Adjusting to life with PKD

One in 500. Those are the odds of having one of the most common life-threatening genetic diseases—polycystic kidney disease (PKD). Tim Boyle of Farwell has it. He and his wife, Ellen, live just north of Farwell, halfway between Ellen’s job at Healthland in Glenwood and Tim’s job at Lakeland Manufacturing in Alexandria. Tim grew up in Glenwood and graduated from Glenwood’s Central High School in 1973. He spent the first 20 years of his career working in the metro area, but followed his heart back home “in a New York minute” when an opportunity opened up in the area in 1999. You can’t “catch” PKD. It’s a genetic disorder in which clusters of cysts develop primarily within the kidneys. Cysts are noncancerous, round sacs containing water-like fluid. As the cysts grow, they gradually cause the kidneys to lose their ability to eliminate wastes from the blood and maintain the body’s balance of fluids and chemicals. Though the disease varies in its severity, nearly half of those with the disease have kidney failure by age 60. There is currently no treatment or cure for PKD. Tim was diagnosed with PKD in the spring of 2004. Though he and his doctor had been watching Tim’s rising creatinine levels, a measure of kidney function, since 2000, the levels hadn’t been a cause for concern. That changed with a routine insurance physical. “Late in 2003, my employer was going to take out additional life insurance for me; I wasn’t able to pass the insurance physical because my creatinine [level] was too high,” said Tim. Because the numbers were outside the normal range, the insurance company couldn’t cover him for the additional life insurance and he was told he should have it checked out further. What brought the situation home to Tim wasn’t the sight of numbers on a page, but the reality of being turned down for more insurance coverage. “It was more an event that occurred that now I’m not normal anymore—because I was refused for this thing,” said Tim. “I went in. They did an ultrasound and a whole battery of tests. It was determined that I had polycyctic kidney disease—PKD.” Since 2004, Tim’s numbers have been tracked every three to six months, along with blood work every eight to 12 weeks, allowing his doctors to chart the progress of the disease. “My function drops about 2 percent a year,” said Tim. “I’m at 11 percent now. In six months I’ll be at 10, a year from now I’ll be at 9 . . . it’s a pretty straight line.” But it’s one thing to watch a graph line take a slow but steady slide, and another to experience what that line represents in real life. For Tim, a relentlessly positive guy, it means a constant and objective re-evaluation of what he can and can’t do. If you ask him, Tim’s immediate response to the question of how PKD has affected his outlook on life is, “It hasn’t yet.” He said he refuses to give into depression and that mental attitude accounts for a lot. “There’s stuff that I can’t do that I used to be able to do,” said Tim with a shrug. “I’m an avid pheasant hunter and I can’t walk as far as I used to—I get muscle cramps. Your blood’s not being filtered, so impurities build up, and your muscles are going to say ‘enough is enough.’” Now, before taking on any activity, Tim said he has to ask himself tough questions about whether or not he can physically handle it. Late-night card games are a thing of the past, and his tolerance for social activities is dwindling. Volunteer opportunities, activities important to Tim and Ellen, must be carefully considered. “I’m still involved with a hunting retriever club that my wife and I helped start about six years ago,” said Tim. “I’m still a judge for that in our summer hunting retriever trials. But now I’m down to only one day of the weekend instead of two days plus setup on Friday—that’s just being reasonable.” But objectivity can take you only so far when systematically letting go of the activities you’ve always loved. Even a positive, logical attitude wavers now and then. When talking about his years on the state rifle team, Tim showed a glimpse into the strain of constant re-evaluation. “I’ve gone to the national matches for the last eight years or so,” he said. “But this year… maybe not.” Silence stretched while Tim paused, struggling for control over his emotions. In his typical, positive fashion, he rallied by focusing on what he still can do. He’s rekindled an interest in radio that first started when he accompanied his sister, Teri, on a medical mission to Honduras back in the 1990s. “About six months ago I thought, ‘I’d like to get back into that radio thing again,’” said Tim. He contacted the local radio club in Alexandria and went to one of their meetings, as well as taking his