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Two-time double lung transplant patient says ‘thank you’ is never enough

Patient Stories

February 14, 2019

For Jen Weber, who has cheated death multiple times, helping others is “the only way to give back to the cosmic universe.”

As a child, Jen Weber had a somewhat lofty goal for a person with cystic fibrosis. She dreamed of reaching the age of 21.

In her mind, that would mean she would have had the chance to go to college and actually be an adult, even if for a short while.

She was living with CF, a debilitating genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys and intestine. Long-term issues include difficulty breathing and frequent lung infections. Decades ago, before treatment improved, the illness more often than not snuffed out young lives before they reached adulthood.

Weber, who was treated at Riley Hospital for Children, reached her goal and pushed well beyond it, thanks to advances in care and to her own motivation. Now 45, she not only went to college, she went to law school and works as an attorney for the Indiana Supreme Court.

But there’s so much more to her story. She’s been a cellist with the Carmel Symphony Orchestra for 21 years. She recently had a mini jam session with musician Jennie DeVoe to promote a concert. She’s run mini-marathons, traveled and biked in the CF Cycle for Life, and she started a foundation to help adult cystic fibrosis patients at IU Health University Hospital.

All this while undergoing not one, but two double lung transplants at IU Health Methodist Hospital. The first was in January 2010, the second in the fall of 2012. But three years ago, her body began to reject those lungs, so she is hooked up to oxygen day and night, and she undergoes photopheresis treatment once a month at University Hospital, a relatively new therapy designed to quiet the immune system that is attacking the lungs. And she takes “a zillion” pills a day, she said.

It’s her best hope now to prolong her life. A third transplant is not possible.

It’s a lot to absorb, but Weber has been dealing with illness her entire life. What she doesn’t do is allow it to define her life.

“I wanted to set some goals”

As a CF kid at Riley, she said her parents didn’t spoil her or treat her differently, except maybe on her 10th birthday, which she spent in the hospital.

It could be scary sometimes, she said. Mostly because she lost friends who also had CF or other illnesses. But it gave her perspective.

“You’d go to camp or go home and someone else wouldn’t because they passed away,” Weber said. “That leaves an impression. There were times I was frightened, but other times I thought ‘I don’t want that to happen to me,’ so I wanted to set some goals, try to get stuff done in life because I didn’t know how long I was going to be around.”

She enjoyed playing music because it allowed her to be more than a CF patient. She remembers on occasion her Riley doctor allowing her to leave the hospital just so she could perform in a school concert.

That love for music has filled her up through the years. She started playing piano at age 5, then picked up the violin. When she had to wear a brace for a while that prevented her from holding the violin, she moved on to the cello in high school.

“I never really thought that all these years later I would still be playing, but it has been my balance and my outlet. It was really my first anchor.”

Her historic Downtown home is filled with musical instruments and music-themed art. Besides a piano, cello, violin and guitar, she also has a ukulele and a banjo that was her great grandfather’s. Every day is a jam session in her house, even if it’s just her playing.

Born a preemie at Methodist

Weber likes to say she’s come full circle within IU Health. She was born three months premature in 1973 at Methodist, weighing 2.5 pounds. They kept her alive then, “and they’ve given me two sets of lungs to stay alive.”

She was 36 when she got her first transplant, after being on the wait list for four years.

“I had two great years with those lungs,” she said. “I started running half marathons, then I got really sick and just as quickly lost that set of lungs and was in ICU at Methodist for eight months.”

It was the sickest she’d ever been. She had a tracheotomy and was on a ventilator to help her breathe.

“I would never have walked out of that hospital the second time. I couldn’t speak, I couldn’t eat, I had a hole in my neck, and it was a monumental task to brush my teeth.”

But she did everything she could to requalify for the transplant list again. Over time, she walked while attached to the vent. She rode on a stationary bike in her room. She kept fighting to maintain her strength.

She was re-listed in September of 2012 and re-transplanted in October of that year.

She went back to work and back to living. She joined the board of the Indiana Chapter of the Cystic Fibrosis Foundation, and she founded Comfort Finders, which provides personal care and entertainment items to adult CF patients admitted to University Hospital. She even competed in the 2016 Transplant Games of America, winning a gold medal in mixed doubles bowling.

For Weber, the urge to repay the kindnesses she experienced was the impetus behind Comfort Finders. It’s a group effort, she said, with a board of five that includes two CF parents.

Adult CF patients often are hospitalized at University straight from clinic, sometimes many miles from home. Unlike children, they may not have loved ones who are able to be at the hospital around the clock or bring them the things they need. Things like cellphone chargers, pajamas, snack foods, even iPads.

“We make the in-patient environment for CF patients more comfortable so they can recover,” Weber said. “Nobody wants to wear a hospital gown for two weeks. I’m lucky,” she said, “if I go in, my neighbor can pick up something and bring it to me. But a lot of people don’t have that.”

Life is about more than doctors

Weber’s compassion for others while battling her own healthcare challenges is inspiring to Kim Fox, who has watched Weber tackle the ups and downs of her illness and now chronic rejection of her transplanted lungs. Fox is a transplant coordinator for Methodist and worked with Weber post-transplant each time.

“She’s an amazing person. Even if she’s not feeling the greatest, she’s still a get-up-and-go kind of person. I respect her for that.”

Managing a chronic illness is hard, but Weber decided early on that she was going to do whatever she needed to have the life she wanted. That’s one of the reasons she has chosen to live and work Downtown, so she is always within a mile radius of her healthcare team.

“I really think that’s worked for me. I’ve been still able to work full time, still able to engage with my care teams. If I’m not feeling well when I wake up at 7, I can say ‘I think I need a chest X-ray’ and can still make a meeting at 10.”

She loves her healthcare team, but she makes room in her life for much more than doctors.

“That can’t be your life because that’s not a life. You have to have enough other things besides going in X-ray machines and having photopheresis, as much as I like those people,” she laughed. “You have to have a good balance of things to keep you engaged and active. Because when you get the gift of a transplant, you can’t just say thank you.”

So she says yes when someone needs help – whether it’s doing legal work for the Cystic Fibrosis Foundation or playing music at a friend’s wedding.

“Well of course I’ll do it because it’s the only way I can give back to the cosmic universe that gave me this organ. That’s really how it works out I think. You just keep putting out that good.”

Fox said Weber’s heart and fortitude can serve as a model for others dealing with chronic illness.

“She always has a goal, and she doesn’t play the sick card. She knows we can’t give her another transplant, but she’s not one to say woe is me. She always looks more at the positive.”

For Weber, that attitude was inspired by what she saw around her as a little girl who spent her 10th birthday in the hospital.

“My family and healthcare team were really good about not making me feel like a patient with a capital P.”

Because she is much more than that. She’s a musician, an attorney, a traveler, a philanthropist and a friend.

–- By Maureen Gilmer, IU Health senior journalist
Email: mgilmer1@iuhealth.org

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