Karen couldn’t tell you the cause of the lung disease that completely changed the course of her life. That’s because there wasn’t one. Karen was diagnosed with sarcoidosis, which has no definitive cause. For many, sarcoidosis clears up on its own. For Karen, it led to the complete deterioration of her lungs and heart.
A devastating diagnosis
Karen went to the doctor after she noticed the skin near her appendix hardening. The diagnosis was surprising and scary. The skin changes were an early sign of inflammation due to sarcoidiosis, an inflammatory disease affecting several organs of the body.
But Karen remained symptom-free until waking up several years later with mucus in her chest and trouble breathing.
Penn Medicine pulmonologist Morris Swartz, MD delivered the devastating news: The sarcoidosis had spread, resulting in scar tissue growing in Karen’s lungs. To breathe from now on, she’d need oxygen support.
Counting breaths
Three years into oxygen support, Karen was rushed to the emergency room.
“I got really tired; I couldn’t walk. It basically came overnight,” she remembers.
The scarring and lack of air getting to her lungs had led to pulmonary hypertension, abnormally high blood pressure in the arteries of the lungs that was forcing her heart to work harder than normal. Karen’s heart muscle was weakening.
“One more day and I probably wouldn’t have woken up,” says Karen.
Karen left the hospital two weeks later with an oxygen cart, a chest catheter, and a canister that administered medication directly into her heart. She would have to wear these for the rest of her life. But living became difficult. Requiring 10 liters of oxygen per minute at all times, Karen could rarely leave home. She had to give up her career.
Karen’s lung transplant pulmonologist at Penn Medicine, Vivek Ahya, MD, explained that her five-year prognosis without transplant didn’t look good. Still, Karen was not ready to say yes to the transplant. She experienced a change of heart during one of her rehabilitation appointments.
“I saw people [who had just had a transplant] come in. They were maintaining themselves well after the transplant. I was just getting sicker. I knew there was no cure.’”
Karen agreed to be listed for transplant.
A new beginning
After Karen’s incredibly hard work and perseverance while on the transplant list, she received the long-awaited call: A set of donor lungs was a match.
Given how sick Karen was at the time of transplant, there were complications. Karen slept in an induced coma for 16 days to allow her body to heal and accept the new lungs.
“Mommy’s awake!” were the first words Karen heard when she woke up.
Dr. Edward Cantu III, the lung transplant surgeon at Penn Medicine’s Transplant Institute, told her, “You were not going anywhere. I was going to make you okay.”
And she was, finally, okay.
Breathing easy
After her lung transplant, Karen had a long road to recovery. But the hard work paid off. Finally, she could breathe easy.
“I can do just about everything I could before I got sarcoidosis,” she says. “I can go up steps, walk, hold my grandbaby.”
Karen’s advice to others on the transplant waitlist: “If you’re afraid, speak to someone. Penn Medicine’s Lung Transplant and Pulmonary teams have a wonderful support system, from the doctors to the nurses to the support groups to the patients. Speak to a specialist, take the chance; you won’t regret it.”
An empty oxygen tank sits in Karen’s house as a reminder of the past and as a motivator to keep herself healthy.
