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The journey to dysphagia management

dysphagia journey

Written by Jana Zalmanowitz M.Cl.Sc, Reg. SLP, SLP(C)

Prior to becoming a Speech-Language Pathologist (SLP), Jana worked as a research technologist, assisting in dysphagia research. This sparked her interest and she has continued to serve this population as a SLP in both hospital and private practice settings.

June 1, 2022

A Patient Story

There are many causes of dysphagia and its impacts can look different from one individual to another. The road to finding out dysphagia management strategies can vary widely. Despite these differences, it can be helpful to listen to others’ stories and learn from their experiences. This is what led to our conversation with Heather Miller, who has given us permission to share her story. Heather is 46 years old and a strong advocate for herself and others. She describes herself as always looking for the next adventure. About 10 years ago, she embarked on an adventure she never wanted to go on – her journey to obtaining the diagnosis and treatment for dysphagia.

Heather lives with dysphagia due to an issue with her esophagus, which is the part of the body that carries food from the throat to the stomach. She offered to share her story with us in hopes that her path could help someone else. The main theme that emerged through her struggle to find a diagnosis and management for her swallowing disorder was the lack of emphasis on her quality of life. Her experience has given her ideas and perhaps a bit of hope that the journey for others may not be so harrowing.

How it all began

Ten years ago, Heather was a healthy 36-year-old woman, living a “regular” life. She worked, stayed physically active, and enjoyed time with friends and family. One day, she began experiencing excruciating attacks of chest pain. Thinking she was having a heart attack and passing out from pain, Heather wound up in the emergency room. This happened multiple times and each time she describes she was “pumped full of drugs and sent home”.  Heather was ultimately found to have a large tumour in her chest. She had surgery to remove it, and endured a one-year recovery. This was when dysphagia became one of her primary problems.

The evolution of a swallowing disorder

One day, Heather noticed a new type of chest pain. She went back to her doctors, but they did not feel follow-up was necessary; Heather felt otherwise. Still, she was on her own to find new providers and relay her complex history. Through trial and error, she noticed that when she drank only liquids, the pain eased off. Slowly, the type and amount of food she was able to consume became smaller and smaller. Over the next number of years, over countless visits to different specialists, her pain and dysphagia worsened. While Heather tried to access help by going to her family doctor and getting referrals to specialists, nothing was helping and her health was declining. She had no other options but to try the emergency room again. “It got to the point where I could not swallow water. I had to beg for help and explain I haven’t been able to get water down for days,” she recalls. This visit eventually led to recognizing that Heather’s esophagus had narrowed so much that barely anything could pass through into her stomach.

A temporary solution

After almost 10 years since the onset of her swallowing difficulties, Heather recently had her esophagus dilated, a procedure that involves stretching the esophagus. She described that “the relief was incredible” from the initial dilation. She could eat again to sustain herself and even began enjoying food once more. After a week, her esophagus narrowed again and she underwent another surgical dilation. As she explains, since her esophagus is damaged from her initial tumour surgery, she will be able to try one more dilation. As you can imagine, this is not the news anyone wants to hear – a solution that isn’t perfect nor permanent. Today, Heather continues to struggle as her dysphagia worsens, which affects both her ability to sustain herself, and enjoy the quality of life she used to.

Where to get help

compassion

When asked where she sought help, Heather replied, “Where haven’t I been?”. Throughout her path with dysphagia management, Heather has seen a multitude of specialists. She has been to three pain clinics, and completed a variety of diagnostic medical imaging and testing. Along the way, she couldn’t help but feel that someone should have put together all her symptoms or listened to her whole story. “I went through so many tests for so long, but they were not even looking at my esophagus.” Now Heather has a diagnosis, but many unanswered questions still remain, such as how she can live well with dysphagia when there is no long-term “fix”.

Shortcomings in healthcare

Even with universal access to healthcare, there are many points of improvement from a patient’s perspective. Heather noticed a disjointed and rushed healthcare workflow; from her point of view, specialists had such limited time to connect with their patients, and communicate with each other, that no one was able to synthesize her symptoms and history. She ultimately gave credit to a rheumatologist who persisted in listening to her, looking at the whole picture and doing the diagnostic work necessary. Today, Heather continues to strive towards merging her medical management with bettering her quality of life.

How can we make dysphagia management better?

busy healthcare

Heather wishes that the health care system could focus more on the quality of life she and other patients like her have. “I’d rather have an amazing next three years than have 10 more years the way I am now. I wouldn’t wish this on my worst enemy.”  She shared ideas on what supports could have been helpful to her.

  • Psychologist (or other mental health supports): The toll on mental health that chronic pain or disability can have, is massive. Heather had to give up eating, experienced social isolation and was unable to work due to her swallowing disorder. In Canada’s healthcare system, most psychology visits are not covered under provincial healthcare so it falls to the patient to pay privately or with extended health benefits through work. Heather noted the irony of this, stating, “If you’re not able to hold down a job due to a health issue, then you don’t have income or health care benefits. How can you see a psychologist?”. Having a psychologist available to work with her medical specialists would have been helpful.
  • Dietitians: Dietitians are an integral part of many dysphagia management teams, yet Heather was never connected to one as part of her care. Since she struggled to maintain her caloric intake, it also meant Heather could no longer participate in many of the physical activities she used to. It is possible that many patients are unaware that this healthcare professional could be helpful to them, let alone request to see one.
  • Exercise specialists: Many professionals will tell you that exercise is beneficial to both physical and mental health. The loss of physical exercise was devastating for Heather and she feels that being able to access an exercise specialist would have helped her regain some of her physical health. “I was in dance for many years, cheer leading in high school, and was always very active and fit. When you take care of yourself for so long and all of the sudden no one seems to care whether you’re in shape, it’s disappointing.”
  • Healthcare advocates and navigators: Heather acknowledges that she spent so long in a cycle of chronic pain and feeling unwell, that her ability to maintain accuracy in her story and timelines were likely impacted. Having assistance with navigating the system or understanding who can help in certain situations would have eased some of this difficulty.

Heather’s story is not an uncommon one. Dysphagia is a symptom of many causes, meaning that swallowing disorder diagnoses and management can vary. While the medical management of her swallowing disorder has been filled with uncertainty, Heather found hope in taking control of her quality of life. She continues to travel, seek out adventure, and experience the joys in life.  She hopes that by focusing on the things she can control, she can help others see that dysphagia is only one part of her. She will continue to navigate the rocky road of dysphagia management while still enjoying parts of the journey. 

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