Hey, Friends! As we continue our series of interviews with the 2019 DiabetesMine Patient Voices Contest winners, please welcome Nicholas Galloway from Ohio, diagnosed with type 1 diabetes in the emergency room as a teenager back in 2001.
Nick works as a diabetes educator (aka Diabetes Care and Education Specialist) in the prominent Cleveland Clinic, and is a self-described “diabetes tech nerd.” He also says his early ER experience shaped his views on medical professionals and how diabetes isn’t treated efficiently in urgent care facilities, leading into his career and efforts advocating for our community.
DM) Hi Nick! We always like to start by asking our interviewees to share their diabetes diagnosis story…
NG) Type 1 diabetes was introduced to me when I was 14 years old at the local ER on July 10, 2001. It was not apparent to the ER staff upon initial assessment as reported being tired, loss of appetite, nausea, stomach pains, and thirsty. My parents knew something was off, but I was great at hiding the fact that I was very sick. I eventually gave in and told my parents something was not right and I needed to see a doctor right away.
So you had been hiding the fact that you were ill?
Weeks prior to my diagnosis, I was losing weight quickly, but I also was trying to push myself working out for baseball and my parents contributed my weight loss to limited diet and high activity. I often hid the fact of not eating by getting up during meals with a full mouth of food and spitting it in the toilet, or the dogs would get an extra treat when nobody was looking.
Water was tricky as I often struggled getting enough water at practices and would hide extra water bottles in my sports bag when my thermos quickly emptied. My mouth felt like a sandpit that would never regain a sense of moisture. Holding water in my mouth kept the sandpaper feeling out of my mouth, but any moisture would quickly dissipate when I swallowed. Talking became very difficult and only achieved with a drink in hand. In addition to all the symptoms, I began to lose sleep because of getting up numerous times during the night to use the restroom. I was very concerned I had something physically wrong, but unjustifiably allowed myself to feel miserably sick just to avoid confronting insecurities being assessed by a doctor.
And were you initially misdiagnosed?
The ER staff really didn’t get much from my initial assessment due to the extent of my stubbornness as a teen and my fear that truly something was wrong. Of course I had to urinate while sitting in the ER, and the nurse wanted to take a sample for urinalysis. After returning the urine sample to the nurse, within minutes, I started to see a collection of doctors and nurses gather outside my room by the nurse’s station and overheard among the chatter “It turned black.” Soon after I heard my stepmother ask “It’s that bad?!” and she starting crying. The staff huddle was over and I feared my life was ending as they all began to surround my bed with urgency.
In totality, my ketones were very large, I lost about 20 pounds over 10 days, my vision changed to the point where I could see better without my glasses, my hemoglobin A1c was over 14%, and blood glucose level over 1200 mg/dL. What I gathered from the doctor’s hand-drawn pancreas on my bed sheet, was my Islets of Langerhans failed me, I was going to live, but I would have to manage a life-long disease. My life was not over, but it was a poignant realization that I am not Hulk, and what I consider the end of my childhood. Diabetes is a horrible disease, but at the same time, it has given my life purpose and opportunities to be thankful for.
Unfortunately, my story is not uncommon. As you know, diagnosis of type 1 diabetes is often found when presented in an emergency and life-threatening state of diabetic ketoacidosis (DKA).
Did that initial ER experience motivate you to work in healthcare yourself?
The ER experience was definitely a primer to my eventual career choice. However, the diabetes diagnosis and ongoing interactions with various healthcare providers molded my decision to become a nurse. Without the type 1 diabetes diagnosis as a teen, I am almost certain that I would have avoided any healthcare profession. The simple fact was that I had a huge needle phobia and I could not even observe any injection without cringing and becoming faint. The diagnosis of diabetes meant I had to confront my fear and the rest is history.
Have you had any other ER experiences as a patient?
All of my ER visits since my type 1 diagnosis have not been related to diabetes, but problems started when diabetes self-management was out of my hands and I almost lost my life due to negligence. Personally, I think there are a multitude of barriers to meet the needs of people with diabetes, but also anyone managing a chronic disease: caregiver burnout, healthcare budget management, the political system, and the current healthcare system all played a role with lack of care. Reflecting on my previous experiences, I am always trying to advocate and influence our current healthcare system, especially for people managing diabetes.
Can you tell us more about your job at Cleveland Clinic?
I work as a Diabetes Care and Education Specialist (DCES). I received my Associate Degree in Nursing from Lorain County Community College, Bachelor of Science in Nursing from Ohio University, and obtained my Certified Diabetes Educator credential.
