In 2007, James Johnston was a senior at Pine Tree High School, active in hockey and tennis, and looking forward to heading off to college at Oklahoma State University. In the summer of 2008, he did just that. He hadn’t been at school long when he started having abdominal cramps, feeling tired and passing blood in his urine.
“He had always been a healthy kid, so active,” his mother, Susan Johnston, said. “Even when he was under the weather, he just plowed on.”
But this was more than just under the weather. The college freshmen went to the college clinic and was treated for a urinary tract infection. Realizing the illness was more than just a UTI, the urologist sent him to a nephrologist, doctors who specialize in treating kidneys.
“When the nephrologist got my test results, they were so bad that he sent the police in Stillwater (Oklahoma) to find me,” James Johnston said.
When the doctor couldn’t reach the student, Susan Johnston explained, he called her, too.
“I knew that his sister was staying with James, so I called her and told her to drive him to Oklahoma City right away.”
The mother quickly packed a few bags and took off, too. His father, Norman Johnston, was working in Houston and flew in the next morning. At 18, Johnston was in severe kidney failure. He was diagnosed with Alport syndrome, which according to the National Institute of Health, is an inherited form of kidney inflammation (nephritis). The disorder is uncommon and most often affects men. Women can pass the gene for the disorder to their children, even if they have no symptoms. Hearing loss is also a symptom of Alport syndrome, Johnston said as he removed his hearing aid.
Johnston would not recover from his kidney failure, the doctors told him, and would need a transplant. Until then, he would have to go on dialysis. According to the National Kidney Center, dialysis is a process that removes wastes, chemicals and extra water from the body, and although most people are familiar with the type that is done at a center, there is also a way it can be done at home. Peritoneal dialysis uses the lining of the abdomen, or belly, to filter the blood. This lining is called the peritoneal membrane and acts as the artificial kidney. The person getting this type of dialysis must be hooked up to a machine for up to 12 hours every day.
“It’s a lot of work,” Johnston said.
“And it takes a lot of dedication and responsibility,” his mother interjected. “He really grew up.”
Blushing at the compliment, the son objected. “Don’t say stuff like that,” he said.
“Well, I’m really proud of you,” she said, becoming emotional for the first time during the nearly hour-long interview. “He really stepped up. He had been a typical 18-year-old boy, but, he looked after himself. He grew up.” Even with the dialysis, Johnston was a very sick young man.
“I was tired,” he said.
“Not just end-of-the-day tired,” his mother added. “But absolutely bone weary tired — like having the flu, but all the time.”
The student stacked his classes on a Tuesday/Thursday schedule so he could keep his medical appointments during the rest of the week.
“That did not work well,” he said, adding he was too fatigued to stay awake during his last class.
He said he felt that he had no alternative but to drop that semester. “But, I went back in the spring semester,” he added quickly. It was during spring break of 2010 that it became impossible to continue to peritoneal dialysis due to an infection. The student had little choice but to start hemodialysis at a center. Even though he took the treatment faithfully three times a week, Johnston often found himself sick and always found himself tired.
Johnston’s family watched as his health failed. Doctors would not consider either parent as a possible match for a donor because of various health problems each has. “His sister hasn’t had any children, and because pregnancy is hard on the kidneys, doctors didn’t want to consider her for a match. And James wouldn’t let her, anyway, in case she wanted to become pregnant later,” Susan Johnston said.
“It didn’t seem fair, him being like that,” said Helen Hill, Susan Johnston’s sister. “James is a wonderful young man, really special. He is quiet, but very, very brave.” A stay-at-home mom in Fort Worth with three young boys of her own, Hill talked about watching her nephew suffer for so long and feeling not merely happy, but also grateful to be able to help him. So she decided to donate one of her kidneys. She said her husband had been supportive of her decision from the beginning.
“And my sons adore their cousin James — they were so excited. They thought it was a good idea for mommy to give James a kidney so that he would not have to go on that machine anymore.”
On Jan. 9, Hill was lighter by one kidney. “Oh, I’m great, 95 percent back to normal,” Hill said in a telephone interview Friday. Johnston said he felt better the “day after surgery than I had felt in a long time.”
Both donor and recipient have a message for the public. “I am not talking about this because I want for the world to know my story. I never talk about it,” Johnston said while giving his mother a look and adding, “although everyone seems to know.” “I am talking about it because there are so many people waiting for a kidney, so many people on dialysis year after year … Some literally dying.
“People talk about cancer and heart problems — it gets a lot of publicity. And it should. Those are serious illnesses. But kidney failure is a serious illness, too. So, my point is that I am trying to raise awareness.”
Hill made the same point.
“I’ve heard of people who give kidneys to people they’ve never even met, and I know James,” she said through tears. “People should consider donating a kidney because it makes such an incredible difference in a person’s life.
“People don’t like to talk about what to do if they die, but really, everyone who can should consider becoming an organ donor. I can’t stress the importance it can make in a life — in many lives.”
People considering becoming a living kidney donor can get more information at www.kidney.org.
The government has a website for people considering becoming any kind of donor at www.organdonor.gov.