Delano Herald Journal

Serving the communities of Delano, Loretto, Montrose, MN, and the surrounding area

Finding a reason: rare auto-immune disease captures Erickson’s summer



From Julie Gutknecht
On behalf of the family

COKATO, MN – When we are faced with difficult circumstances, we may try to find a reason for it. We may want to make the best of the situation. We may finally realize what’s most important in our lives.

For Mandy Erickson of Cokato, that list begins with her faith, her family, and her friends. She urges everyone who hears what’s been happening to her this summer to learn CPR (cardiopulmonary resuscitation), have a primary physician, and recognize Cokato’s outstanding emergency services.

Mandy was diagnosed with GPA (granulomatosis with polyangiitis) in August after endless tests and several doctors with a certain amount of duplication thrown in for good measure, but that’s not how the summer started.

We’ll get to GPA later. For Mandy, it all began back in May. Within a few weeks, she lost her hearing.

“Thinking it was something simple, like an ear infection, I went to urgent care and they gave me my first round of antibiotics,” Mandy said.

The antibiotics had no apparent effect. She went back to urgent care, another round of antibiotics, and still there was no effect. Then, Mandy had an appointment with a doctor and a third type of antibiotic. By this time the symptoms had traveled to her lungs (coughing hard had caused a broken rib or two), then into her joints. That joint swelling and pain was intense.

“I could barely get out of bed. Everything just hurt, no position gave me any relief,” Mandy recalled.

“As parents, it was very frustrating,” Dorene Erickson, Mandy’s mom, explained. “No one seemed to be really listening to Mandy, or us, and she still couldn’t hear. We just wanted to scream at someone to listen.”

Finally, they asked for referrals and Mandy was then seen by a new set of specialists with more tests and, according to her mom, many seemed to be duplicates of what had already been done.

Inner ear tubes were inserted to help with drainage with the hope of restoring her hearing. It was determined that the onset ear infection was viral and not bacterial so the switch was made to treatment with steroids. And with that treatment came its own set of side effects, but no real improve- ment. And then, in addition to the ear infection, lung issues and joint pain, there was also a question of kidney and liver involvement. “Every system seemed to be crashing down like a crumbling house of cards,” Dorene said. “They all made their diagnoses but no one could tell us why so many things were happening at once.”

Then Mandy developed Bell’s Palsy, facial paralysis often caused by viral infection with a stress component. In her case, it affected the left side of her face.

Neither Mandy nor her friends and family could have envisioned a summer like 2018.

One of the specialists to whom they were referred at CentraCare Health was Dr. Bharath Veetil, a rheumatologist. He looked at the entire picture and saw a pattern to it all – GPA, granulomatosis with polyangiitis (formerly called Wegener’s disease). GPA is a form of vasculitis or inflammation of blood vessels that affects many organs, depending on the patient, and in Mandy’s case, most every system was attacked.

At this point, the Ericksons all thought they could move on, get treatment, get resolution and healing – finally.

Not so quick. Complicating the already complicated situation was Mandy’s SVT. The supraventricular tachycardia is a racing of her heart which is something she’s always had. It had sent her to the emergency room once over the years, but had been manageable – until now.

About the middle of August, Mandy’s heart started racing and nothing seemed to help. She was raced to Hutchinson’s emergency room where there were indications that she’d had a heart attack, and she was then transported to the Minneapolis Heart Institute at Abbott Northwestern Hospital. Her BPM (beats per minute) was up to 247. The normal range is from 60 to 100.

It was at this point that Mandy and her family decided to begin a Caring Bridge site to help share information about what was going on.

Aug. 13, Gordy (Mandy’s father) and Dorene noted: “One wish has been granted – Mandy finally has a whole team of specialists trying to sort this out! And Dr. Veetil was gracious enough to work with the Abbott staff.”

Over the next week or so, her team dealt with the various problems associated with the GPA and the damage caused to her various systems. Infusions of Rituximab to combat the GPA were begun. Rituximab is similar to chemotherapy, but without the side effects. She would need a total of four infusions in this round, and in several months, another series. This will manage the GPA and put it into remission, since there is no cure for GPA.

Then, if you look at the entry headings on the Caring Bridge journal, you begin to wonder: “Orange you glad you read this,” “Up your nose with a rubber hose,” “Teddy Ruxpin,” “Well, we got that over with.” And then there were the repeated references to Mandy’s urine color. For Mandy, her parents and her sister and brother-in-law, Dori and Hal Kimball, the reason for levity seemed logical: Yes, it’s serious, even critical, but it doesn’t have to be so dramatic. While they sat around and waited and worried and prayed, they let their minds wander afield.

Through the middle of August, Dorene, Dori, and then Mandy, entered the details of what was going on with a smattering of humor, down to playing bingo with her dozen and more specialists.

Aug. 18, Mandy reported: “We still have a bit of a road ahead, but definitely on the mend. My family has been pretty da%# fantastic throughout. Literally could not be here without them. Seriously, they took me to the Hutch ER to start with. An ambulance ride to Abbott on my 40th birthday was absolutely not on my bucket list, but such as it is.”

Aug. 20, the entire family took a long, slow breath as Mandy was discharged from Abbott in an entry she entitled, “Fresh as a daisy!”

Then came Dori’s entry Aug. 21: “Pray, Pray hard. Please.”

