Brandon Mouw from Southern California was diagnosed with Type 1 Juvenile Diabetes at age 3, stage 3 kidney disease and Brittle Hypoglycemic Unaware Diabetes age 29. He was a well-controlled diabetic till age 29 until he had kidney stones removed. Suddenly Brandon became an uncontrollable diabetic that made his blood sugars too low to function. After dying twice, he was told he needed a pancreas-only transplant to save his life.
How long did it take to get a diagnosis? Did you have any misdiagnoses?
It took over a year to get diagnosed as a brittle diabetic after doctoring and trying to find out what was causing me to pass out and have such bad hypoglycemia. After the diagnosis, it was trying every different treatment the doctors could throw at me—to no avail. Things like eat every 15 minutes, taking different insulins, diabetic alert dog, diet changes, remaining “stress free,” you name it and they had me try it. Finally, a new doctor that I had an appointment with while doctor shopping knew exactly what I needed and that was a pancreas-only transplant. It was the only way to stop my body from shutting down; and, my only chance at living past two years.
No misdiagnoses, but suggestions and tests for every different autoimmune disease they could throw at me. It was assumed I had gastroparesis due to the diabetes complications from my kidney stone issue that would not allow my body to break down food correctly.
What is your main struggle with your illness?
Staying well with a compromised immune system: Maintaining health and wellness
What is a common misconception related to your illness?
I did it to myself from not taking care of myself, or that I can undue what is wrong with an eating and exercise regime.
What helps you? What do you do to take care of yourself?
Knowing I am alive for a reason because I was told I should be dead too many times. Gives me a spark for life and makes me enjoy every moment I am given. I care for myself by doing what makes me happy, enjoying the outdoors, exercising, and doing all necessary things to keep my transplanted pancreas happy.
How is your mental health affected and how do you manage that?
Mentally, I am in the best place I’ve ever been because I learned that the impossible can be possible when I was my own advocate, doctor shopped, and did all I possibly could to find out what was wrong.
When I struggle, and it happens, I think about the good times and look forward to the plans I have in the future that I will enjoy. Breaking it down further, I know the sun will rise in the morning and my goals is to hang on for dear life till the next day arrives with something new.
What is a scary/difficult moment in your life and what was the best? (In regards to your condition)
Most scary was having to be vulnerable and ask for help when I was no longer capable of taking care of myself. Best moment in my life was when I woke up from a successful surgery and the transplant was working. On the other hand, It also was being vulnerable because it taught me that there are good people in the world, changed my whole life perspective, and allowed me to keep on kickin’ long enough to live. I would not be alive if it wasn’t for the help of others and an organ donor. Please register to be an organ donor.
Give us is a fun and interesting blurb about you (not related to your illness):
I grew up on a chicken ranch, have a golden doodle, fell off the cliff at Lincoln Falls in Yosemite picking up a piece of trash, am a big fan of diet coke, prefer the ocean over the mountains, and love adventure.
What advice do you have for others who are recently diagnosed?
You are not alone. There is a community of people with chronic illness that are there to support, relate, and motivate you.
What would you like others to know about your illness? (to family, friends, coworkers of someone with your condition)
I am the happiest I’ve ever been. I’m capable of anything. It has allowed me the opportunity to find out what I value most in life. And, I am so thankful for people who have helped me and followed me on this journey.
What is your social media handle/website/links if you want to make yourself available for others to reach out?