Originally posted on Cystic Fibrosis News Today.
Second in a series. Read part one.
In my previous column, I described the lead-up to my diabetes diagnosis. Let’s resume where we left off: in an isolated room at CarolinaEast Medical Center’s emergency department (ED) in New Bern, North Carolina.
Upon my admission for an extremely high blood sugar level, I was given over 10 bags of IV fluid per the department’s sepsis protocol. I had my mother on the phone because I was overwhelmed by all of the doctors and information, and I required a second pair of ears. She clung to the word sepsis, and her post-traumatic stress went into overdrive.
Doctors confirmed that I wasn’t actually septic. Rather, my diabetes had gone untreated for so long that my high blood sugar level made me very dehydrated, causing my kidneys to go into acute failure. Therefore, I required the same amount of fluid as a sepsis patient, in addition to intravenous insulin.
Doctors circled in and out for the first six hours, adding to a list of diagnostic guesses.
“It came on so suddenly. I don’t think this will last. It might just be a gluten allergy.”
“I think your prednisone caught up to you.”
“It’s just a natural progression of you developing cystic fibrosis-related diabetes.”
I posted a video on social media asking for other patients’ diabetes stories to gain some insight. The influx of comments blew me away. Over 100 people shared their tips, tricks, and stories, which relieved my confusion and loneliness.
On day two of my ED admission, I was told I’d be transported to Duke University Hospital. But when I communicated with my transplant team there, they regretfully informed me that no beds were available, and I’d have to be seen as an outpatient.
With this new plan in place, I was discharged from the ED on a Friday evening after receiving a short but intense master class on diabetes. I was by no means stable, as my blood sugar level was still over 400 mg/dL with food. (The Mayo Clinic notes that a normal blood sugar level for adults is less than 140 mg/dL.) But the small kit of insulin and needles I was provided got me through the weekend.
Mom clicked into diagnosis mode and stocked the house with gluten-free and sugar-free products. She also hid all of the chocolate in the corner of the pantry. Due to a lack of guidance, my family joined me as I navigated a carb-free diet that weekend. As a family that loves fast-food and pasta, we were all hangry.
At 5 a.m. on Monday, my husband, Jared, and I headed to Duke and endured a long day of appointments. I got bloodwork, a pulmonary function test, and an X-ray, and we met with a new critical care doctor. The day ended with a free gluten-free meal at Subway for me and a large vanilla shake from Chick-fil-A for Jared.
Mom drove me to Duke the next few days, and we eliminated two broader concerns: cancer and post-transplant organ rejection. All of the results included good news, narrowing the scope of the cause of my diabetes.
Jared drove me to my final appointment on Friday. My arms and stomach were brightly colored and swollen, decorated with bruises and needle marks. My new endocrinologist introduced herself with a firm handshake and told me everything I needed to know.
I have CF-related diabetes. I still make insulin, but I will probably be on insulin forever, and this will be a long journey of experimentation.
Her words didn’t hit me at first. Knowing all of the information usually calms my nerves, but when Jared and I arrived home that night, I lost it. I teared up as I organized insulin into my already overflowing medication shelf. I set three more alarms on my phone labeled “insulin.” I stocked my backpack with more supplies, and I added the new insurance information to my journal. It was all too much.
My mom and Jared comforted me as I dropped to my knees in despair. “Let’s just take this one step at a time. We’ll get through it like always.”
Since then, things have improved. Focusing on high-protein, low-carb foods has improved my blood sugar level. The injections are already second nature, and while I’m moving a little slower than usual, I’m confident that I’m doing the right thing for my long-term health.
Diabetes was not on my list of New Year’s resolutions, but similar to my journey with cystic fibrosis, gastroparesis, postural orthostatic tachycardia syndrome, and transplant, I just have to find a way to make it work.
After all, as Mary Poppins sings, “In every job that must be done/ There is an element of fun/ … And every task you undertake/ Becomes a piece of cake.”
While a spoonful of sugar may not help my medication go down, perhaps a spoonful of sugar-free products will do the trick.