LOCKPORT – Frank Gritzmacher of Lockport, who has been battling cystic fibrosis all his life, received a lifesaving double-lung transplant Dec. 17, but his family continues to plan a fundraiser that will enable him to receive the follow-up care he needs.
The transplant story is a familiar one for Frank’s father, Albert. He lost another son, Albert III, to cystic fibrosis three years ago. But a double-lung transplant enabled Albert III to live three more years with the hereditary disease.
Medicaid paid for most of the $500,000 cost of the surgery at Columbia-Presbyterian Hospital in New York City, but it won’t pay for what he needs afterward, the family says.
Frank’s surgeons told the family that they would prefer Frank to stay nearby for the next six months after his release from the hospital so he can be monitored and be easily accessible for tests and appointments. That means finding someplace to live in Manhattan, one of the world’s most expensive real estate markets.
If that doesn’t happen, Frank, 33, would have to commute to the Big Apple, said Kristina Chenault, who is helping set up the “Frank Gritzmacher Transplant Franquet” from 5 to 10 p.m. Jan. 24 at Cornell Cooperative Extension of Niagara, 4487 Lake Ave., Lockport, an address better known as the Niagara County Fairgrounds.
The goal is $30,000, and so far nearly $9,000 has been raised, Chenault said.
Frank had been spending much of his time in the adult CF unit at Women and Children’s Hospital in recent years, Albert said, so much so that he knew all the staff by their first names.
“It was scary how often he had to go there,” Albert said.
But Kaleida Health has been phasing out that unit, and Frank’s last hospital stay was in Buffalo General Hospital. He had just returned to his Lockport apartment from what his father called “a round of heavy-duty antibiotics and pulmonary therapy” when the phone rang Dec. 16.
Albert said the call was word that a donor set of lungs was available, and the Gritzmacher family needed to get to New York City. However, they were told that there was time to drive down if they preferred. Albert, with his experience on the subject of organ transplants, said that told him the donor was probably brain-dead and being kept alive by machine until Frank made it to Manhattan for the surgery.
However, Frank and family didn’t drive. Wings Flights of Hope, an Orchard Park charity that provides free air travel for medical and humanitarian missions, flew them to the Big Apple.
No information was provided about the donor for Frank or for Albert III, the elder Gritzmacher said. But the father said the surgeon told him that Frank “got a very good set of lungs.”
He had a very poor set of lungs before Dec. 17. Cystic fibrosis is an incurable disease that clogs the lungs with unusually thick mucus, leading to potentially fatal lung infections. Also, it obstructs the pancreas and prevents absorption of food nutrients.
“It got so he couldn’t take more than a few steps across his apartment without stopping to catch his breath,” Albert said of Frank.
Although Albert III lived only three years with his new lungs, “They’re doing better and better all the time,” the father said. He said he met a patient who had his new lungs for 17 years and counting.
“It’s always a gamble. Living with a transplant is like having a new disease,” Albert said. That’s because the body tries to reject the alien tissue, so anti-rejection drugs are a very expensive must.
“It’s not a panacea, not a cure-all,” Albert said.
Cystic fibrosis is transmitted genetically from parents to children. Research has shown that the disease doesn’t occur unless both biological parents carry the recessive gene that triggers CF. Even so, the chances of the offspring having CF are only 25 percent, according to the Cystic Fibrosis Foundation website.
About 10 million people in the U.S. are believed to carry the CF gene, but only 30,000 Americans have the disease. The number of patients worldwide is about 70,000. Although it can occur in any racial group, whites are most susceptible to CF, the foundation says.
Albert and his first wife, who is now deceased, both carried that CF gene in their DNA makeup, although neither ever had the disease. Albert said he had two healthy children with his second wife, who doesn’t have the disease.
Their offspring, however, will be at risk, depending on who their partners are. “When they think about having kids, it would be wise to be tested,” Albert said.
Such genetic testing was not available when Albert, 61, was first married, but he wouldn’t have had any suspicions, since no one in his family tree had CF. But the gene was lurking in his DNA, waiting to combine with that of a woman who had the gene, too.
Albert III underwent his transplant at the University of Pittsburgh Medical Center, which offered long-term lodging for family members in apartments the hospital owned, for as little as $25 a night.
Albert III had been able to hold a job at Tops Markets for long enough that he had private medical insurance and could choose out-of-state services. Frank is on Medicaid, which limits his choices to facilities in New York State.
The elder Gritzmacher, who retired in 2006 after 30 years as an electrician at Delphi Thermal, formerly Harrison Radiator, said Medicaid will cover medical costs after Frank’s discharge, but not living expenses.
“The doctors want him close by. They want him to live (in New York City) for as long as six months. They don’t want him to live alone, either.”
Various family members will take turns as Frank’s live-in caregiver.
All the money raised at the Jan. 24 event will go to the Children’s Organ Transplant Association, but the money will go into an account exclusively earmarked for Frank’s expenses, said Chenault, a spokeswoman for the association. Albert said that prevents tax and Medicaid eligibility issues that would arise in case of direct donations.
The account remains opens for the life of the patient. “It’s really been a godsend,” Albert said.
The party, with a $20 admission price, will run from 5 to 10 p.m. and will include a basket raffle with prizes including a smart TV and a wide range of other goodies. Molinaro’s Ristorante is catering the event, and live music by the local band White Chocolate is planned.
Items for the raffles may be dropped off at the Empire PC Repair locations in Lockport or East Amherst, Chenault said.
In addition to the party itself, canisters seeking donations for Frank are set up in numerous Lockport-area stores.
“He’s got a lot of friends. He’s touched a lot of people. He’s a great guy,” Chenault said.