Bryan Knapp GS sees two things on his refrigerator door when he enters his kitchen: pictures of his three-year-old son Lincoln, and a list of foods and beverages that he can and cannot consume. The list is necessary because Knapp has Alport syndrome — a hereditary kidney disease — and since his 2003 diagnosis, has been on a low-potassium and low-sodium diet.
"I'm on meds and the renal diet. The goal is to slow down degeneration, and hopefully get a transplant," Knapp said, while sitting in the living room of the East Side apartment he shares with his wife, Katie Silberman '94. "I'm now at 10 to 11 percent kidney function. Most people where I'm at would be on dialysis."
Knapp's hearing aids are the only noticeable outward signs of his condition. The 42-year-old remains active by walking his daily commute from his home near Brown Stadium to the University's central campus, where he is studying American history. Approachable and warm, Knapp talks about his health problems in a calm, self-deprecating manner.
"I'm not on dialysis, and I'm relatively healthy. I do get really tired on some days and I'm basically deaf," Knapp said. "I can feel the strain, and it is harder to concentrate."
Silberman — who currently works for the national nonprofit Science and Environmental Health Network — and Knapp are expecting their second child in March, and both said they hope to find an organ donor in the near future. Their main motivation is to ensure that their children have a father. "There's something about having a small child that takes you out of yourself," Silberman said.
Searching for a match
Knapp has been on long national and state-wide waiting lists for a transplant for seven years.
"It all depends on what blood type someone is. That determines how long they need to wait," said Bette Hopkins Senecal, the nurse manager for transplants at Rhode Island Hospital. Knapp's brother is willing to donate his kidney, but does not have the matching blood type.
"It's stressful for patients because they obviously don't know when they'll hear about a match. The average wait is three to five years," Senecal said.
Because of the long and frustrating wait, the couple has taken the search for a donor into their own hands. They have been using the Web to get the word out to potential donors, through Facebook, Twitter and their Web page, "Make Bryan Healthy."
But so far, the search has only led to dead ends. "One thing that is really challenging about being in this situation is the ups and downs. People mean well, they'll get tested, but then see what it means to be a donor and do not pursue it," Silberman said.
Silberman said 10 potential donors have gone through the testing process, with no positive results. Any potential donor would have to match Knapp's type-O blood. Silberman said the donor would have to have health insurance — though Knapp's University-sponsored health insurance would cover the charges — and be healthy.
A few times, Knapp and Silberman have gotten their hopes up — only to be disappointed. In one instance the couple heard about an Orthodox Jewish woman in Brooklyn who helped recruit organ donors. Placing a notice in a temple bulletin, the couple received a response from the woman, who said she knew of an Orthodox rabbi who would be willing to donate his kidney. The plan fell through when he learned that Knapp was not Jewish — though Silberman is.
The high cost of health
Knapp said his doctors have told him that some of the indicators for Alport syndrome probably showed themselves as early as at two years of age. It wasn't until he began losing his hearing that Knapp sought advice from his physicians.
"I kept wondering, ‘why can't I hear?' I kept coming to loose ends, and got different answers from different people. I finally went to a new doctor in Oakland who noticed that my creatine levels spiked. That's when I was diagnosed with Alport syndrome," Knapp said.
Alport syndrome is considered a rare disease, said Sharon Lagas, president of the Alport Syndrome Foundation. It is caused by a defect in collagen follicles, affecting the kidneys, ears, eyes and sometimes the esophagus, she said.
The dead ends and misdiagnoses that Knapp experienced occur too frequently, Lagas said. With medical testing like skin biopsies, Lagas said she can't give a reason why the disease is so often misdiagnosed.
"Health insurance is a big part of our story," Silberman said. While Knapp worked on his master's degree in history at Washington University in St. Louis, the couple was covered by the school's health insurance plan, which only partly covered Knapp's various doctor's appointments and tests.
The couple found themselves often moving through a tangle of red tape, at one point hiring a health insurance investigator to help them sort through what Silberman called "our insurance mess."
"It got to be where we were paying $16,000 a year, which is so crazy," Silberman said. To help figure out the complexities of paying for such high health care costs, Knapp said he and Silberman became "the middlemen, dealing with insurance companies on the phone. We were the brokers between these huge organizations and it was impossible — no one would negotiate."
When looking for an institution where Knapp could complete his doctoral work and be covered by a more attractive health insurance plan, the couple looked to Brown.
"We looked for places that had better plans, and Brown had it. They even covered my hearing aids," Knapp said.
While the Brown plan is significantly better than what the couple had in St. Louis, they still have to pay "hundreds and hundreds of dollars each month," Silberman said.
Knapp said the stress of finding proper health care is something that could lead him to become "something of a health care reform agitator."
Silberman agrees the problems with health insurance are a strain, but sees her family's story as just "a shred of the problem." She said the couple's struggle with insurance is all the result of capitalism, with "50 million Americans living the story we're living."
Hopeful for the future
Despite the uncertainty of finding a donor soon — even if Knapp's kidneys fail, he will still survive by being put on dialysis — Knapp remains hopeful that everything will work out.
"I see myself getting a transplant during a summer or winter break. It would be hard for me to take a long break, since now I have steam. My work at Wash U. leaves me a year ahead of my cohort."
In their apartment, with their son napping in the other room, the couple is calm and self-assured. "You can't faze me, you can't put me off balance," Knapp says confidently. Silberman looks to him, her words flowing directly from his. "You adapt to what life gives you."
"I'm not afraid to die. I love what I do, and I'm doing it," Knapp says. "I need to get a job for Lincoln and the baby. I need to be there for my kids." Knapp looks to his wife as she gives him an affectionate smile.
"I don't feel sorry for myself. I put it in a box and put it away on a shelf."
