Franklin Park man waits, hopes for liver transplant

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Franklin Park resident Ken Gussy organizes his 16 daily medications. Gussy needs a liver transplant. He has Crohn's disease and juvenile hemochromatosis, and his liver is failing. | Tamara Bell~Sun Times Media

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Updated: February 27, 2012 8:26AM

Ken Gussy was having an awesome time the night of March 25. It didn’t last.

Gussy, a 28-year-old Franklin Park resident, joined his sister Melanie, mother and grandfather for a visit to Majestic Star Casino in Gary, Ind. The night started well.

“We were having a great time that night,” Gussy said. “My grandfather and I were losing our shirts playing Blackjack and slots, but my mom was hitting jackpot after jackpot.”

Then Gussy started to feel dizzy. He’d recently been diagnosed with difficulty processing iron in his blood so the dizziness wasn’t a surprise. When emergency medical technicians showed up and wanted to take him to an emergency room, he refused.

“I just wanted to go home, I figured I’d feel better there,” Gussy said.

His mother agreed to watch Melanie’s children for the night. The next morning, Melanie got a call from her 6-year-old daughter.

“She said, ‘Grandma won’t wake up,’” Gussy said.

His mother had been in pain from kidney problems and other medical challenges. She’d been using a prescription patch to reduce the pain. That night she’d inadvertently put on a second patch and overdosed, Melanie said.

“We were insanely, ridiculously close,” Gussy said. “I went into dark hole, pretty much. I was never suicidal, but I would hurt myself, cut myself.”

On March 30, in the midst of funeral preparations, Gussy got a call from his doctors. He’d been diagnosed with cirrhosis of the liver.

“I really didn’t react at all to it,“ Gussy said. “It wasn’t until about a month later and I got put in a new hospital that it was starting to sink in, this is pretty serious. I’m in a lot of trouble here. Then I went back into that deep funk hole. Straight depression.”

With cirrhosis, a healthy liver is slowly replaced by scar tissue that blocks the flow of blood through the liver and slows the processing of nutrients, hormones, drugs and toxins.

It’s a disease that is frequently associated with alcohol abuse though anything that damages the liver can cause it.

“I never smoked and am a social drinker,” Gussy said.

The only option

The liver weighs about 3 pounds and performs various functions, including storing excess nutrients and sugar, ridding the body of harmful substances in the blood and breaking down saturated fat, according to WebMD.com.

At first, doctors thought they might be able to save Gussy’s liver. After a while, however, they determined a transplant was his only option.

Liver transplants for adults are fairly recent strategy, having started in 1997. That’s according to Talia Baker, a transplant surgeon at Northwestern Memorial Hospital and director of the adult living donor liver program.

“The liver is really the only organ in our body that regenerates,” Baker said. “Even if you cut two-thirds to 80 percent, it will regenerate.”

The main requirement for a donor is a matching blood type, Baker said. The donor’s liver also has to be large enough so he or she can donate part and survive.

Gussy’s sister Melanie, a 29-year-old mother who lives less than a mile away from Ken, volunteered to donate part of her liver to her brother.

“We were a typical brother and sister (growing up),” Melanie said. ““He bit me.” “She took my comic book.’”

On Friday, after going through multiple medical procedures - blood tests, kidney tests, an MRI, ultrasound and a psych evaluation - Melanie was deemed not eligible as a donor.

“I’m incredibly disappointed,” she said via email. “Hopefully he’ll be high enough on the (liver donor) eligibility list so they wouldn’t have needed me anyway. But I’m pretty sick over their decision.”

Baker said she’s “awed” by anyone who comes forward to be a living organ donor.

“It’s such a phenomenal commitment to come into this hospital and say ‘I want to do this for someone,’” Baker said.

That leaves a cadaveric transplant; a liver that becomes available when someone dies. While Gussy waits for a liver to become available, the cirrhosis has started to take its toll.

The complications range from the general – lack of energy - to the specific – gastrointestinal bleeding - to the incomprehensible – electrolyte imbalance. Colds and flu last longer due to a depressed immune system. His skin once turned yellow from jaundice. He has bouts of forgetfulness and recently “lost” an entire week.

