Family House Diaries: It’s All About the Journey

Written by Elizabeth Swaringen for the UNC Medical Center News Office

Thursday, June 3, 2010

CHAPEL HILL -- For Sherri Jutz of New Bern, it’s all about the journey, the new relationships built along the way and the strengthening of old ones with every step.
     
While her non-Hodgkin’s lymphoma is in remission, a diagnosis of myasthenia gravis has robbed the 42-year-old wife, mother of three sons ages 15 to 20, and first-grade teacher of the energy she needs to do even the simplest tasks and to enjoy leisure pastimes.
    

Folding laundry is too taxing. Sometimes her energy gives out mid-chew during a meal.  Volunteering at church and with the Havelock High School marching band is on hold.  She especially misses sailing trips with her husband.
   
“I am not angry about this, but I am accepting of what is, and I’m grateful for what I have,” said Jutz.  “I’ve placed my faith and trust in the Lord and in my medical team, and I’ve met some incredible people every step of the way.  I always have my husband’s shoulder to lean on.  I don’t have to worry about him, our sons or our dogs, which enables me to focus on what I need to do.”
     
Myasthenia gravis, from Greek and Latin words meaning “grave muscular disorder” is a chronic autoimmune neuromuscular disease most commonly characterized by weakness in voluntary muscle groups that worsens with even slight activity and improves with rest.  There is no known cure for the disease that affects 20 out of 100,000 people in the United States.
     
Common symptoms include a drooping eyelid, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing.
     
Medications and treatment interventions allow most, but not all, patients to lead full lives.  That’s the goal for Jutz who is at UNC Hospitals weekly to receive plasmapheresis or plasma exchange, said James F. Howard Jr., MD, distinguished professor of neuromuscular disease and professor of neurology and medicine at the UNC School of Medicine and chief of neuromuscular disorders in the department of neurology at UNC Hospitals, and leader of Jutz’s team.
     
“With myasthenia gravis, the body attacks itself because there is misrecognition of the junction where nerve impulses to muscles connect,” Dr. Howard said.  “Our goal for Sherri is to suppress selected aspects of her immune system so that the nerve-muscle communication can be established, her symptoms of weakness go away and she can resume normal function.  We want her health back to the way it was before her diagnosis.”
     
The oral medication Jutz takes for her condition gains its effectiveness over time, and the plasma exchange was added as a boost and temporary treatment to keep her out of the hospital, Dr. Howard said.
     
“It’s like changing the oil in your car,” Dr. Howard said.  “We remove her blood and separate it into its components.  The abnormal antibodies due to the misrecognition between nerve impulses and muscles float in the blood serum and we remove them, much like skimming cream off milk.  Her blood is returned to her body.  The exchange can help boost the immune system, but the effect is generally short-lived because the production of the abnormal antibodies continues.”
     
While in Chapel Hill for the twice weekly plasma exchanges Jutz stays at SECU Family House, a 40-bedroom hospital hospitality house minutes from UNC Hospitals.  Family House provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.
     
Jutz usually arrives the day before her plasma exchange to rest up for the two-hour procedure and often stays the night after her second one because she’s exhausted.  She has a double-port installed in her chest for the ease of removing blood from and returning it to her body.
     
“I really love the [SECU] Family House and the people – both staff and other patients and their families – so much that I have a lot of trouble not visiting with everyone,” Jutz said, adding that she’s made new friends from New Bern, Havelock and Morehead City with whom she would not have crossed paths while home.
   
“My problem is that I really need lots of rest, and it’s hard to leave the kitchen because the inspiration and connections that are made and shared through conversations and laughter around the dinner table and in Scrabble games afterward are just so therapeutic,” Jutz said. “These conversations wouldn’t be taking place in any other setting.  It's life changing!”
   
The therapeutic relationship building has extended to the plasmapheresis team she sees weekly and the vascular surgery team at UNC Hospitals, the latter responsible for the placement of her double-port.
   
“I love seeing how these individuals work together as teams, not only in what they are experts with from a medical perspective, but how they work within the team as individuals to put patients at ease and help them stay calm,”  Jutz said.  “They explain so well exactly what they are doing and why, and they try to make it fun.”
   
Jutz said the hardest part of the disease and its treatment is retraining herself to let others do things for her. 
   
“My husband Bill and our sons keep me in line, and my neighbor Vicki has graciously taken on some responsibilities,” Jutz said.  “This journey started in 1998 and will be going on forever.  Bill has helped me keep my faith strong, giving me inspiration and hope to carry on.  He and our sons have done a great job taking charge of shopping, cooking, regular household chores.  I wouldn’t be able to find peace with all this without them.”
     
Still, one of the hardest things for Jutz was following doctor’s orders to take a leave of absence from the job she loves.  
   
“By attempting to stay in the classroom, she was putting herself in a state of complete exhaustion,” Dr. Howard said, recalling the difficulty of breaking the news.  “If she gets too sick because she’s overdoing it, then she’s helped no one including herself. 
   
“Clearly she didn’t like it, and tears flowed.  But she has accepted what we are dealing with and understands the aspects and potential risks and benefits and long-term goals.  She’s placed her trust in us, and she has been a trooper in following up and doing everything that’s been asked of her.”
   
“I know that people learn by experience, and I am learning to let others take over and do what needs to be done,” Jutz said.  “I just want to be doing all the normal things that come with living.   And by sticking to the plan, I have faith that it will take me where I’m meant to be.”
   
Both Jutz and Dr. Howard agree that myasthenia gravis is too often under diagnosed and hope that by sharing her story they raise awareness about the condition, its diagnosis and treatment.  June is Myasthenia Gravis Awareness Month and the Myasthenia Gravis Foundation of America (www.myasthenia.org) is a valuable resource for patients and medical professionals alike.  Dr. Howard is the author of several chapters and editor of the foundation’s manual for health care providers.