Team helps mom battle mystery malady
Staff writer
For three years, Marion resident Jennifer Frese has been battling health problems.
Expenses have grown higher and higher.
Members of Marion’s high school football team, of which her son, Jonathan, is a member, gave Frese an $8,350 check during sports introductions last week to help with those expenses. Teammates had a weight-lifting marathon to raise the money.
Jennifer designated her husband, Brian, to speak for her about the issues that have caused her to have frequent episodes of anaphylaxis, an allergic reaction that causes blood pressure to suddenly drop and airways to narrow, blocking breathing. Signs and symptoms include rapid, weak pulse; skin rash; and nausea and vomiting.
In the summer of 2019, she developed an infection and blurred vision in her right eye and was referred to Grene vision group in Wichita by Legacy Eyecare of Hillsboro, Brian said.
An ophthalmologist diagnosed an auto-immune disorder and referred her to a rheumatologist.
After trying several prescriptions over a year’s time, the rheumatologist put her on an injection medication for rheumatoid arthritis.
About six months after that, she was vaccinated against COVID-19. Several weeks after her second vaccination — about six months ago — she had her first anaphylaxis episode at work and was rushed to the emergency department.
“It seemed at the time that it was caused by eating nuts,” Brian said. “About five weeks later, she had another reaction from eating a burger and fries and had to use an epinephrine pen before we were able to get to the ER.”
She had to stop using injection medication for rheumatoid arthritis because she was allergic to it.
She avoided eating nuts and red meats, which helped until January of this year, Brian said.
Then, in January, she got COVID. Towards the end of March, anaphylaxis events intensified.
“It appeared as though dairy had been added to the list, and then also the act of eating would cause anaphylaxis,” Brian said.
The episodes began to happen two to three times a week. A diet of liquids and soups seemed to help, as did several rounds of steroids.
Her allergist referred her to National Jewish Health Hospital in Denver.
After a week of testing, no food allergies were found. Instead, physicians suspected a disorder of cells that trigger allergic reactions.
Testing also showed vocal cord dysfunction, and she is being treated for those two issues, Brian said.
Jennifer will return to Denver next month for follow-up.
Chest and abdominal pain after epinephrine injections in July led to three ER visits.
She has missed work because of restlessness and severe headaches linked to epinephrine injections. She goes to speech therapy to work on problems with her vocal cords.
Brian said the unpredictability of when an anaphylaxis reaction will occur has been one of the hardest things
“A meal or food may be OK one day, but not the next day or week,” he said.
The severity of the reactions varies, with the more intense ones including severe vomiting and dry heaving, loss of consciousness, and momentary lapses in breathing, he said.
Last week was especially hard on Jennifer because she had reactions six of the seven days, he said.
Physicians in Denver asked her to have a CT scan, but she had a reaction during the scan and was rushed back to the emergency room. Brian speculated contrast material used during the scan might have been the trigger.
“She is back on a course of steroids to hopefully calm it down,” he said. “She continues to have episodes, but we remain hopeful that Jennifer will heal and progress away from these issues.”
People wanting to help with Jennifer Frese’s medical expenses may leave a check made out to “Jennifer Frese” at Central National Bank. They may also donate through a GoFundMe page, “Jen Frese medical fund.”
“The prayers, love, and support from family, friends, church, and the Marion community has been overwhelming and greatly appreciated,” Brian said.
Last modified Sept. 1, 2022