Jim Johnson continues to serve his community as a Mt. Laurel firefighter. Now he is hoping the community can help him in the fight to save his wife’s life.
Becky Johnson was diagnosed with a rare disease of the pancreas in 2004 and has reached the point now that an experimental surgery may be the only thing left to improve the quality and ultimately save her life. For the Johnson family, this has been a dream for more than 10 years.
In July 2002, after experiencing consistent pain in her torso, Becky had her gallbladder removed.
“It’s not unusual for people to have gallbladder issues so we didn’t think it would be any issue after it was removed,” Jim said. “But when she experienced the same sharp pain not too long after her surgery, that’s when we knew something else had to be wrong.”
Months of tests and hospital visits followed but no answers were given to the Johnsons. With more and more time, the condition worsened. Becky was hospitalized the day before her and Jim’s wedding, but true to her nature, she walked down the aisle.
“She said ‘I am not missing our wedding,’” Jim said “She’s a fighter, just so strong, so the next day she signed herself out of the hospital and was at our wedding.”
More doctor visits and testing but still no answers. At that point, her surgeon suggested an unlikely source — a rare disease called Pancreas Divisum with Sphincter of Oddi Dysfunction.
“The surprise was her age. I mean she was 23–24 years old when she was diagnosed,” Jim said. “The disease only affects something like 1 percent of the population and they are mostly much, much older.”
The disease cuts off the pancreatic ducts that release enzymes into the digestive system, which causes severe pain and chronic pancreatitis. The disease is hereditary and many people have a strain of it; however it remains dormant. Doctors have found that removing the gallbladder may trigger the disease.
“Local doctors originally gave Becky five to seven years to live and that it wouldn’t be a good quality of life,” Jim said. “I’m a stubborn guy and that was not an acceptable answer.”
After researching and digging, they were referred to a doctor at Johns Hopkins University who was having success in placing stents in the pancreatic ducts. At the time, those stents were extremely short term and could only be in the ducts for 72 hours. The intent is for the body to begin forming scar tissue and make the ducts remain open.
The same doctor eventually moved to another Baltimore hospital and became a leading surgeon in its digestive health and liver disease department. He told the Johnsons about a stent that could stay in the body for up to four months, allowing the ducts to remain open with assistance.
“This was a great solution at the time,” Jim said. “This way Becky could be home for 10–12 weeks, be with our sons, at least get the chance to be a regular mom.”
That was in 2004. Now, Becky has been through more than 50 procedures.
“Just from the emotional standpoint, it is incredibly difficult. Every three months or so, we have to tell our kids that mommy is going away for a week, maybe two, but she’ll be back,” Jim said. “It’s a strain on her, and it’s a strain on our kids.
Cael, 9, and Kase, 3, have grown up only knowing this way of life.
“The unusual has been forced to become a routine for them. It’s an emotional struggle for them that I can’t even imagine,” Jim said. “They’re amazing in dealing with it. They know when she has to rest and when she has to leave but of course they miss their mother.”
Jim was quick to say this would be impossible without the help of both his and Becky’s parents, and that, when Becky is home, she is as helpful as she physically can be.
“She has good days and bad days,” Jim said. “She’s not able to work but she’ll get the kids ready for school and ready for bed, a very typical mom relationship.”
The routine of Becky leaving every few months for procedures may be ending. Now she has reached a point where the stents are not working as well and, with that, surgeries are required more often.
“We said after her last procedure in March that something else has to be done,” Jim said.
Jim researched as much as he could online and found a fairly new procedure. Becky’s pancreas as well as her spleen would be removed. Doctors would then harvest the auto islet cells from her pancreas and re-inject them into her liver. The hope is that, with continued medication, this would stop Becky’s pain and prevent her from becoming diabetic.
In doing his research, Jim found that The University of Minnesota in Minneapolis has successfully completed more than 400 of these procedures and their success rate and post-op care are second to none. All good news, but the bad news is the operation itself can cost $300,000, and Jim’s health insurance provider has refused to pay because it is an out-of-network hospital.
Jim is working with a specialist to appeal the decision but he is also ready to raise the money if he has to. The Johnsons have received slightly used home goods from people to sell at auction or yard sales. Including items sold and other cash donations, they have already raised $12,000.
“I cannot say enough about our community,” Jim said of their hometown in Medford Lakes. “Between the Mt. Laurel Fire Department and people at home, the response has been absolutely tremendous.”
The plan is to host a variety of events in the future. The first was a special night at PJ Whelihans in Medford Lakes on June 12. Support wristbands are also being sold for $5.
“If this is what it takes to give my wife a better life, I’m ready to do it,” Jim said. “Whatever it takes.”
For more information on upcoming events or how to donate, visit http://newlifeforbecky.wordpress.com/
