An emphasis on living
Posted on Thursday, December 29, 2005
Orchestrating the perfect harmony between an athlete and a 39-inch barrier was never a problem for Clyde Horton of Little Rock. But even those who know Horton best weren’t sure he could clear the biggest hurdle of his life — a race against an extremely rare disease that began to strike with such cruel force in late 1997 that the Arkansas high school coaching icon thought he’d never leave the hospital alive.
Eight years later, Horton still is outrunning Cronkhite-Canada syndrome, confounding the medical community by surviving an incurable illness, that, at its worst, left him bedridden, barely able to eat and briefly wishing to die.
His obituary already written, it’s as if Horton, 76, hit the fast forward button and skipped over the chapter titled “terminal.” His condition, as best his doctors in Little Rock and at the Mayo Clinic in Jacksonville, Fla., can figure, is in remission. Or, at least stabilized.
Horton again plays golf each weekday morning with a colorful cast of seniors.
And for the past three seasons, he spent his afternoons volunteering as a football assistant at his alma mater, Little Rock Central High School. That’s where he earned acclaim and Hall of Fame recognition by winning 22 state championships and producing some of the country’s best high hurdlers as track / cross country coach from 1963-1987.
While his hair is a little straighter, his posture a little slouched from osteoporosis, Horton remains a living legend.
Emphasis on living. Medical marvel “This guy should have died, by all rights,” said Ron Hardin, a Little Rock gastroenterologist who has treated Horton for several years. “I hate to be morbid. But every time I’d see him, I just felt this was amazing that he was doing well. Some people, you tell them they’ve got an illness that may be terminal, and they go home and sort of prepare to die.
“ He just went home and prepared to live. ‘Whatever God gives me, that’s how long I’ll go.’” Since early 1998, Horton has battled Cronkhite-Canada, a noninherited disorder that causes multitudes of polyps in the intestine, skin pigmentation changes, hair loss and nail malformation.
Symptoms include diarrhea, weight loss, bloody stools and a blunted sense of taste.
Horton is a walking, talking historical textbook for the disease, which University of Massachusetts doctors Leonard Cronkhite and Wilma Canada first diagnosed in 1955.
Doctors discovered more than 100 cases of Cronkhite-Canada over the next 40 years in Japan, with fewer than 100 in other countries.
Horton was only the third case of Cronkhite-Canada diagnosed by the renowned Mayo Clinic.
The other two patients died.
“I thought, ‘Holy Moley, we know what it is,’” said Horton’s wife of 53 years, Mary Jo. “We were really glad to know the name of it, but the problem was, I mean, they didn’t know what caused it and there was no treatment — and everybody was dead.” Clyde Horton nearly became the third victim after the constant assaults by Cronkhite-Canada left him bleeding nearly to death in October 1998.
Horton was rushed to the Mayo Clinic in Jacksonville, where he has spent almost 25 weeks of his life the past eight years, and underwent surgery to remove his spleen, which was harboring his blood platelets.
Mary Jo Horton knew the risks of the splenectomy included her husband dying from infection or a heart attack.
On the operating table, a blood clot caused Horton to have a myocardial infarction, a heart attack.
Doctors were so rushed to close a 10- to-12-inch serpentine incision, Mary Jo Horton — in nonmedical diction — said “things were moved out of the way,” leaving her husband with a protruding hernia on the left side of his abdomen that still is visible today.
Horton had a second heart attack three days later.
“I didn’t think I’d bring him home from over there,” Mary Jo Horton said.
Somehow Clyde Horton, a living skeleton at only 120 pounds, willed his way back and returned to Little Rock after a 12-day hospital stay.
There would, however, be many more trips to Jacksonville, a city of 780, 000 on the Atlantic Ocean in the far northeast corner of the state.
Since Horton was diagnosed with Chronkhite-Canada in February 1998, he has made 15 subsequent visits to the Mayo Clinic, the last in December 2004 when he had three benign polyps removed.
Mary Jo Horton guesses her husband has been hospitalized at least 16 other times in Baptist Health Medical Center in Little Rock, including four stints for pneumonia.
There have been at least 17 colonoscopies, or internal examinations of the colon using an instrument that is inserted into the rectum and has a small camera attached to a flexible tube.
Horton has had as many as 32 polyps removed during one procedure.
The polyps, which are growths that project from the lining of the colon, kept Horton’s body from absorbing nutrition, indirectly wrecking his immune system and bone density.
None of the hundreds of polyps removed from his body has been cancerous, one of the biggest fears doctors have for Horton’s long-term survival.
There’s no evidence that new ones are growing, either.
Horton’s medical bills are well over $ 1 million, with as much as $ 10, 000 a year spent on medication. Both sums have been offset by two insurance plans he carries and numerous “comps” for services provided by the Mayo Clinic, which, understandably, deems his case extraordinary.
“After his first colonoscopy,” Mary Jo Horton said, “the doctors did another because they wanted to film it for medical science. That was when we got page after page and the bill was, ‘No charge. No charge. No charge.’” The sixth floor of the gastrointestinal unit at the Mayo Clinic in Jacksonville has become something of a shrine to Horton’s battle with the disease.