Dorene had found her 40-year-old daughter, just home from the hospital, unconscious and unresponsive. She began CPR (cardiopulmonary resuscitation) while Gordy called 9-1-1.

“If it sounds like we were calm, we weren’t,” Dorene said. “I didn’t know if I remembered how to do CPR. I’d taken classes years ago. It’s hard to imagine how it feels to do CPR on your daughter.”

Their 9-1-1 call was transferred to Abbott, and their specialists talked them through the process.

First on site was a Wright County deputy who shocked Mandy’s heart. Then the ambulance crews from Cokato, and later Hutchinson, shocked her heart again. She was transported to Hutchinson and airlifted back to Abbott.

Mandy remembers nothing of these hours. She went to bed in her home and woke in a panic back in intensive care with a myriad of tubes and monitors. She went through induced hypothermia, where her body was cooled and very slowly warmed again in an attempt to protect the brain and heart from damage due to a lack of oxygen.

As her condition stabilized, so did the Caring Bridge references to “Star Trek” and “Moving on Up” as she was released from intensive care.

Dorene reported that the SVT (racing heart) which caused the first visit to Abbott, did not cause the cardiac arrest. It was the GPA, her rheumatologist at Abbott, Dr. Emily Pfeifer explained. She described how rare this heart involvement was and added Mandy is only the fourth case worldwide she could find to have been reported.

Two days later Mandy was scheduled for an ablation to desensitize the nerves in the lower portion of her heart that caused the SVT, and also the insertion of a pacemaker/defibrillator to shock her heart if it decided to stop again and to keep it pacing correctly. Ongoing around this, Dr. Pfeifer has scheduled further infusions of the Rituximab for the underlying GPA.

Mandy commented on the Caring Bridge site Aug. 26, just five days after returning to Abbott by helicopter. “Monday night I went to bed at home. Then all went to heck. Apparently there was a helicopter ride and some pretty scary moments for the family.”

She admitted having to read her own Caring Bridge journal to figure out a confusing timeline. She signed it “Bazinga!” A reference to a favorite tagline from “The Big Bang Theory.”

There are times when it’s nice to talk to someone who’s been through it. In Mandy’s case that’s hard, since her case is so rare.

She can talk to her first cousin, Scott Brandel. They now share more than they could have imagined.

At about the same time as Mandy was doctoring, Scott was fishing on a pier in Litchfield when he had crushing chest pain. He’d had heart issues since he was born, but this was different. He flagged down a passing fisherman before collapsing.

The fisherman transported him across the lake to the public access while calling 9-1-1 to have rescue help waiting. CPR was performed by a bystander in Scott’s case too, or he might not be here either.

After CPR and electroshock, Scott was transported to St. Cloud Hospital where he, too, went through induced hypothermia while being assessed for causes and damage.

Now at home and stable, he and Mandy have talked about the lapse in memory of their events and the odd coincidence of their experiences.

Mandy was re-discharged from Abbott Aug. 28 and remains at home to recover her strength, to regain some of the nearly 40 pounds she lost, and to resolve the medical issues still plaguing her such as the GPA, Bell’s Palsy, neuropathy in her feet and the original symptom, loss of hearing.

She has returned to work part time at Precision Prints in Buffalo, where she has been employed for almost 20 years.

“The owners have been great in supporting me and being patient with me when this first started, and now coming back to work slowly. Our customers have been great in showing their support,” Mandy commented.

Dorene added, “We’ve been humbled by the show of support from all our family and friends.”

Mandy’s first cousins, Amy Sluis and Allison White, plus longtime friends, Amanda Zeidler and Kelly Babekuhl, de- cided to organize a fundraiser.

While Mandy has insurance which has covered the majority of her medical expenses, there have been many miles of travel, lost wages, and other expenses.

The fundraiser is scheduled for Sunday, Oct. 28, from 11 a.m. to 3 p.m. at St. John’s Catholic Education Center, which is located just west of Dassel-Cokato High School at 17260 US Hwy. 12 SW, Cokato. Questions about the fundraiser can be directed to one of the four organizers.

Friends and family have come together to provide grilled pork chops with all the fixings, a fantastic variety of silent auction items, delicious bake sale, a fun kids room, and more. An account has been set up at Kensington Bank in Cokato and donations can be made out to Amanda Erickson and mailed to the bank at P.O. Box 220, Cokato, MN 55321.

“It’s hard to know how to put this into words,” Mandy said. “I’ve never been a ‘look at me’ kind of person, so if something good can come out of this summer, I have three things for you to remember. Learn CPR. If my parents hadn’t started CPR, I wouldn’t be here. The second is to see how important it is to have a primary care doctor. We need to have someone who’s looking at the broad picture and not just one urgent care report to the next. Maybe if I’d had one doctor seeing what was going on, I could have avoided some of what happened. Lastly, certainly not least, is to appreciate our EMTs. We have fantastic emergency services here in Cokato. Not all small communities have that luxury.”

When Mandy left Abbott Aug. 19, none of them could imagine a day later being back in cardiac intensive care.

To that end, Mandy, while uncomfortable being the focus of the fundraiser, has asked if it could include information concerning those three.

For more information and details see caringbridge.org/visit/mandyerickson and find the fundraiser on Facebook, Mandy Erickson Benefit, www.facebook.com/events/469545963551022.

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