Marion Marin, the 56-year-old wife of Los Sarapes Chalfont co-owner Luis Marin, recently underwent a life-saving lung transplant after being diagnosed with systemic scleroderma.
Scleroderma is a rare autoimmune disease that causes inflammation and thickening of the skin and other parts of the body. Systemic scleroderma, or systemic sclerosis, is a specific, deadlier type of scleroderma, which can damage internal organs over time, such as the lungs, but also the heart, kidney or blood vessels.
Marin hardly ever got sick prior to March of last year, when she began feeling a persistent chest tightness. When the tightness persisted through the entire month, she eventually went to see a doctor, who assumed the pain was from pneumonia. The doctor prescribed antibiotics, but they did little to help.
As the months went by, Marin’s symptoms grew worse. By May, even moving her limbs around and taking showers felt exhausting. She had also begun to lose weight, because of scleroderma affecting her esophagus and making it harder to swallow food. It was around this time that family members urged her to go to the hospital, but at the time, Marion didn’t believe she was sick enough to warrant a hospital visit. She continued seeing regular doctors.
Eventually, in late August, despite one of her doctors saying she was worrying too much, Marin went to the emergency room. There, they not only diagnosed her, but found that her lungs were hardening because of her scleroderma. She spent the first five days of September there before being sent to a pulmonary doctor, who told her to come back in 30 days.
Not satisfied, her husband pushed to get her in touch with Dr. Gerard Criner from Temple University.
By the time of her second appointment with Criner, Marin’s lung health had begun to rapidly deteriorate. Criner told her she needed to get on the transplant list as soon as possible. The news shocked her.
She joined the transplant list in March and waited until September to get her lung transplant.
Her hospital stay following surgery was an incredibly draining time made somewhat bearable by support from her family. Though they were unable to visit her in the ICU, she would video chat with them every day she could. Additionally, her husband, children, parents and sisters worked together to make a quilt for Marin, covered in photos of her and her family, so that she wouldn’t feel alone.
“I tacked [the quilt] up in my room on the wall, so when I couldn’t have visitors, I saw all their faces right there, every day,” said Marin, “and it was the best thing ever...and they were with me. They were with me the whole time.”
This time of year she would normally be at Los Sarapes, enjoying the holiday atmosphere and socializing with the restaurant’s many regular customers. This year, due to post-surgery risk of infection, she needs to stay at home.
Marin does not dwell on this. The experience has given her a new appreciation for the little things in life, like walking to the mailbox, seeing her family, and just being able to take off her breathing mask to wash her face.
During her interview with the Herald, Marin recounted how she felt being able to sing in the car for the first time after her surgery.
“I haven’t sang in a year,” said Marin, “because you just don’t have the air in there.”
Marin recounts this exact story on both her YouTube and TikTok accounts, where she began sharing everything she has been through.
“The other day I got to sing a song in the car that I never got to do for a year. It brought tears to my eyes,” she said. “It was emotional, because you don’t realize the things you couldn’t do before that now you can, and I’ll never take it for granted again.”
Despite her lung transplant being a complete success, Marin still has many difficulties to face. For one, she is battling with her insurance provider to pay for her required infusions. And to make matters worse, her new lung is only estimated to be good for another 5 to 15 years.
In spite of it all, Marin’s thoughts are centered on the here and now, focused on making fond memories and getting the most out of the time she has.
“I’m not a very religious person,” said Marin, “but I believe the inevitable will happen when it happens.”
“If I’m meant to live another 15 years, that’s fabulous,” she continued. “If I’ve only got five years, three years, whatever it is, my bucket list has changed so much. Before, it was like, weird things. Now it’s just like, ‘I want to walk here,’ ‘I want to go to a fitting room and try on clothes,’...‘I want a cooking class in Italy,’ ‘I want to do this.’ I want to experience everything I can, as much as I can. Because you don’t know.”
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