There have been pictures of his hands — sans fingernails — hanging on the wall. By 1999, his file was so bulky that it filled two drawers of a filing cabinet.
Hardin, who acts as the eyes and ears for Horton’s primary gastroenterologist in Jacksonville, Herbert Wolfsen, said the paperwork he’s collected locally on Horton could make for a good doorstop.
The paperwork gets thicker because Horton, perhaps drawing on a resolve forged by 33 1 / 2 years in the Air National Guard, or a deep religious conviction, somehow continues to dodge the death sentence most feared he had received.
“It [death ] did cross my mind, because he was very, very ill,” said Lynn Lindsey, executive pastor at Pulaski Heights United Methodist Church in Little Rock, where Clyde and Mary Jo Horton have attended for 45 years. “Of course, I was very worried about him. It looked really, really grim there for a while. But I didn’t give up.
“ And I remember thinking that if anyone could beat that illness, it would be Clyde Horton because of all these characteristics. He was faithful and brave, and yet, humble and accepting of help and encouragement.
“ And then he has a remarkable family.” The rock, as Lindsey dubbed her, is Mary Jo Horton, 73, a retired teacher and administrator from the Little Rock School District who has her own medical demons.
A 33-year breast cancer survivor, Mary Jo Horton suffers from atrial fibrillation, a condition that produces an abnormal heart rhythm. She had a pacemaker installed last May and jokingly refers to her problems as “electric” and says her husband’s involve “plumbing.” Mary Jo Horton’s motto : One day at a time.
“I credit God first and the physicians and her second,” said Hardin, whose son Daniel received track instruction from Clyde Horton while attending Little Rock’s Pulaski Academy High School in the mid-1990 s. “From a medical standpoint, he shouldn’t be alive. But practically, she was so good about making sure he took his medication and paying attention to detail and following up on things.” Difficult diagnosis The problems, Mary Jo Horton said, began in the spring of 1997. Clyde Horton began losing weight, stopped eating, found blood in his urine and watched a mysterious fluid-filled lesion suddenly appear under one of his eyes.
“Weird things,” Mary Jo Horton said.
Doctors initially believed her husband was having a “highly allergic” reaction to Macrolide, an antibiotic he took after having a large cyst surgically removed from his back.
She thought he had cancer. A dozen doctors in Little Rock couldn’t come up with any concrete answers, though one suspected lupus, a chronic autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue.
At the same time, Horton’s curly gray hair began to fall out and his fingernails turned a chalky white color, eventually peeling away. He lost his toenails, too.
Horton’s once robust 6-foot, 197-pound frame literally was melting away.
A dermatologist in Little Rock, Mary Jo Horton said, didn’t know what her husband was fighting in late 1997, but added that his body was putting up “one hell of a battle.” For much of 1998 and 1999, Horton’s diet consisted of menu items not exactly associated with a five-star restaurant : Wendy’s Frosty, vegetable soup, toasted cheese sandwich and Ensure, a nutritional supplemental drink.
“That’s it,” Mary Jo Horton said, adding that her husband often gagged with anything in his mouth. “He couldn’t eat anything else. He had lost so much weight that when he sat down on the commode, he fell in.
“ He just didn’t have any rump left.” Mary Jo Horton became such a familiar face at the nearby Wendy’s on Rodney Parham Road that employers simply asked, “How many today ?” when she hit the drive-through to stock up on Frosties, the fast food chain’s popular milkshake.
An ice chest full of 8-ounce cans of Ensure often was stashed for Clyde Horton’s many trips to the bathroom that pretty much was his nonhospital world in 1998 and 1999 along with the bedroom and a recliner parked in front of a 52-inch big-screen television in the den.
“What I couldn’t believe is why I could drink the Ensure, even though the taste was horrible,” said Horton, who complained that his mouth tasted as if it had been sprayed with insecticide. “Everything was horrible, man. I just had poison in my system and that caused everything to taste bad.” Doctors made Horton drink seven cans of Ensure daily to help him meet his nutritional needs, but he disliked the taste so much that he would hold his breath and swallow.
Sometimes, he said, it took almost 30 minutes to drink one small can of Ensure.
“It was like drinking poison,” Horton said.
Horton initially was hospitalized for about a week in December 1997 at St. Vincent Infirmary Medical Center in Little Rock. The battle moved to the Mayo Clinic in February 1998. Finding answers in Florida Horton spent a month undergoing tests, biopsies and nuclear scans, with all data and lab samples forwarded for analysis to Mayo’s original clinic in Rochester, Minn. Branches have since opened in Jacksonville and Scottsdale, Ariz.
An interventional pathologist in Rochester concluded two weeks after Horton entered the Jacksonville facility that he was suffering from Cronkhite-Canada, possessing five of the seven characteristics then known about the disease, Mary Jo Horton said.
“I didn’t know what Cronkhite-Canada syndrome was,” Clyde Horton said. “I was just told there was no treatment or cure.” Immediately, Mary Jo Horton began researching the disease on the Internet. She decided that if doctors were smart enough to earn a medical degree, surely they could keep her husband alive.
