Fighting Spirit

By Martin Haro '05

Most people would think it inconceivable to endure – in one lifetime – two liver transplants, a stroke and spinal cancer, but Patricia Scott Ph.D. ’97 defies the odds.

Not that she would say so herself. When speaking about her life’s highs and lows, Scott feels, admittedly, a little self-conscious.

“It almost sounds like a soap opera, like all of this couldn’t have happened to just one person – like I’m making it up,” she said. “But I’m not.”

Scott, 53, is an associate professor and chair of the occupational therapy program at FIU. She is also a survivor who, in the face of failing health, learned that with enough certainty and determination she could adapt to whatever life had in store for her.

She holds tight to this lesson and shares it with her students and fellow therapists in the College of Nursing and Health Sciences. There, Scott and her staff work with individuals suffering from various disabilities. Among their patients are those with chronic disabilities, children with autism or troubled youth and adults.

The goal, she says, is to enhance and support their daily function, health and development by helping them adapt to their environment and improve their functional performance.

“People tend to believe that we get patients jobs, when, in fact, that is not what we do at all,” she said. “We enable individuals to cope with all aspects of their occupations, be it by valued participation in recreational or social activities or learning how to take better care of themselves and function in society.”

Scott says the OT program seeks to teach students how to really take care of their patients by listening to their needs. Then, through rehabilitation and treatment, the therapist can help patients cope with the social and emotional weight of their disabilities.

“I get really impatient with people generalizing about those with disabilities,” she explained. “I want my students to remember that patients are people with names, not just conditions to be treated. I want my students to remember that there are people behind the problems and that you can’t begin to understand those problems without understanding the people first – their fears and hopes.”

Scott herself has had to face her fears and learn how to adapt after more than two decades of serious medical troubles.

“Through it all, my biggest fear has always been not being able to speak, not being able to teach,” she said.

One of the most dramatic instances of this came in 1997. She recalls being in the hospital after her liver failed for the first time and wanting to make a phone call. She knew who she wanted to call and remembered the number. But when she picked up the phone, she could not successfully dial.

She was affected by a neurological disorder called apraxia brought on by the presence of toxins in her brain – a result of the liver failure – which rendered her unable to carry out a familiar movement, despite having the desire and the physical ability to perform it.

“Dealing with everything I have has made me a better teacher,” she said.

A life less ordinary

Scott became aware of her health problems in 1980 through an employee fitness program medical screening; one of the tests showed high liver enzymes. She was 27 and physically fit, yet something was “not normal.”

Two years later, after a series of tests, she was diagnosed with chronic autoimmune hepatitis, which affected her liver and caused her to become sluggish every time it would get inflamed. “I felt like I was hit by a truck every time that happened,” she said.

Her subsequent ailments have included a liver transplant in 1998 (after more than 15 years of managing her condition), a stroke in 2000 and spinal cancer in 2002 (a byproduct of the strong immunosuppressant regimen she was on to prevent organ rejection). She needed a second transplant in 2003 after the chemotherapy treatments she was on caused her liver to go into chronic rejection.

Nevertheless, Scott does not see herself as “sick.” She credits this frame of mind – always believing that she would get better and not stressing over unnecessary matters (stress is a trigger for autoimmune disease) – for her current well-being.

Mere months after her stroke and still undergoing treatment for her transplant, she competed in bowling and a 5K run in the 2000 Transplant Olympics. In 2004, she competed again, this time bringing home three medals in swimming (she gave one to her doctor).

Once in a while, she cannot help but wonder if there will be any more illness in her future. “It’s the battle scars,” she said. This was most pronounced when she suffered her stroke – which was a medical error.

“I went into the hospital because I needed a catheter put in place,” she explained. “The doctors made a mistake and misplaced it, which caused the stroke. Everyone says I should sue them, but I won’t. It was a mistake. These are the same people who saw me through the transplants and kept me alive in the first place.”

Making a difference

Today, Scott is as healthy as can be. Her lab results for the last two years have been normal and she makes sure to get enough sleep and eat well (she cannot have sushi because of the bacteria – though she admits to really missing ahi tuna).

“Everything is okay now,” Scott said. She is thankful for the “awesome” support she has felt from her husband Karl and the entire FIU community (of which she has been a member since 1988).

Scott says she does not allow every day stuff to get he worked up. “I don’t let myself get stressed out.” This take-charge attitude has contributed not only to her good health, but also to her becoming an ambassador to the difficult issue of organ donation and transplantation.

“The goal is to put a face on this issue,” she explained (the first successful kidney transplant was in 1954, so organ donation and transplantation is a fairly new procedure). “We need to involve donors and recipients of organs to make this less a difficult subject for people to discuss with their families and think about for themselves.

There are many fears and misperceptions about organ donation and transplantation, she says. “I believe that by raising awareness and discussing this matter more openly, within 15-20 years, organ donation will be considered ‘normal’ in our society instead of an odd practice.”

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