Wanted: One hero

Sunday, March 23, 2008

Wanted: One hero

By Meredith Gardner
meredith.gardner@theindependent.com

CHAPMAN -- Every night, 4-year-old Hans Johnson Von Ohlen spends 12 hours sleeping between his great-grandparents in their farmhouse near Chapman.

And as he sleeps, a dialysis machine does for him what his kidneys cannot.

Hans has been diagnosed with end-stage renal disease, a problem that will keep him on dialysis for the rest of his life unless a Good Samaritan decides to donate a kidney to the child.

The Von Ohlen family hopes a member of the public will come forward to help Hans, who is more likely to experience a successful kidney transplant if the organ comes from a living donor.

The family believes, if Hans is finally able to receive a kidney, it will put an end to his 12-hour dialysis sessions, monthly trips to the University of Nebraska Medical Center, daily doses of eight different medications and fatigue.

"He'd be able to be normal," great-grandmother Jetta L. Von Ohlen said.

Hans, his twin brother, Bud, and their parents have lived with great-grandparents Jetta and Fredie Von Ohlen since the twins were born.

As they look back on how Hans' disease progressed, there were signs early on that Hans may have had kidney trouble, Fredie Von Ohlen said.

"The hindsight is always better than the foresight," he said.

Hans' diaper was never as wet as Bud's, Jetta Von Ohlen said. Old photos of the twins show Hans with a face and body significantly more bloated than his twin brother's.

When the Von Ohlens took 1-year-old Hans to see what was wrong, the doctor attributed his problems to allergies, Jetta Von Ohlen said. Hans was later diagnosed with minimal change disease, a kidney disorder that leads to high levels of protein in the urine, low levels of protein in the blood and high cholesterol. He was put on steroids to combat the problem but to no avail.

When he was 2 years old, Hans started having watery stools. During a visit to a doctor in Omaha, doctors found he had adenovirus, which most commonly causes respiratory illness. Hans suffered from a climbing temperature and hemolytic uremic syndrome, which causes kidney failure.

Hans and his great-grandparents spent six months in Omaha, where Hans had at least eight surgeries at the medical center. His great-grandmother was trained and certified to run Hans' dialysis machine before the family could return to their Central Nebraska home in May 2006. Now, Hans has been cleared to receive a kidney transplant.

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The normal human body has two kidneys, bean-shaped organs about the size of a fist, according to the National Kidney and Urologic Diseases Information Clearinghouse. The kidneys will process about 200 quarts of blood per day, filtering out waste and extra water. That waste passes out of the body in the form of urine.

Because his kidneys have failed, Hans undergoes daily peritoneal dialysis to remove the waste products from his blood. Fluid is put into his abdomen at around 4 p.m. every day. That fluid captures the waste. Hans is then hooked up to his dialysis machine, which drains the old fluid and circulates new fluid overnight.

To perform the dialysis, Hans had a catheter inserted into his abdomen, which is taped up and pinned to the inside of his shirt as he goes about his daily activities. This family must watch him to ensure he keeps the catheter clean and undisturbed, however, and he cannot go swimming or take a bath.

He continues to suffer from high blood pressure and has dietary restrictions.

Hans' medical demands can create a strain on the family at times, which must make his dialysis, doctor's appointments and medication disbursements a normal part of their daily schedule.

"This Hans deal pretty much keeps you grounded," Fredie Von Ohlen said.

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The Von Ohlen family is looking for a "special person" to volunteer to be Hans' living kidney donor.

The donor must be at least 19 years old, have O-positive blood and cannot have high blood pressure or diabetes, Jetta Von Ohlen said. An adult kidney will reduce in size to match the use of a child, she said, and the donor's remaining kidney will enlarge to accommodate its increased use.

Volunteers must undergo tests to ensure their kidney is a match before the surgery can take place.

The donor will have to take at least two weeks off work or normal daily activities to complete the transplant. And while the surgery can be paid for by Medicare, lost wages will not be reimbursed.

The Von Ohlens have had a number of people say they would donate a kidney to Hans in passing. Now they want someone to follow through.

"I hope that somebody will," Jetta Von Ohlen said.

How to help

The Von Ohlen family is looking for someone to donate a kidney to 4-year-old Hans.

The volunteer organ donor must meet the following criteria:

19 years or older.

O-positive blood type.

No high blood pressure.

No diabetes.

For more information about donating, contact the University of Nebraska Medical Center at (800) 401-4444. Jetta and Fredie Von Ohlen can be reached at 986-2633.

http://www.theindependent.com/stories/03232008/new_mainnews23.shtml

PHOTO: Hans Johnson Von Ohlen with his twin brother, Bud. Hans is hoping to find a kidney to replace his that are in end-stage renal disease because of hemolytic uremic syndrome. Bud does not have the disease.