a difficult journey through our healthcare system. But her persistence paid off; today she is PPI free and learned an important lesson – “go with your gut feeling and don’t look back”.
Karen’s story in her own words
My story is a bit different than most acid reflux stories. I didn’t suffer from heartburn. I didn’t feel food coming back up into my throat. I had a cough; a tiny but persistent cough. And that’s what started my journey.
My problem started around age 55 when I tried using cough drops to soothe my increasingly sore throat. When that didn’t work I decided to see my family doctor who then sent me to an ear, nose, and throat specialist (ENT) who diagnosed me with reflux with LPR symptoms. I was stunned! I didn’t have any typical GERD symptoms and I never realized a cough could be a symptom of reflux. My ENT put me on a powerful PPI, omeprazole and scheduled a follow up visit. She also gave me a list of potential trigger foods to avoid and suggested I sleep with the head of my bed in an elevated position. I followed all of her suggestions and realized some symptom relief. With that success, my ENT urged me to continue taking omeprazole, to keep the head of my bed elevated, and to avoid trigger foods. Simple enough!
Knowledge is power
Years later, after learning about the potential health risks of daily PPI use, I contacted my doctor for a referral to a specialist. The specialist scheduled me for an endoscope to evaluate my esophagus and my stomach, along with a barium swallow test. The endoscope found no signs of Barrett’s, but the barium swallow test indicated severe reflux. This specialist then said the surgery to fix it was “awful” and he personally would never have such a procedure. He said the side effects of the surgery were “terrible”, which scared me enough to cancel any thoughts of surgery.
When I found RefluxMD on Facebook I became even more concerned about using PPI’s daily. By this time my cough was getting worse and nothing seemed to offer any relief. Things went downhill when I developed acute bronchitis several times and twice I was forced to the emergency room unable to breathe. My doctors recommended that I schedule an evaluation with pulmonologist who also diagnosed reflux with LPR symptoms. I was then referred to an antireflux surgeon with 36 years of experience, making me optimistic that he might be someone that could help me. This surgeon scheduled a 48-hour Bravo pH study as well as another barium swallow test. The barium swallow test found no changes from my previous one, but the Bravo pH study results were “off the chart”, and not in a good way. My surgeon recommended a Nissen fundoplication and told me that he thought I had an 80% probability that the surgery would resolve my problems. Now at 60, unable to breathe without using steroids and an inhaler, I was ready for anything.
Discussions with others helped in my decision
I initiated interactions on Facebook with others who had a Nissen as well as those considering this procedure. The experiences of those having the surgery convinced me that a Nissen was the right decision for me. Their input and willingness to answer my questions helped me to make up my mind. In mid-January 2016 I had the Nissen fundoplication procedure.
My surgery and recovery went very well, but I continued to suffer with my cough as well as asthma-like symptoms. My pulmonary specialist said I needed to be patient and give my lungs a chance to heal. He and the surgeon both agreed that in 4-6 months we would know if this would lead to the the relief I was so desperately seeking.
Karen wished she had pushed for surgery sooner
Today I’m grateful that my surgery fixed my reflux, which was confirmed with a follow-up barium swallow test. However, even after 6-months I continue to have some asthma-like symptoms. I’m currently seeing both my pulmonary doctor and an allergy/immunologist who suspect that I may have an immune system deficiency and/or mild allergies. Currently I am undergoing additional tests – so it’s more “wait and see”.
I’m glad that I opted to have the antireflux surgery since I’m now completely off all the PPI’s and I no longer worry about Barrett’s or esophageal cancer. My recommendation to others with similar issues is be persistent and demand answers from their doctors. I had to push for answers through this entire process since most of the doctors just recommended more pills. I also recommend that you do your research, get all the information you can, and then go with your gut feeling……. and don’t look back. My only regret is that I waited as long as I did to push for the surgery.
As a follow up to Karen’s comment, she subsequently learned that she has an immune system deficiency and she is now taking natural supplements. Karen, we want to thank you for sharing your story and we are delighted with your progress. We hope you remain persistent and continue to push your doctors until you are completely symptom free.