The Tribune Democrat, Johnstown, PA

Local News

May 17, 2014

Fundraising launched for man needing multi-organ transplant

JOHNSTOWN — For decades, Joe Umholtz thoroughly enjoyed being a fixture of the Ebensburg community, although he’s since been forced to move. Residents may know him as “Halloween Man.”

The 58-year-old loved to make October magical for the local youngsters, either through Ebensburg’s “Spirit Night” event, for which he often wrote stage play scripts and acted as a historical character, or the elaborate decorations he placed around his home every year.

“I ended up with 20-some-odd tombstones I made over the years, with different decorations,” he said, which were fashioned from leftover remodeling materials. “I just did up the side of the house and the kids loved it. It was great. They’d be lined up around the block.”

One young girl in particular stood out – she stepped onto his festive porch around 20 years ago.

That year, Umholtz was imposingly dressed like the Grim Reaper, complete with ashen skull mask and a tattered, ebony shroud. It didn’t sit well with the fair-haired tyke.

“There’s chains rattling and ghosts howling and she’s clinging onto her mother’s leg for all it’s worth,” he said. “I leaned out and I pulled my mask off so she could see there’s a real person under there. I said, ‘Is this better?’ And she shook her head ‘no.’ ”

Umholtz roared with laughter. He said the mother apologized profusely, but how could he be upset? The moment – and the comedic timing – was perfect.

Perhaps the one thing Umholtz can appreciate more than a creepy costume and a spun tale is a good laugh. His sister, Twila Colville, said her “larger than life” brother has merrymaking in his veins.

“He was the original ‘photobomber’ – before anybody ever thought that was a cool thing to do,” she said fondly. “He’d put rabbit ears over your head all the time.”

But those smiles, as they appeared in all the old Umholtz family photos, have faded in recent years, Colville said. In 2008, Umholtz was diagnosed with end-stage liver failure. His world has since turned upside down.

Family and physicians were puzzled, as Umholtz neither drank nor smoked. There weren’t many other lifestyle risks commonly associated with liver disease, either. Just shy of 60, and the doctors said he’d need a new liver. But, just four years later, the situation became far more dire.

During a round of tests in 2012, doctors found the veins in his liver had become clotted, a complication that irreparably damaged more of his organs by cutting off the supply of oxygenated blood. Now, Umholtz has added a new stomach, intestines and pancreas to his waiting list.

According to the National Foundation for Transplants, the average multi-organ transplant can cost more than $1 million. Although Umholtz’s insurance will cover the operations, he’s still going to be paying thousands of dollars monthly.

“Even after they receive the organ, they’re looking at a lifetime of cost related to (anti-rejection) medication and follow-up care,” said foundation spokeswoman Emily Joyner about the Umholtz family.

Further compounding matters is Umholtz’s early retirement from the state Department of Environmental Protection due to his declining health.

By the end of his decades-long career, he made surface activities division chief, and spent most of his time in the field inspecting commercial land reclamation. Colville said he would often find time to appear in science classrooms around the state, lecturing on the importance of environmental responsibility.

She said her brother has been weathering the chronic exhaustion that comes with liver failure as best he can. Umholtz said he enjoys fishing. But much of his focus is on his wife, Linda, who has been disabled with chronic back ailments for more than 20 years.

“I’m her caregiver and she’s mine, which works out fine as long as one of the two of us is healthy,” he said.

Both reside in an assisted living retirement home just outside of Fort Lauderdale, Florida, although they still maintain and have funds tied up in their Pennsylvania home. Umholtz said he has to remain within a three-hour drive to the hospital that has approved him for the multi-organ transplant, University of Miami’s Jackson Memorial Hospital – about a half-hour away.

“So Disney World is out of the question,” Umholtz mused, adding that’s not really his thing, anyway.

He said while his wife would prefer to stay in the Sunshine State – and it may be wise, for follow-up care with Jackson Memorial doctors – he misses his mountains and freshwater fishing. He said he hasn’t quite gotten the hang of fishing in saltwater.

Initially, he consulted with UPMC and Hershey Medical Center to be put on a multi-organ waiting list.

He never heard back from UPMC, and Hershey deemed his case terminal – he couldn’t get on the list.

“He was told just to gather his things together, prepare and enjoy the rest of his life,” Colville said. She and other family members pushed for him to get a second opinion.

“It’s always been a tradition in our family to help each other,” Umholtz said.

Colville has been working with the National Transplant Foundation as the chairwoman of his fundraising campaign, although she said it’s been challenging since she recently moved to Colorado. Umholtz’s stepson, Adam, who also lives in Colorado, helped his parents move south and flies back to assist them as often as possible.

“They’ve really pulled through. I can’t say enough good about my son. He’s a godsend – same goes for my sister and nieces,” Umholtz said. “I think sometimes I don’t deserve such a great family. They’re fantastic.”

It’s those bonds that have inspired much of Umholtz’s writing pastime, which drips with slice of life qualities that he said would sometimes mirror the Umholtz household – with a gag or two, obviously.

“I could never write anything humorous, and I stopped writing for almost 30 years,” Umholtz said.

“Then my wife encouraged me to start again, so I sat down and, lo and behold, I could write funny stories. And I really like doing that.”

But lately, it’s been difficult getting into the writing mode, he said.

“When I started to write things, I didn’t like the mood I was portraying,” he said quietly. “That (humor) hasn’t been coming out lately, so I haven’t been doing a lot.

“It’s a strange situation to be in. Your emotions go through a wide range – and they do that sometimes daily,” he said.

“It’s a challenge … to deal with the fact that, essentially, for me to live, someone else has to die.”

Colville said the weight of Umholtz’s situation has been bringing him down. He wants to return home, but she said his wife won’t let him, thankfully. He’s been losing weight, she said – a good thing, considering his condition – and doctors have been managing his condition with a cocktail of blood thinners, a diuretic and anti-clotting medication.

Colville said the positive approach at Jackson Memorial has done wonders for his mood.

“I heard it in his voice when he came back from Miami,” she said. “They didn’t say ‘go home and get your affairs together.’ They said, ‘let’s see how we can help you.’ ”

“He had this wonderment in his voice. I think he had resigned himself to the fact that nobody could help him and he was going to hang on as long as he could for his life,” she said. “Now, I hear that depression again, and I think a big part of it is the money. He’s very worried about that.”

So far, Colville’s campaign has raised just shy of $6,500. Umholtz’s funding goal, which appears on his National Transplant Foundation page at patients.transplants.org, is $25,000.

Joyner said the funds will go toward his post-op medication, relocation expenses and any other costs not picked up by his insurance. Visit Umholtz’s donation page directly by visiting http://tinyurl.com/joe-umholtz.

More donation information can be found in the sidebar.

“(There’s) good days and bad days – mostly good,” Umholtz said of his time in Florida. “I take my medicine and I wait for the phone to ring.

“I’d like to stick around for a number of years to spend more time with (my family) and share some laughs and stories,” he said.

“But what will be will be.”

Justin Dennis is a multimedia reporter for The Tribune-Democrat. Follow him on Twitter at @JustinDennis.

1
Text Only | Photo Reprints
Local News
Poll

What is the biggest key to reducing gun violence in Johnstown?

Tackling the area's drug problem.
Controlling folks moving into city housing.
Monitoring folks in treatment centers and halfway houses.
Tougher sentencing by the court system.
More police on the streets.

     View Results
House Ads