Basketball acts as medicine
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On Dec.16, 2001, Trey Schwab showed up at St. Joseph's Hospital in Wauwatosa, ready to finally get some answers.
A lung biopsy, however, is a more invasive procedure than a bronchoscopy, so Schwab would have to be admitted to the hospital for four days.
The doctors made an incision in the patient's ribs and inserted the biopsy needle. With that needle, the doctors removed a small specimen of Schwab's lung and sent it in for laboratory analysis.
That Thursday, Schwab was released from the hospital. Schwab remembers that day because Marquette played Arkansas-Pine Bluff that night, and you can bet the Golden Eagles' special assistant was right there on the sideline.
"For me, the job was always good in a way because it gave me something to focus on other than the fact that I was sick," Schwab said. "I could come to work and just focus on the work."
That Friday, Dec. 21, it may have been hard for even Schwab to take his mind off of his illness. That was the day he got the lab results back. That was the day he found out the bad news. That was the day he found out he had idiopathic pulmonary fibrosis.
Schwab remembers that day because Marquette played Wisconsin on Saturday, and you can bet the Golden Eagles' special assistant was at that game too.
Idiopathic pulmonary fibrosis involves scarring or thickening of tissues deep in the lung.
It is a disease of the lower respiratory tract that damages the air sacs and leads to reduced transfer of oxygen to the blood. Over time, it causes widespread scarring of the lung.
"Idiopathic" means that no cause can be found. The disease is believed to result from an inflammatory response to an unknown agent.
Common symptoms include shortness of breath, decreased tolerance for activity and an advanced cough.
The disease affects more than five million people worldwide and more than 200,000 in the United States. However, due to misdiagnosis, the actual numbers may be significantly higher.
Idiopathic pulmonary fibrosis occurs most often in people between 50 and 70 years old. Average survival time, even with a lung transplant, is five to six years, though this varies greatly between patients.
The search for information on the disease and how to fight it began almost immediately.
There may be no crying in baseball, but in basketball, apparently you're not even allowed to sulk.
Over the next few weeks, Schwab and Darin Maccoux worked to find the best doctors in the country for treating this particular illness.
They came across a doctor named Keith Meyer, one of only a handful of doctors nationwide who was actively researching idiopathic pulmonary fibrosis at that time.
"Everybody said he was the best doctor for my disease, and he was located in Madison," Schwab said.
After the first meeting with Meyer on January 11, 2002, it was determined that Schwab would not yet qualify for a spot on the lung transplant waiting list.
"You have to be pretty sick to get on the list," Schwab said. "They don't just list everyone that comes in with a lung problem."
After confirming the biopsy results, Schwab tried another type of steroid. Unfortunately, the new steroids caused a negative side-effect that would set Schwab back for almost eight months.
In the short time that Schwab was on the steroids, he ballooned up to 337 pounds. Schwab was taking the steroids at such a high dosage that his stomach began to tear itself apart.
An endoscopy revealed that several ulcers had formed in Schwab's stomach as a result of the steroids he had to take four times a day.
Now, on top of taking the steroids, which made him hungry as it was, Schwab also had to take a handful of pills every four hours to combat the ulcers. Furthermore, he had to eat something each time he took the pills to minimize further damage to his stomach.
"There was no way around it I was huge," Schwab said. "I had to go buy some new clothes, that's for sure."
He also had to lose some serious weight. In order to be eligible for the transplant list, Schwab had to lose 112 pounds.
Schwab already was not feeling well most of the time. The desire to exercise just wasn't that strong when he was constantly running out of air while barely moving at all.
But really, Schwab had no other choice.
"The only alternative was to give up and wait to die," Schwab said. "That just wasn't an option. If I was never going to get a transplant, and the medicine was never going to work, I was going to keep trying and keep fighting as long as I could."
So Schwab stepped on the treadmill. The first day at the pulmonary rehab center at St. Michael's Hospital, Schwab managed only eight minutes of slow walking before he succumbed to complete exhaustion.
Eventually, he progressed to 15 to 20 minutes a day, but that was quite a challenge.
"They were pumping oxygen in me as fast as they could, but the body has a limit," Schwab said. "No matter how fast they turn up the oxygen, your body can only absorb it so quickly."
Over the next eight months, Schwab improved his stamina and shed his unwanted pounds. By August 2002, Schwab was working out for an hour a day, six days a week on both a treadmill and a stationary bicycle.
More importantly, Schwab had lost the 112 pounds and had been placed on the regional lung transplant list.
"Trey's will to succeed and live and get through his disease was no more exemplified than the fact that he lost all that weight. That was a pretty extraordinary thing for him to do," said men's basketball head coach Tom Crean. "He knew he had to get himself ready for a big fight, and that's exactly what athletics is all about, getting yourself completely prepared. Even though he didn't know what exactly he was getting ready for, he knew he had to get himself ready."
On the surface, Schwab appeared to be making great strides, but inside Schwab knew something was still not right.
Back in February, right as the weight-loss program had begun, Schwab also started taking an experimental drug called Actimmune, also known as Interferon-gamma.
Actimmune is a protein that regulates inflammation to fight off viruses. All human bodies contain the gene to make this protein.
By taking dosages of Actimmune, Schwab was flooding his body with the protein, hoping that it would stop the scarring in his lungs and prevent the need for a lung transplant.
"We were trying to alter the kind of inflammation pattern in Trey's lungs to stop the scarring, and initially, Trey appeared to be improving," Meyer said.
That improvement, however, stemmed more from Schwab's weight-loss than from the drug.
As the year wore on, every muscle and joint in Schwab's body began to ache, and the pain got progressively worse.
In February 2003, Meyer noticed that Schwab was having an unusual and continuous reaction to the drug, so he took his patient off the medicine. That was it. There were no more experimental drugs to try, no more types of steroids to take.
In need of a lung transplant, all Schwab could do now was wait.
One after the other, Dr. Robert Love was pulling ruler-length clots out of Schwab's chest there in the operating room.
Heparin, the medicine that was supposed to keep clots from forming in Schwab's blood system, was no longer an option.
For unknown reasons, Schwab's body had developed an antibody to Heparin, which allowed the clots in his legs to develop.
One positive aspect of using Heparin was that it had made the clots very sturdy, keeping them from breaking into small pieces when Love was extracting them from Schwab's chest.
Next, Love flushed out both of the transplanted lungs with saline solution to make sure that all of the clots had been taken out.
In what would seem to be an encouraging sign, Schwab's heart started beating again.
"I still thought it was unlikely that Trey would make it off the operating table alive," Love said. "The bypass machine was still doing all the work for his lungs and his heart. We had to take the machine off to test out how the heart and lungs would do on their own."