Joshua Nevala: Learning to live with ARVD PDF  | Print |  E-mail
Written by LOREN UNDSETH   
   David and Tammy Nevala, along with their children, Zach, Josh, and Moriah, had lived in the Sebeka area all their lives until they relocated to Missouri last summer. While no one in the family liked leaving their home and family here, their move completely changed Josh’s life in an unexpected way.

    Since the family’s move to Missouri, Josh has been diagnosed with Arrhythmo­genic Right Ventricular Dysplasia (ARVD), a progressive heart disease that has no cure, Tammy says that she firmly believes everything happens for a reason. If they had still been in Sebeka, Josh’s heart disease would likely have not have been diagnosed and could have been fatal for him.

    His family feels that Josh is a miracle: It’s a miracle he was diagnosed and treatment could begin, and most of all that his family did not lose him to the disease.

    Josh, who is now 14, had been a normal, active kid who enjoyed sports, hunting, fishing, and tubing the Crow Wing River. He attended school and participated in wrestling and football at Sebeka School until his family moved to Missouri during the summer of 2009. For Josh to play sports at his new school, he had to have a complete physical. During the physical, the doctor thought he heard an irregular heartbeat and suggested that they have Josh checked further.

    Josh attended a football strength and speed training the day after his physical, but it left him exhausted. Tammy, who is a nurse, listened to his heart a number of hours after the practice ended, and could hear that it was very irregular and erratic and she took him to a nearby emergency room. He was given an EKG and they confirmed that he had a highly increased heart rate which they were able to control with a magnesium drip. Josh was referred to Children’s Mercy hospital, a pediatric medical center, in Kansas City.

    Josh was tested by both a cardiologist and an electrophysiologist at Children’s Mercy. After running many tests, the specialists agreed that it appeared to be ARVD. They had the diagnosis confirmed by ARVD specialists at John Hopkins Hospital in Baltimore. The final step in verifying the diagnosis was to perform a heart catheter procedure.

    On October 14, Josh had the heart catheter procedure at Children’s Mercy by the specialists who performed an angiogram, electrical mapping of his heart to see where his irregular beats were coming from, an ablation of some scar tissue and a heart biopsy for genetic testing. The surgery took seven hours.

    After the procedure, the doctors advised that Josh should have a defibrillator put in, because ARVD puts him at high risk for sudden cardiac death syndrome. He will be having a follow-up check up on December 3, and the defibrillator implantation is scheduled for December 9 at Children’s Mercy.

    Josh is on the national registry for ARVD. That will allow him to be evaluated for new treatments and is a preliminary step for a heart transplant. If his condition worsens, a transplant would be the only option left.

    David and Tammy have two other children, Zach, 18 and Moriah, 11. They are both at risk for ARVD.

    There is no cure for ARVD. It is one of the leading causes of death in young athletes, with 20 percent of all deaths of high school age athletes being attributed to it. It is considered a progressive disease, meaning the symptoms will worsen over time. The treatment consists of controlling and preventing sustained ventricular arrhythmias, which can lead to death. Antiarrhythmic drug therapy is the main course of treatment. Josh is taking the beta-blocker medication Sotalol to help control his symptoms.

    Even though Josh is currently in school and symptom free, his life has completely changed. He can no longer play sports. He may have to limit his hunting and fishing. His health has to be monitored and he will have checkups every six months. Those are huge changes for a 14-year old.

    Both David and Tammy (nee Pickar) are originally from Sebeka and Nimrod and both are graduates of Sebeka High School. They left the area because they found work Missouri, but are continuing to look for work in this area and would like to move back to their house here.

    The Nevalas will be spending Thanksgiving at their house outside Sebeka, and look forward to seeing family, friends and neighbors at the chili feed for Josh. Tammy commented that she was amazed by the outpouring of concern and support they have received from people in Sebeka and the area.

    The chili feed, auction and raffle fund raiser for Josh that will be held Saturday, November 28. The chili feed will be held in the Nimrod Hall from 4 to 8 p.m., with the auction and raffle at J&J Bar & Grill in Nimrod beginning at 7 p.m. Proceeds from the fund raiser will go to help pay for Josh’s medical expenses. Donations are also being accepted at First National Bank in Wadena.