You could have kidney disease right now and not even know it.
Of the 26 million adults living with kidney disease, nine of 10 actually don’t know they have it.
Just ask Nedene Bearss. Nearly a decade ago, the Jenison woman learned of her condition. With a take-it-in-stride outlook, she said, “There is no point in dwelling on it, you must simply take care of your health the best that you can.”
The facts about kidney disease are actually a little staggering. In short, Chronic Kidney Disease is serious business, as Bearss would learn along the way.
What causes kidney disease?
There are many risks and conditions that can negatively affect how well the kidneys work, such as diabetes and high blood pressure. These risk factors can lead to chronic kidney disease.
Congenital conditions such as small kidneys, polycystic disease or even your ethnicity also contribute to Chronic Kidney Disease. Every factor that reduces kidney function increases the risk of progressing through the five stages of the disease until kidney failure.
Even more concerning is that most people who have kidney disease will be in Stage 3 by the time it’s discovered.
Don’t let this be you. Ask your doctor about how to monitor kidney health if you have any risk factors.
As is the case with all kidney patients, dialysis became Bearss’ new part-time job, three days a week, for a good half day each time.
“I just accepted this as my new normal,” she said. “I didn’t have a choice. But I was going to learn what I needed to do and make the best of it.”
Dialysis mechanically cleans the blood when the kidneys can’t. The blood is cycled out of the body, passes through the machine’s filters and the cleaned blood flows back in.
Bearss quickly learned that accessing arteries and veins for each session can become a challenge. That’s when she first heard about the AV fistula procedure.
Hooking the hose to the faucet
Spectrum Health vascular surgeon Peter Wong, MD, specializes in AV fistula surgery.
He explained, “With dialysis, you must access the blood at every appointment. Think of the vein like a garden hose. By creating an AV fistula, I’m hooking that hose up to the faucet, which is the artery.”
He continued, “Patients often come to me with a chest port. With a port, the IV tube is close to the heart. This adds risk. Sure, there are no needle pokes, but there is also no swimming, no showers. And the port or catheter sites can easily get infected, which means a hospital stay. That’s why the AV fistula has been considered the gold standard of care for dialysis since 1966. It offers a safer, long-term dialysis management solution.”
At the start of her health care journey, Bearss knew nothing about vascular specialists, Dr. Wong, or really much else related to her condition.
But then she heard about the AV fistula and she booked an appointment with a general surgeon.
“He was the doctor, I was the patient, I needed to have dialysis, this would help, that was it,” Bearss said. “I liked the idea that by putting the fistula on my upper arm, my sleeves would make everything look normal, I could keep it out of sight and out of mind between appointments. ”
Unfortunately, the general surgeon did not have the vascular expertise needed for this procedure.
While Bearss knew that the fistula would look like a cord beneath the surface of her skin, she was not prepared for what was to come.
“Very quickly, it became a big, bumpy mess,” she said. “It was nearly an inch and a half wide.”
Worse, she began experiencing severe pain in her hand. Her nails turned completely white, her hand was cold and the general surgeon repeatedly assured her there was nothing wrong. After he retired, Bearss braced herself for the inevitable.
“I knew I was going to lose my hand,” she said. “But until I had to, I lived with the pain the best I could.”
Can this hand be saved?
Fortunately, Bearss’ future was about to change for the better.
“My daughter was hired to work in a medical office. Neither of us gave much thought to the fact that it was a group of vascular specialists,” Bearss said. “My daughter, Kari, had only been working there a few weeks when she came to me with a big smile and said, ‘Mom, we’re taking you to see Dr. Wong.’”
Dr. Wong has dedicated his practice to AV fistula surgeries after recognizing that many general surgeons performed the procedure without specific vascular training. This was what happened in Bearss’ case.
“No one seemed to dedicate their surgical practice just for these patients who go through so much,” he said. “I asked what I could do to help and realized that this was something I could offer. To reduce some of their complications, if I could make it even a bit easier for them, then this was what I wanted to do. Like I said, no one wants this surgery, but I want them to be glad they came to me.”
Bearss was open to anything by the time she appeared in his office.
She said, “I met Dr. Wong and, as soon as he saw my fistula, I knew that we had been right all along: It was a mess. Dr. Wong was the most wonderful man. He was so supportive and enthusiastic. When he told us, ‘I can fix that,” we couldn’t have been happier. We knew it was meant to be. I still didn’t know if he could save my hand, but I was hopeful.”
Dr. Wong performed an intricate revision of Bearss’ AV fistula. Not only was the corrected vessel less than half its original size, blood immediately began pumping throughout her hand.
When Bearss went home, for the first time in two years, she was pain free.
“It is all new to you,” she said. “I had no idea how important it was to find a vascular surgeon, a specialist. It’s my advice to everyone: you must have a vascular specialist. Dr. Wong saved my hand. My life is so much better, and I owe it all to him. He is our hero.”
I’m so proud of Mom and how she has handled this disease and it’s treatments. Dr. Wong is our hero in the work he has done creating and maintaining a viable fistula and saving her hand but she is my hero in the way she faced this battle head on and in the way she lives her life in spite of it!
All the best to you, Nedene, and your fellow kidney disease fighters. It was so great of you to be willing to share your story, through all the struggles you were facing. You and Kari will always be one of my cherished story memories. And Dr. Wong, wow. What a truly caring, wonderful specialist! His responsiveness and passion to help made me wish every kidney patient in the world could see him. Do we have a cloning department? 🙂
This news was new to me. I am so thankful to you Kari for getting this information to all of us. But I am so thankful that Dene has received this wonderful surgery. She deserves all the good that God can give. I know we all agree that God can work in mysterious ways but also through those who love and serve him. Kari, you and your family are such wonderful Christians and I can do nothing but give God all the praise, honor and glory for letting him use you, Also for Dene who lives on faith every day. I am blessed to call you family.
So great Nedene that you are doing good. He sounds like a very special Dr. I believe in the great care we receive at Spectrum. Thanks for sharing your journey.