A Deadly Lack of Information


Diabetes didn’t always come easy to me. I’ve struggled with diabetes and acceptance for many years before I transformed my life with type 1, but before that transformation, I survived diabetic ketoacidosis (DKA) at least three times. I say “survived,” because DKA feels like death for a type 1. Think about a fish out of water for a long period of time, that’s basically what it feels like—fighting to stay alive.

Diabetic ketoacidosis is a diabetes complication and can be life-threatening if untreated. DKA can lead to a coma and eventually death, if the level of ketones in the body are high enough and left untreated. The cause: lack of insulin, which a person with type 1 diabetes needs for maintaining blood sugars and survival. Symptoms of DKA include consistent high blood sugars, high levels of ketones in urine, nausea and extreme thirst and dehydration.

My miseducation

Here’s one of my stories with DKA. I was home with my type 1 brother at the time when I fell to the floor and didn’t have the energy to get up. I was throwing up non-stop. I had nothing left in my body, I couldn’t even hold down water. I remember just lying there lifeless. My blood sugars were above 300 and eventually read “HIGH,” meaning my blood sugars were so incredibly high, my blood glucose meter couldn’t provide a reading. I remember even trying to gasp for air at certain points because my body kept wanting to vomit, but there was nothing left inside my system, my throat was as dry as the Sahara Desert. I thought this could be the end. Did I deserve this?

For some type 1s, this would have been a major sign of DKA, but having unstable and frequent high blood sugars, at that time in my life, these high blood sugars just seemed like another average day for me. I just thought maybe I had food poisoning. I didn’t suspect DKA because, well, I wasn’t educated on it. I was living in “diabetes burnout,” and this was the last straw.

My brother insisted on taking me to the hospital, but I fought it. I think I fought it because I was just so dead inside, I had no idea what I was even saying or really thinking or maybe it was a fear, the thought of lying in a hospital bed, the flashbacks to my diabetes diagnosis. I can’t really recall since I was in the hospital on a few occasions because of my lack of diabetes control. But I kept getting worse. I thought my body was getting insulin, but in actuality I wasn’t, come to find out because my pump site kinked. I had little diabetes education growing up in the 90s, and certainly did not even know what DKA was or what the symptoms were. I could have prevented this, but who knew? I certainly didn’t as a young adult.

The aftermath

After more time lapsed, my brother finally brought me to the hospital. I remember just waking up in a hospital bed with tubes coming from my arms hooked up to machines. I was placed in the ER, on an IV drip, to hydrate my body. I was also given anti-nausea medication and God knows what else. I had to keep the lights off because the light was affecting my vision, as high blood sugars have that effect. I had so many blankets wrapped around me because the IV drip was so cold entering my body and running through my veins. I had a throw up bucket in my bed and remember asking for water, but I was forbidden to eat or drink anything at that time for obvious reasons.

I just wish I knew then what I know now about type 1.

I wish I had resources to rely on. I wish I knew this could have been prevented. I wish someone told me high blood sugars can lead to problems. I wish someone told me to change my pump site or change my insulin vial, or better yet, seek emergency care instead of letting hours and hours pass me by as I suffer, trying to fight this vicious thing called DKA.

My A1c at that time was around 13%. Extremely high, like off charts high. After surviving that DKA experience, I knew I never wanted to experience that ever again. I knew a kinked site wasn’t entirely my fault, but I knew my life had to change with my diabetes management. High blood sugars shouldn’t be my “normal.” After that experience and so many others, I knew I wanted to change my lifestyle choices and poor health decisions. This was the birth of T1Dchick —the chick that would educate others on type 1, the chick that would advocate and spread awareness everyday moving forward. This is the chick who transformed her 13% A1c to a 5.6%, the chick people could relate to and one day look up to. I know that if I can survive the worst of type 1 diabetes and DKA, anyone can rise above it.

This piece is part of Beyond Type 1’s resources on DKA + managing ketones—find the complete collection of resources here.

WRITTEN BY Jillian Rippolone, POSTED 06/19/19, UPDATED 11/10/22

Jillian Rippolone is a person with type 1 diabetes, speaker and advocate, as well as a member of Beyond Type 1's Global Ambassador Council. You can find her on Instagram and Facebook: @T1Dchick.