Is there a donor with Type O blood?
John Nelson looked and felt like the picture of health in October 2017, but some routine bloodwork told him otherwise.
“My kidneys were operating at 6 percent,” he said. “I was in stage five kidney failure.”
When he got the news, Nelson had been living in Milton, in the Paynter’s Mill community, for about 10 years. He, with his wife and their now 19-year-old son moved there from Annapolis. He’d worked as a division manager for Hewlett Packard for more than 30 years, and still does. His claim to fame is his Halloween display, an elaborate setup of ghoulish props he makes himself to scare and delight trick or treaters in the neighborhood.
But that’s all on hold for now.
From dog walking to dialysis
When he got the fateful call in October, the 51-year-old was out walking his dog, Petey. He was told to go to the emergency room immediately, even though he felt fine.
“He had just gotten up on the roof and was getting [Halloween] props out and had made a fence,” his wife Andrea said. “He was going to the gym. He never drank, never smoked. He was very active.”
A catheter was placed in Nelson’s neck and dialysis began immediately. He’s been going for dialysis in Rehoboth three days a week ever since, for 4.5-hour sessions each time.
“The catheter has two ports, one goes into my carotid artery and other goes into my heart,” Nelson said. “They hook me up to dialyzer with a filter on it and it cycles my blood for 4.5 hours continuously, cleaning it like a pool filter.”
The dialyzer cleans toxins out of the blood that his failing kidneys can’t, but at the same time, it removes vital nutrients.
“There’s lots of pain that comes with it. Your whole body feels like you’ve been run over by a steam roller,” Nelson said. “When you’re done, you’re basically malnourished. After dialysis, the pain comes and I suffer from around 6 at night to 3 a.m. I can’t sleep or get comfortable.”
Oftentimes, Nelson wakes up having trouble breathing. After several trips to the hospital, they found it was due to fluid buildup, another effect of kidney failure and dialysis.
“Dialysis continually tears your body down. It greatly stresses your organs, and the longer you’re on it the more stress they go through,” Andrea said. “You have to get off dialysis as soon as you can. It’s a Band-Aid, basically. It works – until it doesn’t.”
Many people on dialysis eventually die not from kidney failure, but from a stroke or heart attack due to strain on the body. The only alternative is a transplant.
Finding ‘O’ donor
Nelson has Type O blood, which is commonly referred to as the “universal” blood type. It’s compatible with all other blood types. About 7 percent of the population has O-negative blood, and about 38 percent has O-positive blood.
“So people with Type A or B blood, they can take a Type O kidney, too” he said. “But I can only take Type O.”
Nelson’s chances of getting a kidney from the national organ donor registry in time are slim. According to the National Kidney Foundation, wait times for a kidney are usually three to five years, but Nelson’s doctor told him it could be upwards of eight. More than 100,000 people are waiting for a kidney in the U.S. and, on average, more than 3,000 more are added monthly.
“People don’t realize how bad this disease is. It’s everywhere,” Nelson said.
Type O blood isn’t the only prerequisite. Donors have to go through a series of tests to determine if the donor will still be healthy later in life with just one kidney. Nelson’s hopes were up when testing seemed to be going well for his brother, until doctors found he was prediabetic and determined the surgery would be too risky.
His wife and another brother also went through testing but were not matches. That’s when they decided to go public.
“We got banners put up on Route 1, made a Facebook page, got car magnets,” Andrea said. “We’ve handed out thousands of flyers.”
Across Cave Neck Road from Paynter’s Mill, where the Nelsons live, in Milton, is Smokin D’z Real Pit BBQ. Business owners Katherine and Damian Birl have been especially helpful since the Nelsons went public.
“Everybody that buys a piece of chicken gets a picture of John,” Andrea said. “They’ve just been incredible.”
People potentially interested in donating must find out if they’re a match. They can call 443-223-7494 or email firstname.lastname@example.org. The first step is to fill out a simple form for the University of Pennsylvania, which does the testing. The testing is confidential. The Nelsons wouldn’t be aware of the status until the individual has both been determined to be a positive match and made their final decision to donate.
The testing is also completely paid for by Nelson’s insurance.
“We’ll find a donor,” Andrea said. “I know we’ll find a donor.”
For now, Nelson and his family will continue to focus on publicizing his plight and Nelson will continue with dialysis.
“I just want to live life again,” Nelson said. “Because right now, life has pretty much stopped.”