When this came in the mailbox on Sunday, April 10,I couldn’t put it down. The photo made me nauseus, but hey, this girl (just like me!) lived!
I don’t know her personally but we’re both fighting through liver diseases (and transplants), trying to go to nursing school. I know she’ll be great!
Here it is to all of you non-Akron area readers:
Finally and happily, Marie Pasuit has that much-awaited light at the end of her frighteningly long tunnel.
That peace of mind came last fall for the 21-year-old, petite cross-country runner from Stow in the form of a liver transplant. And not a moment too soon. Marie, the oldest child of Mark and Lisa Pasuit, was diagnosed during her junior year at Stow-Munroe Falls High School with end-stage liver disease. I caught up with Marie and her family recently when they contacted me [the author] about donating the vast amount of medical supplies she no longer needs. The game changer for Marie started out rather innocently. ”I started feeling like I had the flu one weekend,” she recalled. Then things got worse, and she regurgitated blood. Her parents whisked her to the ER at Akron Children’s Hospital. ”It was a rough night to say the least,” Lisa said of her daughter’s plunge into this abyss. What came next would be even more mind-boggling. ”An incredible doctor, Dr. [John] Fyda [a pediatric gastroenterologist], after a ton of tests, narrowed it down to a liver disease,” Lisa Pasuit said. ”Then there were more tests and a biopsy.” The diagnosis? Autoimmune hepatitis with macronodular cirrhosis. A second biopsy at Cincinnati Children’s Hospital confirmed the findings. On her 16th birthday Marie was placed on the transplant list. ”This hit us so quickly, we had no time to think, to react,” Lisa Pasuit said. ‘‘I don’t know how we survived. I think the only way we made it through is that after a while, Marie didn’t seem sick.” Incredibly, Marie was still able to participate in cross-country and 800-meter events. ”Running always came easy,” Marie said. The situation remained relatively stable for a couple of years. Then ulcerative colitis an inflammation affecting the large intestine and colon hit during her freshman year of college. ”The colitis was a lot harder than the liver disease,” Marie said. She had to forgo running and even going to classes. In fact, she was in bed most of the time. ”It all went downhill real fast!” Marie recalled. By last summer she was feeling listless and experiencing back problems. But she was determined to support her younger brother Ryan, who was playing in a baseball tournament near Columbus. So she accompanied her parents on the trip. At the hotel, however, her pain got progressively worse. Never one to cry wolf, Marie asked her parents to call an ambulance, which took her to a hospital in Dublin. ”Doctors there thought it was a bowel obstruction and that Marie was just a drama queen,” her mother said. ”It was NOT a good experience.” At the advice of doctors at Cincinnati Children’s Hospital and Dr. Fyda of Akron Children’s, Marie was transported to Cincinnati. ”She was just a mess!” was how Lisa summed up her daughter’s condition. Further complicating the situation was a newly found clotting disorder. But she improved and was able to return home. When her 21st birthday came along, Marie was feeling so miserable that she returned to the ER at Akron Children’s. A short time later she was on a helicopter, bound for Cincinnati Children’s Hospital, where she underwent immediate surgery for a bowel perforation. ”I got an ostomy [a surgical opening for the elimination of body wastes] as my birthday present,” Marie said matter-of-factly. A few steps forward and few steps back was how Lisa described her daughter’s medical journey, adding, ”Slowly she was getting yellow and green.” But ”one thing at a time,” was how Lisa said she and husband navigated the never-ending land mines. Lisa on leave from her job as a gymnastics teacher at Little Leapers in Hudson never left her daughter’s side during the several months she was hospitalized. Mark Pasuit, employed by J.R. Machining in Hudson, was there with his daughter as often as he could be. And ”it was always good when her brother could come down,” Lisa said. Marie was failing fast. Then out of the blue, Lisa recalled, ”I got a call at 6 a.m. on my cell phone… . A liver had been located. All they said was that it was a ‘young, healthy liver.’ That it was an hour flight away and a perfect fit!” Marie’s transplant surgery took place Sept. 23 in Cincinnati, and ran 14 hours. There are so many people to thank in addition to the donor’s family: transplant surgeons Drs. Maria Alonso, Jaimie Nathan and Greg Tiao; gastrointestinal specialist Dr. William Balistreri; and transplant coordinators Becky Rengering and Susan Seyfang. And everyone who continues to support the Pasuits with fundraisers and prayer. ”It was amazing how quick the recovery was from the transplant surgery compared to her other surgeries,” Lisa said. Still, there were complications. ”She had a hematoma between the lining and the new liver,” her mother said. In time that cleared up, too, and Marie was discharged on Oct. 14. She and her mother moved to an apartment not far from the hospital, where they remained until a week before Thanksgiving. It would be three months before those coming in contact with Marie stopped wearing masks. ”Of course, Purell was in abundance,” Lisa said of the cautions implemented in the wake of the H1N1 concern. Marie is not out of the woods yet. But she and her close-knit family are breathing a sigh of relief. ”We’re past the six-month mark when the risk of rejection is not as high,” Lisa said. Marie’s ostomy was reversed in January. The journey back to normalcy continues to be uphill, including Marie relearning to walk. She spent so much time in bed that her leg muscles began to atrophy. Marie still has a passion for running but had to give up her athletic scholarship. Even so, she plans to attend Walsh University in the fall to pursue a degree in nursing. Lisa who is buoyed by the passage of the health-care bill estimates her daughter’s protracted crisis has easily cost $2.5 million in insurance costs The family is fortunate to get the anti-rejection medications her daughter will need the rest of her life at a greatly discounted price. The timing of Marie’s story coincides with April being Organ Donation Awareness month. ‘‘Everyone needs to understand the importance of becoming an organ and tissue donor,” Lisa said. ”It is a lifesaving decision!” The Pasuits take every opportunity they can to underscore its importance. They even named their Weimaraner puppy ”Livvy” to celebrate Marie’s new liver.
This story in the local paper by Jewell Cardwell touched my heart the instant I read it. It’s still on my desk and reminds me to carry on (2010, April 12). A runner in high school who won a scholarship, Marie is preparing to go back to college, study nursing. The Akron Beacon Journal. pp B1-4.
Marie, if you’re out there, shoot me an email. I’d love to hear from you! agoodwin2010 (at) gmail (dot) com 🙂