Mother goes the extra mile to care for and raise funds for her son who is living with kidney disease
As the scorching heat of a Florida summer started creeping in this May, you could find Janet Faggella Howard out walking. She braved the heat because she was participating in AKF's 37 Mile Challenge, a fundraiser that challenges participants to walk or run 37 miles to honor and raise money for the 37 million Americans living with kidney disease.
"You had a month to do it, but I made a pact with myself that I was going to do it in nine days," explained Janet. "It's a little crazy, but it's hot down here in Florida – even in May!"
Janet's "crazy" efforts paid off as she met and surpassed her fundraising goal of $250, raising a total of $1,200. "I heard from people that I have not heard from in many, many years and I raised more than I expected to. [But] you don't know what their family situation is like," said Janet, mentioning that many people unexpectedly had a connection to kidney disease she did not know about.
Janet's connection to kidney disease is personal — her son Bryan is one of the millions of Americans living with kidney disease. He was first diagnosed in 2008 and started receiving dialysis treatments in December 2013. Initially, Bryan received home dialysis treatments, with help from his parents.
"We went to the classes and learned how to do everything," said Janet. "So, we were here for him for support and to help whenever the crazy alarms went off in the middle of the night."
"Peritoneal dialysis for a while worked really well," said Bryan. "I thought doing it at night was great because I could still use the day to do whatever I wanted. But that started failing. It just wasn't working after about five years."
Bryan has since switch to in-center hemodialysis, which has provided both some benefits and some challenges. Compared to his peritoneal treatments, Bryan's in-center treatments have helped him better regulate his bloodwork, he said, including managing his anemia. However, Bryan can no longer do his treatments overnight and must go to the center three times a week.
"Now that he's on dialysis three days a week, at least one of us has to be available to take him and pick him up," explained Janet. "He doesn't like to be left alone overnight, in case something should happen. So, [his kidney disease] has had a great impact on our lives. But you do what you have to do."
Part of the challenge for Bryan and Janet is that Bryan is not a "textbook case." He has been living with type-1 diabetes since he was four years old. The diabetes is not only the cause of his kidney disease, but it has also caused high blood pressure, anemia, gastroparesis and diabetic retinopathy. The last of which required eye surgery, impairing Bryan's vision and ultimately leading to his kidney disease diagnosis as his pre-surgery bloodwork revealed the damage to his kidneys.
"I'm only 48, so when a lot of this was going down, I was in my 30s," said Bryan. "I still [felt] young, stupid and invincible. So, I wasn't listening to my body. Listen to your body. If you think something's wrong, talk to your doctor."
Despite the challenges Bryan's chronic illnesses present, his is still an optimistic person. "Every year, I go through an evaluation of how I'm doing mentally, and I'll be quite honest, with all my problems, I don't let it get to me. It just rolls off my back."
Both Bryan and Janet agree that an important key to this positive outlook is having a good support system. "You definitely need a good support system," said Bryan. "And with my parents, I have one of the best. I really do. I may not show my appreciation, but God, I'm glad they're here."
When Janet heard about the 37 mile challenge through AKF's Facebook page, she knew she wanted to participate because of AKF's mission and programs, particularly its disaster relief program when hurricanes swept through Florida. "I like that the American Kidney Fund puts 97 cents of every dollar towards their patients and that just gave me the extra boost to I think I'm going to do this," explained Janet.
She plans to participate in the next 37 Mile Challenge starting on Oct. 1, "so the funds are there to help other people. Right now, we do what we can for Bryan, but I know there are families out there that need the help."
To join the 37 Mile Challenge, you can register here.