His medication has caused swelling.

“My legs have turned into marshmallow legs,” Gussy said, lifting the cuff of a pant leg.

A different life

A couple years ago, Gussy was lean and athletic. He was living in Fort Collins, Ariz. with his girlfriend and working on a bachelor’s degree in social work at Colorado State University.

“In Colorado, I was snowboarding almost every weekend,” Gussy said. “I worked at a retirement facility as a server in a restaurant.

“I had friends out there who cared for me. I cooked dinners, played board games. Life was pretty good.”

Gussy was born in Franklin Park, raised on Ruby Street and attended St. Beatrice School. He graduated from East Leyden High School. His long-term plans were to go into counseling drug addicts and alcoholics.

He followed his then-girlfriend back to Franklin Park in 2010. Gussy quickly found work with Stella’s Pharmaceuticals in Deerfield where he manages accounts, procures orders and does data entry.

Since February, Gussy has lost track of his hospital stays. He guesses he has been hospitalized 13 or 14 times in the past year. He experiences random blackouts that require visits to an emergency room.

“For two or three months, I’d be in the hospital for a week, out of the hospital for a week,” Gussy said. “It’s putting a real strain on my job.

“My employer has been so compassionate and understanding about all this. I have insurance through them.”

Gussy had dealt with ill health before. At age 12, he was diagnosed with Crohn’s disease.

“When there are flare-ups, the body thinks the colon and intestines are foreign agents attacking my body,” Gussy explained.

It’s not pleasant, but the disease is manageable and he’s experienced remissions for as long as four or five years.

In February, Gussy was playing in a Wallyball league – essentially volleyball on a racquetball court.

“Being on the court with the bright lights, some of the other players said I was looking a little bit yellow,” Gussy said.

He went to Westlake Hospital in Melrose Park where he was diagnosed with juvenile hemochromatosis.

“Its an overload of iron in the blood,” Gussy said. “The liver can’t filter out the iron and ammonia in your blood.”

Again, the illness was treatable. Cirrhosis, however is not.

Two years to live

“In July at (the University of Illinois Chicago Hospital), I was given a two-year life expectancy without a transplant,” Gussy said. “Prior to February of 2011, I didn’t even know I needed a transplant.”

Also, Gussy’s contract at Stella’s Pharmaceuticals ends in June. If his employer decides not to renew his contract, he could lose his insurance.

That’s major. Preparation through surgery costs roughly $125,000 estimates Baker. Post-surgery, Gussy has to take immune suppressive medications for the rest of his life. Those can cost $1,000 per month before insurance.

Part of the process at Northwestern Memorial includes finding the money. Neither Ken nor Melanie expect insurance to cover all expenses.

Melanie is fund-raising. She’s created a Facebook page – A Liver 4 Ken – and a friend created http://liveralonecheesemine.chipin.com Check both for fund-raising events.

Individuals interested in contributing can also e-mail aliver4ken@gmail.com

Melanie has also contacted friends. The 13-year-old son of a friend in Rockford will shave his head if people donate $500 in a week. Another is donating a portion of her profits from crocheting. A stylist has offered a free styling to anyone who makes a $100 donation.

“I’m trying to find every angle I can,” Melanie said. “I’ll shave my head if we raise enough money.”

Meanwhile her brother takes handfuls of pills - 24 a day, consisting of 16 types of drugs.

“I’m fatigued all the time,” Gussy said. “I’m missing work all the time.

“My body has been so ravaged by the swelling and fatigue. I haven’t been able to snowboard in a year. Or play baseball or Wallyball in a few months. It pretty much affects every aspect of my life. I had to drop out of school.”

If he gets a transplant in time, the odds are with him. The one- to five-year survival rate is 87 to 93 percent, which Baker said is compatible with other types of organ transplants.

While Gussy can’t do anything to speed up the availability of a liver, last week he took a step in another direction.

“I’m still not really accepting my mother’s death yet,” Gussy said. “I’m starting to see a grief counselor to learn how to cope with it.”