A Spoonful of Sugar: My Diabetes Diagnosis, Part 2

Nicole Kohr avatar

by Nicole Kohr |

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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.

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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.


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Mary E Shreck avatar

Mary E Shreck

As always Supergirl , you and your mom, drs , Jared and God along with Lucy and Roxy got this. Always lots of hugs and prayers. You've overcome so many obstacles in your life and you will do the dang diabetes one too. Love you and the family!

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Paul & Debbie avatar

Paul & Debbie

Wow, another challenge to add to your elaborate collection, Nicole! It's becoming like the st. Petersburg Hermitage of Afflictions. If you were a museum, the entrance fee would be prohibitive. Perhaps there is an opportunity in this?

I just looked at all your YouTube and couldn't stop laughing for a while - thanks. You are very talented and this is the art of living personified.
Hope to give you a little chuckle with a poem I wrote some time ago for the forum. It was an answer to a question from Bailey Vincent, who proposed that our personality shows in the way we are coughing., which really got me going.
You might have read it at that time, but perhaps not, because the forum is a very fleeting medium. So I repeat it here for you:

The Art of Coughing

I rumble with affection
It’s truly like an art
With natural perfection
A few minutes apart.

DaVinci, Rembrandt, Shakespeare:
They are like amateurs
Compared to what I do here
A sad bunch of messieurs.

“To breathe or not to breatha”
We know not of that phrase
And the Mona Sneeza
Has never come our ways.

I miss The Magic Flume
Did Mozart call it off?
And Rembrandt, I presume
‘s forgotten The Nightcough.

While I was writing this
I made a lot of art
I wheeze, I bark, I hiss
And do it all by heart.

From now I will preserve
All these sounds I do
And when they know my Oeuvre
I will be famous too!

Unfortunately I had to say goodbye to this way of personal expression, for Kaftrio has killed most of my coughing talents in one blow. It's not worth mentioning what I produce lately in this area of Art, so no more poems will appear about this. Which makes this one very precious.

Hope you liked,
Paul

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