Rare, Nearly Fatal Illness Brings Shattered Family Back Together

Main Category: Transplants / Organ Donations
Also Included In: Cardiovascular / Cardiology
Article Date: 20 Feb 2009 - 2:00 PDT

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Judy and Scott Lorenz had been through one of the most difficult periods of their lives.

Their marriage of 30 years broke up, leaving them bickering and at odds over a host of difficult emotional issues. Their son, 30-year-old Scott, and daughter, Chris, 25, were having equally difficult times struggling with their own feelings of blame and resentment about the dissolution of their parents' marriage.

But then a near-fatal illness forced them to set aside all their differences and come back together as one. In August 2008, Judy Lorenz was diagnosed with primary veno-occlusive disease, an extremely rare form of pulmonary hypertension. Her heart and lungs had begun to lose function. Without a double-lung transplant, she would die within a year.

"Sometimes in life it takes something like this to bring people together. You hear it all the time, but it's true," said Lorenz as ex-husband Scott looked on during a checkup at Loyola University Medical Center where she received her lifesaving transplant on Dec. 13, 2008. "As much as the entire family went through, that was all forgotten."

Scott agreed and added that though they are both dating other people now, he, Judy and their children have never been closer.

"It's kind of funny because while she was in the hospital bed, me and her boyfriend were in the room together eating pizza and keeping her company. My daughter walks in, sees us and says, 'Oh, my God' I need to be in therapy now,'" Scott Lorenz said. "We all laughed. Strangely enough, this gave us a second chance."

That second chance would have not have been possible without the skills of Loyola's transplant team and the surgeon who performed Judy's surgery, Dr. Robert Love, professor and vice chair of thoracic and cardiovascular surgery and surgical director, lung transplant, Loyola University Chicago Stritch School of Medicine, Maywood, Ill.

"Dr. Love and his team did a great job. They've been very much an advocate for me and I think they do a great job for every patient," Scott Lorenz said. "Without Dr. Love's influence to get this transplant to go, it probably never would have happened because she was a very high-risk patient."

What made Judy Lorenz's operation risky was her physical condition. Her illness, primary veno-occlusive disease, left her almost completely incapacitated. High blood pressure in the arteries that supply the lungs is called pulmonary hypertension. In Lorenz's case, the hypertension involved the pulmonary veins that returned oxygenated blood to her lungs. The right side of her heart struggled to expel blood into her lungs. The cause is unknown. "When the veins inside the lungs get blocked, the heart on the right side gradually ends up doing more work than it's built to do," Love said, who has performed more than 600 lung transplants but only two that involved the disease the led to Judy Lorenz's operation. "It's an incredibly rare disease." The prognosis for patients with primary veno-occlusive disease is grim. Eventually, their heart and lungs fail as a package, said Love, who oversees a program that is days away from performing its 600th transplant, which will place it among only five transplant centers in the United States that have achieved that feat. "That's why patients like Judy become so debilitated that they can hardly move. They have no cardiac reserve, no heart reserve, no lung reserve," Love said. "They can't deliver blood into their body with oxygen in it because they can't push it through the lungs."

By the time of her transplant Judy Lorenz was on eight liters of oxygen a day and was so ill that she could barely lift herself from bed. The first decision the Loyola transplant team had to make was if a transplant was even possible.

"The complexity of her illness along with her poor physical condition made her a high risk for not making it to and surviving transplantation," Love said.

For various reasons, a heart-lung transplant was out of the question in Judy Lorenz's case, Dr. Love said. But the transplant team concluded that her heart wasn't damaged to the point that it wouldn't recover if a double-lung transplant was performed.

"She was referred to Loyola largely because of our expertise in treating the most difficulty of cases, such as one involving end-stage heart and lung failure as in Judy's case," Love said. "We're one of the few hospitals in the Midwest that has the expertise to transplant a patient in Judy's condition."

Today, Judy Lorenz is looking forward to returning to a normal life. She can't wait to hit the gym to start working out again, plans to return to her favorite activity, dancing, and is thrilled to be slowing regaining her independence.

"Before my transplant, I couldn't do anything. It was tough relying on everyone to stand me up, to get me to the bathroom, to wheel me around. Every little move I made I could feel my breathing," she said. "After the operation when they took the ventilator out, I was like, 'Whoa. I think I'm breathing without help.' Then I thought, 'This is great' because I hadn't had that in three months."

Loyola University Health System
2160 S First Ave.
Maywood
IL 60153
United States
http://www.luhs.org