“Infection will be what kills him,” Mary Jo Horton said. “Not from Cronkhite-Canada, but infection that his body can’t fight off. Things that wouldn’t even bother you and me can kill him. It doesn’t take much and that’s why the other people died.” After Horton returned home from his onemonth stay at the Mayo Clinic, his family began charting his weight, caloric and protein intake daily and faxing the results to doctors in Jacksonville.
Horton also occasionally would note his symptoms on each report — and the massive quantities of medication he was taking.
Horton weighed 159 pounds when he returned home in early March from his first trip to the Mayo Clinic, but his condition began to deteriorate over the next few months. He stubbornly rejected a feeding tube, fearing that he would never be able to swim again in Greers Ferry Lake, where he and Mary Jo have a vacation home.
At times, Horton was so weak that his 6-6 son Mark, a standout tight end at Central from 1978-1980, would have to carry his father up and down the stairs of his two-story house in west Little Rock.
Zapped of strength and suffering from neuropathy — his left foot flopped from nerve damage related to the disease — Horton was unable to walk from his house past the next-doorneighbor’s driveway.
On Oct. 1, 1998, Horton weighed an alarming 131 pounds, his arms so skinny that skin hung several inches when he lifted them, Mary Jo Horton said.
“Patting him on the shoulder was like patting a skeleton in a lab,” she said. “It was nothing but bone.” Hardin said Cronkhite-Canada robs the body of its ability to absorb nutrition by attacking the stomach, large intestine and small intestine.
In Horton’s case, it looked as if tiny hand grenades had gone off in his stomach and colon, Hardin said.
“Literally, thousands of ulcers, little tiny ulcers develop,” said Hardin, who runs Arkansas Digestive Diseases Clinic in Little Rock. “That was the disease. Your body forms antibodies against itself and you get ulcers in your intestinal lining. The ulcers try to heal and they end up forming what we call inflammatory polyps.” The polyps, Mary Jo Horton said, resembled small mushrooms in her husband’s colon and a sea of large watery blisters in his stomach.
In his darkest days leading up to the splenectomy, Horton’s blood was so thin that he would begin to bleed by simply touching his nose.
The normal amount of platelets — elements in the blood that assist in clotting — is usually between 150, 000 and 450, 000 cells per microliter (one-millionth of a liter ) of blood.
Because his spleen was eating his platelets, Horton’s count was fewer than 1, 000.
Mary Jo Horton remembered her husband tailgating before the Arkansas-Kentucky football game on Oct. 3, 1998, with gauze stuffed into both nostrils to stop the flow of blood.
“He was literally bleeding out,” she said.
Horton was so frail that he couldn’t attend the game, a 27-20 Arkansas victory that was the first signature triumph in Little Rock for his close friend, Razorbacks Coach Houston Nutt.
Following Horton’s brush with death after having his spleen removed — his only surgery during his illness — he rebounded physically, noting on one report to doctors in late December 1998 that he had shot up to 168 pounds, the fingernails on his left hand were getting hard, all his nails had good color and his overall skin tone appeared more normal than it had the previous 18 months.
Maybe a month earlier, Horton had a breakthrough moment in his fight for survival, a sort of Epiphany, according to Mary Jo Horton.
“My bedroom turned white and something told me to get up and walk,” Clyde Horton said, his voice choking with emotion. “I got up out of that bed, got down the steps and walked a mile and a half. I couldn’t get down the stairs without the help of my son and couldn’t walk to the next-doorneighbor’s driveway.
“ But that day, I just got up and walked. From then on, I knew I was getting better.” Horton began walking regularly, tracked undercover by his wife on foot or in a car.
But for every small step forward, Mary Jo Horton said her husband seemed to take one step back, essentially “stuck in neutral” because doctors were learning on the fly about a disease that initially contained little more than a paragraph in giant medical books.
Horton believed a 10-day vacation to Hawaii in April 1999 would be the last he ever took with his family.
Accompanying Clyde and Mary Jo Horton to Maui were their daughter Carol, son-in-law Scott Kensel, and three grandchildren.
“Everybody else was having fun and sweating and I was just sitting in a chair,” Horton said. “I couldn’t do anything.” Mary Jo Horton said Scott Kensel, an emergency room physician in Springfield, Mo., said he believed his father-in-law would be dead by Christmas.
But something unexpected happened on the trip, another sliver of hope for the future. On the plane, Clyde Horton ate a small Omaha steak, his first “normal” meal in nearly 18 months.
Horton was still around for Christmas, and the Christmas after that, and the Christmas after that...
Still, Horton became so frustrated in his daily fight against the disease that he broke down emotionally one day in early 2000.
After returning home from a night of playing bridge with friends, Clyde and Mary Jo Horton, instead of retiring to bed, composed an obituary on a home computer.
“I know of one time, and I’m really ashamed of this, but I prayed to God to die,” Horton said. “I knew in my heart, one time, that I was gone. I knew I was. Just couldn’t make it.” The obituary still hasn’t been printed.
By late 2000, Horton started getting better again. He ate normal food again, and the removal of the polyps allowed his body to retain the nutrients it needed.
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