UNC Health Talk

Family House Diaries – Wesley Telsrow: Radiating a Gratitude for Life and Living It

Media contact: Tom Hughes, (919) 966-6047, tahughes@unch.unc.edu

Wednesday, Dec. 15, 2010

Written by Elizabeth Swaringen for UNC Health Care

CHAPEL HILL, N.C. – Three little elastic bands on Wesley Telsrow’s right wrist tell the short version of the story.

“The yellow one is a set of lungs, the red is the CF rose and the blue is the school [hospital] where I got new lungs,” said Wesley, gently removing each band and letting them individually reveal their shapes.

Scars on Wesley’s torso and tummy tell the longer version of the story.

Wesley, 22, from Grover, in Cleveland County, N.C., was born with cystic fibrosis (CF), a life-shortening inherited disease that causes abnormally thick, sticky mucus to build up in the breathing passages and in the pancreas, resulting in breathing difficulties and related digestive system issues.

At birth, Wesley was among the 20 percent of CF infants who also have meconium ileus, an abdominal obstruction caused by overly thick meconium, a substance present in the intestines at birth. Surgery cleared the obstruction when Wesley was three days old.

Despite CF, Wesley has never excused himself from life. He played a variety of sports – football, baseball, basketball, soccer – and excelled, making the all-star baseball team three times and finishing sixth statewide in swimming and diving. He raced motor-cross competitively and still says his best moves were on a trampoline at age 7.

“The only thing CF took away was my ability to work,” Wesley said, adding that as a teenager he shadowed his Dad, Sam, an electrician, then worked at a Cajun restaurant, for UPS at the Charlotte airport and enjoyed landscaping until his breathing worsened in 2009.

He lived at UNC Hospitals nearly a full year before he received a double-lung transplant on Aug. 9, 2010, or 8-9-10 as Wesley refers to his new birthday. Finally, for the first time in his life he could sleep lying down rather than sitting up and laugh without coughing.

“I will always remember that first breath while conscious after the transplant,” Wesley said. “I felt an immediate, almost indescribable difference. I was breathing with unbelievable ease. My only regret is that I’m really going to have to work out now to keep my six-pack abs, which were the byproduct of all the deep, hard coughing you have to do with CF.”

Wesley was released to SECU Family House on Sept. 27 for the mandatory three-month post-transplant stay. SECU Family House is a 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers. His mother, Amy MacMullen, stayed there while Wesley was hospitalized.

“We are thrilled with the place,” MacMullen said. “People are so willing to help each other. We’ve made a lot of friends here. It’s a real place of comfort.”

Wesley resumed jogging seven weeks post-transplant. Scar tissue from the surgery he had as an infant unexpectedly triggered another bowel obstruction, necessitating surgery in early November. The scar, from sternum to pubic bone, joins the horizontal transplant scar across his chest, giving him a permanent T, as in T for tough.

Today, he’s the picture of health, although severe acne, a side effect of the post-transplant steroids, makes him look more like a budding adolescent rather than a young adult. He looks forward to resuming his studies at a local community college with an eye towards law enforcement.

“Wesley’s been the model patient, incredibly motivated and proactive, the ideal candidate for this surgery,” said Nirmal K. Veeramachaneni, MD, assistant professor in the Department of Surgery in the Division of Cardiothoracic Surgery at the UNC School of Medicine, and Wesley’s transplant surgeon. “He’s exactly the person you would want to counsel other patients with chronic disease.”

Dr. Veeramachaneni downplays his own role in Wesley’s new lease on life, giving more credit to the multidisciplinary pulmonary team that manages Wesley’s care.

“The literature shows that patients who reap the maximum benefits from lung transplant surgery are CF patients,” Dr. Veeramachaneni said. “However, it’s not a cure-all, and often the patient is trading one set of problems for another. But we know the outcome is better when there’s a strong multidisciplinary team like we have at UNC.”

“The surgery really is the first step in moving on with the rest of your life,” said Laurie McDonald, case manager and clinical social worker on the lung transplant team. “Those first six months post-transplant are intense as the patient adjusts to a new normal.

“Wesley was euphoric after the transplant,” McDonald said. “There is a radiance about him that everybody loves. He is genuinely grateful and wants to be there for other people who are awaiting their own transplants.

“There are certain things we on the team can say and do based on our professional experience, but only when you have been there, like Wesley, can you speak with real expertise.”