Adapted in TC: A Love Letter to a Strong Woman, Friend
She died Aug. 16, 2017 from a form of amyloidosis, which affected her major organs. Pat was a wife, mother, sister, grandmother, retired scientist and businesswoman and friend to many. She loved to cook, garden and volunteer in her community. Pat was the vice-chair of the Traverse City Human Rights Commission. I met her in 2015 when I joined the commission.
Five years ago, Pat was diagnosed with amyloidosis; which is caused by the buildup of an abnormal protein called amyloid in the bone marrow. Amyloidosis is both incurable and treatable with medications, dialysis and transplants. With support from her loving husband, Bill, Pat utilized home dialysis.
In 2016, I asked Pat, a gifted speaker, to represent invisible disabilities on the HRC’s Educational Forum on physical disabilities. Initially, she said “I’m not sure I have anything to offer. I’m fortunate to have lots of support and resources others don’t. I’m a pretty private person.”
“That’s exactly why I want you to do it,” I said. “People need to hear about your extensive engagement in your own care; the research, training and troubleshooting you’ve done. You’ve advanced what we know about amyloidosis.”
Eventually, she agreed to speak.
After the forum, people asked her more about her fatigue, nighttime dialysis, infections, check-ups for kidney health, finding a nephrologist, how she traveled and psychological factors. Folks shared their wisdom, too. One man, at risk for kidney disease, said he’d learned to use the free, automatic blood pressure cuff at the grocery store. Every week, he checked his blood pressure and recorded the findings in his cellphone.
Recently, I consulted a medical expert about kidney transplants in our area and what’s helpful for people going through dialysis.
“In this area, 6 percent of patients 70 years of age or younger are transplanted, which is higher than expected from the Centers for Medicare & Medicaid Services.
The Munson Center has 26 percent of the dialysis population on a transplant waiting list, compared to 21% nationally,” said Georgia Wilson, MSN-Ed, RN, CNN, Director of Dialysis Services, Munson Healthcare.
Georgia added “offer travel assistance to dialysis if needed, physician office appointments, etc. Offer to spend time with the person and help them attend activities that increase the quality of their life. Perhaps outside activities such as attending church, bingo or taking a drive. The National Kidney Foundation of Michigan also has helpful information for the patient, caregiver and health care professional.
This year, Pat was hospitalized several times. One evening, I visited her in her cardiac rehab room. I was there a long time; she never let go of my hand. In the intimacy of her softly lit space, she said, “I think my changing health is meant to teach me how to be more compassionate, knowledgeable and helpful to others.”
In her practicality, she asked me how she could get her hair done sitting in a wheelchair and ways to navigate her multi-story home. She discussed managing her chronic illness, and the improbability of great improvement. We laughed, cried and looked forward.
Some people add so generously to our quality of life. Patricia Nugent was one of those people.
Susan Odgers is a 30-year resident of Traverse City and has been using a wheelchair for 41 years. She is a faculty member of Northwestern Michigan College and Grand Valley State University. She can be reached by contacting the Record-Eagle.