Machines allow users mobility, ability to take trips and enjoy life
By BETH ALTENA
She said “I feel like someday when I pass on, I’ll be able to know I did something with my life. I helped somebody. I helped someone live. I can’t be a movie star.”
He said, “She is pretty enough to be one.”
She said, “I have to be married to a blind man to get a compliment like that.”
Debbie and John Knapp have a story to tell and a message to get out. John is recently blind due to cumulative affects of diabetes and stays alive with in-home dialysis while he waits for a donor kidney. Debbie is the sole support of the family since John’s inability to work. In addition to long, ten-hour days at her job in the bookbinding industry, she spends hours six days a week performing the duties the dialysis requires.
“I didn’t want him to feel like his life was over because of dialysis,” Debbie described of her decision to take the training needed for John’s medical care. John began dialysis going to a clinic three days a week. He calls the people who work in the Rockford and Clyde Park clinics “angels” but said he nonetheless suffered some ill effects from the routine.
“I was in the hospital all the time, I got sick, I got shingles, I was depressed.” John said the stress on his body from the build up of toxins during the days he didn’t go to dialysis likely contributed to his ill health. Now, with his at-home treatment and six-day a week schedule, he said his life expectancy is increased by fifty percent, plus he feels much better.
The couple can’t leave the state now as John is at the two-year point of the long wait to get a kidney donation and he is required to stay within two hours of he hospital where the surgery will be performed. Since they began the in-home dialysis, they report that the machine and their ability to have it shipped to a destination makes it possible for people on the treatment to travel and even take a cruise. They took a five day cruise to the Bahamas with the machine and did dialysis at night in their cabin.
“This is a lifesaver – you can travel, you can go anywhere, you don’t need to be afraid of it,” said John. He said he is overwhelmingly grateful that his wife is willing to allow him the comfort and better health of the more frequent dialysis. She said she is doing it because she loves her husband.
The couple met thirteen years ago and were married at Frederick Meijer Sculpture Gardens where “hundreds of people were at our wedding,” said John. He laughingly pointed out that they didn’t know all those people, but they were there.
John said he ignored his doctor’s warning about the dangers of his diabetes and didn’t have all the symptoms. By the time he took it seriously, he’d had a stroke, developed a brain aneurism and was in kidney failure. Since he has gone blind and the retina of his right eye has detached.
“I was bullheaded,” he said. He hopes others will heed warning signs of blurry vision and numbness in hands and feet and listen to what their doctors tell them. He was put on a waiting list for a kidney and began doing dialysis at local clinics.
When he and Debbie found out that dialysis was possible at home, they decided to find out more. The three-week course Debbie would have to take is free of charge. Debbie said she wanted to take on the responsibility and is still happy helping her husband, but pointed out that there is no permanent commitment to keep it up.
“If you take the class and later you decide you can’t do it, they are fine with that,” she said. She also pointed out that in a larger family, multiple family members can take the course and take turns doing the dialysis.
The process may not be for everyone. Some dialysis patients have permanent devices for access to veins for the blood to go out and back in. John preferred not to, so his veins have been built up by repeated poking to have scar tissue creating an access point. Debbie meticulously picks off the scabs, called fistula, before inserting the needles for each treatment.
Her training allows Debbie to be a certified provider for in-home dialysis. She knows how many ccs of saline need to keep the line from clotting while she puts the other line in and knows to secure the needle in case there is a problem with the flow of blood. John’s blood flows through a devise that acts in place of his kidney and removes toxins and the substance of urine. Without the treatment he would be dead in five days to two weeks.
If Debbie can get the flow of John’s blood up to 500, the treatment can take as little as two hours. The cost of the equipment and supplies is a whopping $80,000 a month, but for the couple is covered by secondary insurance. Still, after John could no longer work the couple lost their house and their vehicles and had to move to cheaper accommodations.
“We are happier here,” said Debbie. She is also grateful for her employers, who have allowed her the flexibility to leave when she had to for going to doctors visits and other necessary time off. For the moment they are in a holding pattern waiting for a kidney that will improve John’s situation, although there is no permanent solution for him.
John said most kidneys are donated when the donor dies. These cadaver kidneys come in two varieties. Type A kidneys are from individuals who died at under age 35 and are preferable. Type B kidneys come from a donor who died at age 35 or older and may not be in the best of shape. “There are some people who have five kidneys in them,” said Debbie. The non-functional kidneys are not removed from the person receiving the donor, so people who have received multiple kidney donations just keep adding them in.
John would much prefer a donated kidney from a person who has not died. The expectancy of a cadaver donor is five to eight years, while a kidney that is a gift from a live person is expected to function ten to twenty years.
Debbie explained that she is unable to qualify to donate a kidney as she also has high blood pressure. “Most people think that your blood pressure is regulated by your heart, but it isn’t, it’s regulated by your kidneys. If you have high blood pressure your kidneys are already not working right.”
Kidney donation is much less traumatic that many might realize and the procedure has improved greatly over old days, John explained. “He said the donor is given a small incision to remove a kidney and is in the hospital an average of two days and back to work in an average of two weeks. There is no cost to the donor as expenses are paid by the recipient’s insurance. John has type A blood and would be compatible with a Type A kidney, although other blood type kidneys may be compatible.
“Most kidney donors are Para donors,” Debbie explained. She said people wishing to give a kidney to a loved one are sometimes not compatible. They enter a network of others who have the same problem and trade off kidneys to each other’s family members or loved ones.
In other countries the sale of kidneys is not prohibited, Debbie said, and in some countries it is becoming common for young people to sell a kidney to finance their college education. She swore she heard a true story about a kid in China or Japan who sold his kidney for an Ipad.
John and Debbie are not soliciting to purchase a kidney, but hope their story may make someone think about offering that most precious gift. Both were willing to open up their home and tell their story to inspire others to take the dangers of diabetes seriously and not end up in their shoes.
“Mostly I want people to listen to their doctors or go to their doctors with concerns,” said John. “Also, this is about how beautiful my wife is and how much I love and appreciate her. She is one of the best care providers any man could receive. And please donate a kidney.” John’s number is (616) 863-9308. If you call you are sure to catch him within two hours of home.