I currently provide Diabetes Self-Management Education (DSME) in group or individual visits. In addition, I am a certified pump trainer on all current available insulin pumps and CGMs (continuous glucose monitors) (excluding Eversense). I also enjoy facilitating a professional series CGM group class (on Dexcom and Freestyle Libre) with a pharmacist to identify glycemic patterns, review current medication, activity, and dietary management. I consider myself a diabetes technology nerd and my second language is pump and CGM pattern management.
DCES is of course the new official name for diabetes educators. What do you think of that change?
I believe that DCES designation will help others know that we are not just providing diabetes education. In reality a DCES (formerly CDE) role has always been a multi-faceted one providing assessments, developing individual self-care plans, identifying barriers to health care, educating, developing support structures, working with individuals to create and implement smart goals, advocating, and so much more. As is true with many professions, the title did not do justice to the care provided, but specifically a CDE seemed too focused on one task. I am hoping the new DCES designation will be thought-provoking to healthcare professionals, insurance companies, and people with diabetes to acknowledge our expertise in diabetes care.
How does your own T1D play into how you work with patients?
Having type 1 diabetes does not qualify me as a DCES, but allows me to easily empathize with many aspects of diabetes management. I’m always okay with providers disclosing my diagnosis to their patients if they find it relevant or a selling point to seek my services. Some patients have sought a visit with me exclusively just knowing I have diabetes. Feedback from patients who worked with educators’ without diabetes was a sense of disconnection or lack of understanding when attempting to explain the physical and emotional burden of diabetes management.
Although it is not necessary to disclose my diabetes diagnosis, I believe it does help with support and keeping a positive energy when times are difficult. I especially enjoy telling my personal mishap stories of managing diabetes that can easily get a laugh—too many to admit. For those people who have not connected with the right educator, I encourage you to keep looking and do not give up. There are a lot of amazing DCES out there, with or without diabetes, who can have a huge impact with care. Being a DCES, I am thankful for the opportunity to connect and advocate for so many on a personal level managing diabetes. When I am at my best, the education visits focused on understanding the journey of an individual with diabetes and inserting new wisdom along the way.
What do you think are the biggest recent changes in diabetes care?
The biggest changes that I have witnessed have been the Affordable Care Act passed (in 2010) to prevent insurance companies denying coverage for pre-existing conditions, progression of automation with sensor-augmented pumps, improved performance of CGM systems, and the increased cost of insulin.
Speaking of high costs, have you ever had any access or affordability issues related to diabetes?
Yes. Going to college, working 35 hours a week part-time, working under the table, living on my own, and learning personal finance and budget management meant sacrificing my health to meet other basic needs. Diabetes was another full-time job I could not always accomplish as a young adult.
What gets you excited now as to diabetes innovations?
Everything! I hope as new innovations hit the market, they will reduce the burden of managing diabetes and improve health outcomes. I sometimes joke to my peers that my next job will be working at my favorite coffee shop after witnessing the vast amounts of diabetes research and technology being developed over the past decade.
Why did you decide to apply for the DiabetesMine Patient Voices Contest?
I want to be a leading advocate for people managing diabetes and share my personal and professional insights, ideas, concerns, and stories to hopefully assist the diabetes community. I consider myself a team player, open to new ideas, and an active learner. But I often internalized my views, frustrations, and concerns with today’s current systems and therapies. Applying for this contest was a great opportunity to share my views and ideas to hopefully represent and contribute back to this amazing diabetes community.
DiabetesMine has done an amazing job bringing a synergistic approach to reach communities of interest for the benefit of others. With gratitude and respect, I thank you for being advocates and including the voices of those managing diabetes. I hope to answer any key stakeholders’ questions and promote the needs of increased access to diabetes education across the spectrum of care. Also, I enjoy sharing ideas, views, or troubleshooting problems with anything including diabetes technology.
Gotcha. If you could give critical feedback to industry players, what would you tell them?
To healthcare industry/providers: Think of every person as a close family member or friend. Everybody has a unique story and history that explains the “why” and “how” in regards to self-care practices and behaviors. Healthcare will never be perfect, but it’s our responsibility to do our best with allotted time and resources to make a meaningful difference in people’s lives. Never pigeonhole a person’s poor health outcomes or self-care practices as not caring about themselves.
To technology industry: Less is more if safety is not sacrificed. Diabetes burnout, practicality, alarm fatigue, diabetes distress, personal self-image, ease of use (including options for people hard of hearing and legally blind), affordability, and accessibility should be on the minds of anyone developing/distributing diabetes technology.
Thank you, Nick! We can’t wait to meet you at our Fall 2019 DiabetesMine University program in San Francisco.