Mayo Clinic Update
Hello everyone! Here’s an update about my time so far at Mayo Clinic in Rochester, Minnesota…
We had about nineteen hours of driving, including stops, over two days. February weather is unpredictable across the northern part of the US, so we were prepared for anything. However, both days were clear and sunny, the roads completely dry with just a bit of wind.
I was worried about Covid risks with bathroom and meal breaks. We brought a cooler with food, and we sought out rest areas instead of gas stations. Each time we stopped, there were either no people around or they were just leaving. Every rest area but one had a family bathroom, a separate, single-stall room, that was perfect for us to use, especially since I needed Shawn’s help.
It was so smooth, it’s almost like Someone cleared the way.
Appointments & Testing:
My week has been packed with appointments! This has meant early, early mornings to arrive on time, and late returns back to the hotel. That said, the staff at Mayo made it as smooth as possible. Here are some highlights:
- My neurologist considered and approved my request to cancel an EMG – what I saw as an unnecessary test – and one I’d been dreading. I’ve had two in the past, and they are painful. Whew!
- Every technician found a way to work around my physical limitations and my wheelchair. From x-rays to an ECG to drop-off times for a take-home test, my needs were made a top priority. And when Shawn wasn’t able to be there one day, Mayo staff (and a couple of kind strangers) stepped in to help.
- The health care professionals I consulted were eager to hear my questions and concerns. They often let me lead the discussion and took their time ensuring we had covered everything. I wrote some details and answers in my journal, but they would often say, “I’ll write this in my visit notes for you to access,” so it saved me scribbling furiously.
On Monday, I’ll have a procedure done to place a feeding tube. It will be a complex case because of my weakened lung function, so the doctors will have to make a few on-the-spot decisions that morning. Once the tube is placed, I’ll receive after-care education and support from the HEN (Home Enteral Nutrition) Team. I’ll meet with a pulmonologist and a cardiologist and do some follow up lab work at the end of the week. Tentatively, we can start driving home on Saturday.
Body, Mind, Soul:
Many of you have checked in to ask how I’m doing. Here’s the answer(s).
- I’m tired. Sleeping away from home is difficult for many reasons, plus I’ve had to get up super early.
- I’m eager to advocate for myself. When I’ve had time, I’ve written some advanced notes about my concerns. I don’t hesitate to ask direct questions, and the doctors have responded well
- I’m worried at times, yet I know within my core that this is exactly where I need to be, and that gives me peace.
- I’m comforted and strengthened by family and friends. I especially draw from a book of blessings, an envelope of prayer cards, and a reminder on a postcard from a friend that I “don’t have to be brave all the time.”
Gratitude & Beauty:
There are so many things for which I am grateful each day! And I’ve found places of beauty, too. Here are a few highlights…
- I’m grateful that Mayo Clinic requires masks for everyone, ensuring I’m as safe as I can be from Covid exposure.
- I give thanks constantly for Shawn, who, among countless other caring tasks, unloads/loads my wheelchair on a custom platform attached to the hitch of the pickup. It takes about ten minutes as other cars flow around our truck in the loading zone.
- I’m grateful for my power wheelchair to zip me around the long hallways and myriad floors of Mayo Clinic. It’s also great that I can use it at the hotel in our wheelchair accessible room (which also has a full kitchen so we don’t have to go out to eat!).
- I’m grateful that we could bring our two dogs, that the hotels have allowed this, and for the joy and smiles that come with loving our furry children.
- I mentioned our early mornings and how they’ve affected me. Two days ago, we were headed to the Clinic just at the right time to see the sunrise. It was beautiful! God seemed to know I needed a lift.
- I arrived for an appointment half an hour early, so I looked for a quiet place to wait. I found a window, etched with trees, where I could sit in the sun shining in from a central skylight.
- One of the clearest memories from my very first visit to Mayo Clinic in 2003, is the sound of a piano near the atrium. I learned later that it was there for anyone to play, and I marveled at the skilled musician. This time, I was able to stop and listen as a woman played, without sheet music, and a child in a wheelchair danced with glee. I was in awe at her talent and her obvious love for the child as she finished one score and began another. It was beautiful!
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