My health journey began a dozen years ago, with a spiral that left me feeling I was slowly dying despite the involvement of 20 doctors across two of my hometown medical centers.
My ever-growing list of symptoms included constant weight gain, body aches and pains, unexplained profuse sweating, an enlarged and painful liver, swollen lymph glands, brain fog, memory loss, and increasing body-wide edema. I was diagnosed with acromegaly and underwent pituitary brain tumor surgery and gall bladder removal surgery.
Two years ago, my odyssey led to an answer: I was born with the inability to properly metabolize many medications due to mutated genes in my Cytochrome P450 liver enzyme system. It was all the medications, built up in my system for twelve years, that were making me so incredibly sick! I never had acromegaly; I never needed brain surgery, which resulted in brain damage; I never should have had my gall bladder removed–the medication that was prescribed was never necessary and harmed it.
I only needed to stop taking the medications that were metabolized by my polymorphic enzymes. By doing that my profuse sweating completely disappeared, and within the first six months I lost 50 pounds with no diet or activity changes. In the past two years, I have gone from a size 16 to a size 2. Edema slowly left my body and swelling in the lymph nodes, under my chin, and in my armpits, subsided. It took almost two years, but my liver enlargement slowly dissipated and pain is now very infrequent. My 2-plus page list of symptoms continues to slowly but surely dwindle.
In 2004, when my illness symptoms began, my daughters were two and three years old; we didn’t discover what was making me ill until they were fourteen and fifteen years old. I feel guilty that my children aren’t the people they could have been because I was never able to be the parent I wanted to be during their formative years.
I remain stunned that so many medical professionals are simply unaware of the cytochrome P450 liver enzyme system and how it works. I lost faith in doctors–but I am slowly learning to trust again.
With that said, this journey has been incredibly sweet. How?
I’m surprised I am still alive–and incredibly grateful to have recovered as much as I have. Cytochrome P450 drug metabolism is an under-acknowledged issue, about which I hope that more medical professionals will learn. Patients should never become ill because of their health care.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Kelly DuBois is a technical writer from Rochester, NY. She volunteers on Mayo Clinic Connect, and is also a volunteer advisor for Mayo Clinic National Wellness. She enjoys mentoring and helping to manage Greater Rochester Robotics FIRST® Robotics Competition Team 340 out of Churchville-Chili Senior High School. She continues to participate in several medical research studies at Mayo Clinic and also at her hometown medical center.