'That I have to do it again ... it's just frustrating'

MARK JASTCZEMSKI | 22 | LUNGS | Waiting for six months

Imagine feeling like you'd just run a mile, fast, after 12 minutes of walking, slowly, on a treadmill.

That's how bad it gets sometimes for Mark Jastczemski.

Jastczemski's lungs work at only about a third of normal capacity. Without supplemental oxygen, he couldn't breathe. He has been on the waiting list for a new pair of lungs since November.

It's not the first time: Jastczemski already had one double-lung transplant 10 years ago. He has also had a bone marrow transplant and a kidney transplant -- all before he turned 19.

Now 22, Jastczemski said he thought his first lung transplant would be the last one he needed.

"That I have to do it again . . . it's just frustrating," he said.

His health problems began when he was just 4 and was diagnosed with leukemia. A grueling bone-marrow transplant followed. That, in turn, might be what triggered the deterioration of his lungs. Sometimes, donor tissue attacks the host's body.

After a lung transplant in 1998, Jastczemski's kidneys began to fail. His mother, Pamela Jastczemski, donated one of hers to him in 2001.

That was enough to keep his health under control until 2003, when his lung capacity began shrinking again. The culprit this time: a rare lung disorder called bronchiolitis obliterans.

Since then, it has been five years of ups and downs.

There are days when Jastczemski feels fairly normal -- and episodes when tackling a flight of stairs can leave him winded.

He was a student, until recently, at Dominican University in River Forest, majoring in food-service management. But, tired of the stares he'd draw, he decided not to return for the spring semester.

"I just didn't want to be around everybody. It made me feel uncomfortable," said Jastczemski, who, at just 98 pounds and 5 feet 1 inch, looks about half his age.

And a college campus is a risky place for someone whose immune system is suppressed by drugs to keep his body from rejecting the transplanted lungs he already has.

Jastczemski moved back in to his parents' Park Ridge home last fall. He fills his days with cartoons, "The Price is Right" and the popular computer game "World of Warcraft."

He tries to keep fit, lifting weights and walking on the treadmill. He can go for a few minutes at a time before growing tired.

For someone who takes 25 medications a day and has been on oxygen full time for seven months, Jastczemski talks about his condition with matter-of-fact calmness. "I've been through so much, I just kind of don't think about it all," he said.

His parents try not to obsess about where their son is on the waiting list on any given day. They know he could move up -- if he gets worse.

"It'll drive you crazy if you worry about it every day," said his father, Alan Jastczemski.

There's no guarantee a second lung transplant will be more successful than the first, said Dr. Charles Alex, medical director for lung transplants at Loyola University Medical Center.

"One of the biggest issues we face with transplants is chronic rejection," said Alex. "It can be unpredictable."

But 18 years in and out of hospitals for their son has taught the Jastczemskis to "manage their expectations," Alan Jastczemski said.

"We're just hoping for a good deal this time," he said.

Monifa Thomas

To join the Illinois Organ/Tissue Donor Registry, visit Lifegoeson.com or call (800) 210-2106 and put your name on the confidential list, which is only released to organ and tissue procurement personnel and medical examiners after all lifesaving efforts have failed.
Gift of Hope, an Elmhurst-based non-profit, also answers questions about organ donation and gives information on how to become an organ donor at Giftofhope.org