radio test; he scored proficiency in the middle of three levels. “What’s going on here is that I’m moving away from scuba diving and sky diving and sailing, pheasant hunting and deer hunting, and moving toward a more pedestrian point of view,” Tim said. “You can sit in a chair and mess with the radio. You have to evaluate how you can keep active, both mentally and physically, and learn new things, and still be a participant—a part of the community but not out there digging the ditch, so to speak.” In the spring of 2009, Tim’s kidney function had dropped past the line—20 percent of normal—that meant he would be placed on the national list of people waiting for a kidney transplant. That was just over three years ago. Tim was registered at the University of Minnesota Medical Center, Fairview, transplant center, where they told him the waiting list for a deceased donor is approximately five years. “There’s no way that a potential recipient can check that,” said Tim, “because it’s all based on compatibility and availability. I think it might be longer than five years. I mean, let’s be honest, whether it’s Fairview or whomever, they need to give a potential recipient some idea. Five years—that’s something you can grab onto and say, ‘I can tough it out for five years.’ But is it really five? Who knows.” Members of Tim’s family underwent testing to be a live donor; none were a potential match. Meanwhile, as he waits for the news that a match has been found, Tim said he’s avoiding kidney dialysis as long as possible. Dialysis is the artificial process of getting rid of waste and unwanted water from the blood and requires weekly, sometimes daily, maintenance as well as extra medications and strict attention to diet. Tim said he’s working with an outstanding nephrologist at CentraCare in St. Cloud. As far as going on dialysis, Tim laughed and said, “He and I…negotiate.”  As long as he’s feeling fine and can function, Tim said his doctor isn’t pushing the issue. “But the point is coming. There’s no question about that,” Tim admitted. “I’m hoping until the end of the year—at least get through the summer. It’s the same position I had a year ago—let’s just get through the summer.” Looking past dialysis to a possible kidney transplant, Tim’s positive attitude turns outward. He said one of the most important things a transplant would do is to allow him to give back to his community, to society. “It’s not about ‘what’s in it for me, or what can I get next?’” said Tim. “We’ve reached a point in our lives where we think, ‘How can we give back for all those benefits and all those blessings we’ve had to allow us to get to this point?’ ” A donated kidney would allow Tim to pursue those things, he said. “It would allow me to be a larger participant in my home life and in my community. I find myself now becoming less and less of a participant and more and more of an observer.” In talking with him, it’s clear that not volunteering his time, energy and resources has been frustrating for Tim. “I have to say, ‘We need to save our resources for this upcoming thing,’ whether it’s for me or for my survivors,” he said. After viewing the issue from the inside, Tim said if anything, his wish would be that more people would allow themselves to consider organ donation—whether it’s on their driver’s license or signing up to be part of the pool.     He said he realizes a young person is probably not going to consider live donation; even at less than a 1 percent chance that something may go wrong, he understands that parents wouldn’t want to risk their children being motherless or fatherless. But it’s something he said anyone can start thinking of as an option for some point in their lives. Tim said he now looks at organ donation as a “next step” in giving back. “That’s more than showing up for a half hour and saying ‘I was there,’” he said. “It doesn’t get big publicity. There’s no group photos. It’s something that takes a different type of person. These people are hard core.” Tim laughed. “Am I dodging the question here?” He’d been asked how a kidney transplant would affect him, personally. Tim-style, he’d turned the question inside-out, focusing on the positive traits of potential donors instead. As he lives with the effects of PKD, waiting for a potential donor and staving off dialysis as long as possible, Tim’s attitude of perseverance can be summed up with an analogy he gave. He said, “I picked up eight little apple trees yesterday at the farm store. Instead of all eight going in the ground, I’ll probably only get four in the ground today. But you know, I’ll enjoy myself just as much.” Story contributed by Pope County Tribune in Glenwood

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