Waiting for a Heart
It started with a cough.
That annoying, persistent cough that so many people deal with each allergy season. That's how things began to unfold last March for Greg Crotzer of Butler.
By August, the 36-year-old father of five was struck with suffering bouts of bronchitis and pneumonia. He gained 40 pounds and suffered continuous shortness of breath.
After a trip to the emergency room and medical helicopter to the University of Pittsburgh Medical Center Presbyterian, Crotzer was diagnosed with congestive heart failure.
Today, the former chef and produce worker is being kept alive by two specialized pumps, a Left Ventricular Assist Device (LVAD) and a Right Ventricular Assist Device (RVAD), while waiting for a new heart. Without the machines, Crotzer would have no pulse.
“It was so surreal I couldn't believe it,” said his wife, Tiffany, 31, about the diagnosis. “The day before he was on a hike. It was really hard to believe.”
Initially, the Crotzers and their five children, Trey, 11; Trinity, 9; Robert, 8; and Olivia and Conner, 2½, remained optimistic the disease was caught early enough that treatment options would be plentiful and successful.
“I felt if it's congestive heart failure, it's probably very early stages,” Tiffany said.
Tiffany's optimism took a hit when continued tests revealed the severity of her husband's condition.
Although a drug to improve heart function initially was used intravenously, Greg returned to the hospital when his skin began to look blue. Doctors performed more tests and discovered his left ventricle was functioning at 8 percent, far below the average 60 percent.
Though insurance issues were a significant obstacle, Greg was presented with the option of enrolling in a trial for HeartWare, a type of LVAD. While the surgery to install the LVAD was successful, doctors discovered the right side of Greg's heart was now failing.
Due to complications from multiple procedures stemming from a faulty pump, Greg was kept in a coma and on a ventilator to try to help his body heal. After he spiked another fever, a specialist performed more tests and discovered he had contracted a blood infection.
Doctors decided to try to wean Greg of his ventilator and wake him up, doing a tracheotomy as part of their plan. Success was short lived, however, when the Crotzers learned Greg had suffered major brain trauma throughout the ordeal.
“The head doctor came by and said ‘It will be months before he remembers his name,'” Tiffany said.
Although doctors recommended Greg be moved to a nursing home, the Crotzers decided to work toward taking him home instead.
“I knew if we made these goals, he would work like heck to get them. He did it with a smile all the time,” she said.
Dr. Jeff Teuteberg, one of the heart failure cardiologists at UPMC, said it is atypical for patients to require both pumps. Although UPMC is beginning to work with more portable pumps and strives to send patients home, many facilities don't.
Teuteberg said options for patients like Greg include an getting an artificial heart or a transplant. Since Greg is doing well with the pumps and due to his age, a transplant is the preferred outcome.“His heart's still in place, but there's sort of big tubes that divert the blood,” Teuteberg said.Tiffany Crotzer said the pumps are cumbersome, but the family is hopeful.“Even with garden hoses coming out of his belly he never complains. And when he does I tell him to ‘Stop it: You're committed to this. It's not something you can do half way. You have some responsibilities. It's part of the deal to stay alive,'” she added.After some cardiac rehabilitation, Greg returned home in February. He since has been hospitalized twice: first to treat hemorrhaging colon polyps, then to remove a clot in his machine.“The hardest part for me was dealing with still being a mom and checking homework and packing lunches,” Tiffany said.“(The children) needed to be normal and that was really important. We spoke really in depth about this and we wanted them to come out of this OK and provide stability in a really uncertain time — balancing being a mother and father,” Tiffany said.Although LVAD devices can be used on a permanent basis, RVADs are designed to be temporary, the Crotzers said. Patients typically are weaned off the machine when they are strong enough or receive a new heart. Despite numerous attempts to wean Greg from the RVAD, the doctors have been unsuccessful.As a result, Greg is on the transplant list, but that presents its own risk.“I didn't realize how many people get transplant but never make it home,” Tiffany said.“Getting a transplant isn't an easy choice. With these machines he cannot die, but when he goes in for a transplant, it's going to be riding a bike without training wheels.”
While awaiting news about a transplant, the Crotzers continue to combat financial constraints.Greg describes himself as “pretty much always a chef” who worked 60 to 70 hours per week, while Tiffany worked as a developmental screener, measuring children for developmental growth.Greg has been unable to return to work.“We are facing many uninsured transplant-related expenses such as co-pays and deductibles, doctor visits, travel expenses and the costly immuno-suppressant medications that he will have to take for the rest of his life,” Tiffany said, estimating post-transplant medical care will exceed $30,000 a year.To help with expenses, family and friends hosted a vendor open house recently at Trinity Lutheran Church. A concert fundraiser also is planned, but the effort so far lacks a venue.Until a transplant is scheduled, the family deals with successes and setbacks as they come.“You would never choose half the situations you can handle getting through. Our time together is limited and we're reminded of it daily,” she said. “This has brought a lot to our relationship and to our family.”Those wishing to make a tax-deductible contribution the Crotzers through the NTAF Mid-Atlantic Heart Transplant Fund should mail it to NTAF, 150 North Radnor Chestnut Road, Suite F120, Radnor, PA 19087. Donations should include a note in the memo naming Crotzer as the recipient. Contributions also can be made by visiting www.natfund.org and entering Greg Crotzer as the patient.
