Mayo turned out to be just what we needed to settle on a treatment plan for the near-term. The trip was a whirlwind, full of appointments and tests, but also playing in the snow, our first hotel experience with the boys, and making memories.
In terms of testing, I was very pleased with the thorough approach each set of doctors took to dig deep into the outstanding questions. I'll admit, though - I felt like a rag doll by the end of the trip, having been poked and prodded seemingly 24/7. The turnaround time of results was phenomenal. If I had done even one of these tests through a local doctor, it would have taken days or weeks to find out the results. I would have had to schedule childcare and factor in drive time and wait time. At Mayo, with my parents there take care of the boys, the testing was so much smoother. For the blood tests, I received results in my online portal within 4 hours. The bigger tests took a day or two so the doctors could review and interpret the results. It was amazing! Here are some of the tests they performed:
- bone density
- x-rays of spine and hips
- abdominal ultrasound
- CT of small bowel
- MRI of liver
- 10 vials of blood
- 48 hours of fasting
Thankfully, we were able to return home after 6 days of testing and take the consultations virtually from the comfort of home. We really hoped we'd be able to leave sooner than expected, and that is just what happened.
I am SO thankful to my husband, who supports me in every step of this medical journey and took time off from work to be with me at the appointments and be with the boys while I underwent testing. We could not have managed this trip without my parents who made the (LONG) drive to Rochester, MN to help take care of the boys whenever Jacob and I went to appointments. Our time there seemed more like a vacation to the boys than a medical trip. They enjoyed building a snowman, playing with trucks outside at the biggest sandbox I've seen full of communal trucks, exploring a children's museum at the Apache Mall, and running around the Rochester Athletic Center playing miniature golf, air hockey, building towers, jumping on trampolines, and climbing towers. These activities truly made the trip possible with the boys!
The tests were draining, but the appointments were so informative, and the team approach from the doctors was critical to ensuring my treatment plan considers all necessary components. My three main issues are GI distress, high liver numbers, and osteoporosis. By seeing a GI doctor, a hepatologist, and an endocrinologist at Mayo, they coordinated care recommendations. For example, due to my low bone mineral density, I should not take Prednisone (ideally ever, but realistically as short as possible until treatment begins). The hepatologist was able to communicate the considerations for my liver with the GI doctor and made recommendations how we will monitor over the next year. He also advised against some tests GI my doctor here in TX wanted to perform due to their invasive nature and potential side effects. I'm so glad put a pause on treatment until after our trip to Mayo!
The ultimate diagnosis from Mayo is ulcerative pancolitis, which involves inflammation throughout the entire large intestine. There are many components, but that is the gist. It is an autoimmune disease, so any treatment path I take will involve immuno suppressants, which will lower my immunity. It will be very important for me to take care and avoid sickness. While it is scary to think about in the season of COVID, God is not a God of fear, and we will pray for protection.
More to come on this journey, but we appreciate your prayers as we make decisions each step of the way and trust for God to provide wisdom!
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