Help Jill with Medical Bills

Hi, I'm Anne Tarantino, one of a few Kindergarten girls raising money for Jill Marinello's medical bills. Along with my friends Cathy Tippy (Weidmer) and Kay Roden (Schmit), we want to raise what we can for Jill, but we also want to keep people aware of always being their advocate for their health care treatments.

In July 2019, Jill was preparing to go up north to her family's cabin. She was quickly doing a few chores around her hobby farm so she could get on the road. As she was changing out the duck water, it splashed on her face getting in her eyes, nose and mouth. She ingested duck poo.

By the end of that weekend, she had flu-like symptoms. There were aches, pains, high fever and other horrible symptoms. Of course, Jill continued to go to work. She went to an urgent clinic a couple of times that week and ultimately ended up in the ER. She contracted a bacterial infection called campylobacter which she had for two weeks. This infection left her a shell of herself .... she could barely function.

During the following weeks, she started to notice odd things happening ... she would move her head and feel an electric "shock' through her body together with numbness and tingling in her arms. One doctor she went to said she had arthritis in her back and that was the cause for the shock. Jill told them that was the dumbest thing she ever heard and searched for more doctors. I'm sure there were more words spoken, but we can't print that here.

After months, of multiple doctor visits with multiple doctors, she found an incredible neurologist that began many many tests that would lead to a diagnosis of Small Fiber Neuropathy (SFN). This came 4 months after the duck incident. By this time she was experiencing numbing in her hands, feet and face as well as continued electric shocks and stabbing pains throughout her body from head to toe. She was in horrible pain, extremely fatigued and had a hard time focusing, but continued to work until the end of 2020. This is when she made the decision that her body could no longer handle the hour-plus commute and the daily stress of her job. She retired from the corporate world which she loved. However, she did have her upholstery work and yoga to focus on.

After many pain medication trials and errors (mostly errors as she has horrible side effects from all of them), she continued to experience many more medical issues relating to her SFN. Her SFN continued to worsen and no medication was working for the pain until her doctor finally got her approved for IVIG which is more than $10,000 per infusion (not all covered by insurance) which she has every four weeks. The IVIG does help so she can at least get out of bed but then in April of 2022 something strange started happening. Without warning, she was no longer able to eat or drink without excruciating pain behind her sternum along with vomiting, additional fatigue and other GI issues.

Again, she went from doctor to doctor and had every test done imaginable. But the tests kept coming back "normal." By the time winter of 2022 came around she was 80lbs down without trying. She continued to get weaker and lose weight. By this time she was unable to work at all. Her neurologist referred her to the Mayo Clinic in Rochester, MN.

There was a good 6 weeks or so before she could get in and she would be staying with me. I would take her to Rochester as she needed or stay with her if needed.

We were pretty excited and figured the Mayo Clinic would find something. They seem to find almost any hard-to-diagnose issue.

The first two weeks at Mayo we met with a GI doctor that would be Jill's lead doctor at Mayo. She ordered all the same tests plus more that Jill had over the previous year. Some were incredibly painful. She met with GI doctors, hematology and neurologists. Everything was normal. Most would like to hear that tests were coming back normal but they could not figure out what was going on.

Jill went back home with no answers for Christmas of 2022 and her birthday and was 80 lbs lighter. She was starving to death.

Jill is part of an SFN support group. Desperate for answers, she asked her group if any had experienced any of the symptoms she was having. She told them her issues just to see if it was part of her SFN. There were a few people that had the same thing. It was hard to diagnose but it was called MALS or Median Arcuate Ligament Syndrome. MALS is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver and other organs) and the nerves in the area (celiac plexus). The Mayo Clinic even put a paper out about Mals:

MALS. She made sure she learned everything she could about MALS as she was sure she had it.

When she went back to Mayo in January for another week-long visit, Jill brought up MALS and was quickly dismissed with "no you don't have MALS". Again, she had more tests that came back normal and we met with another set of doctors. Losing that much weight (she is now hearing a 100 lb weight loss) without trying in and of itself would be a cause for alarm one would think. There was no follow-up, no more tests. Mayo would not listen nor have their MALS group look at her test results. The lead doctor instead decided she needed to repeat another test which the doctor admitted would probably not show anything. So instead she thought Jill should see behavioral health so they could prescribe medicine to tell her brain she was hungry. Jill did not need medication for that -- she was literally starving! She asked over and over to have someone familiar with MALS look at her results but again was dismissed.

After that last visit, I took it upon myself to tell Mayo how disappointed I was in the care my friend of over 50 years got. She was fading away as the strain on her was both physically and mentally draining. They did reach out to Jill but instead of getting a new dr, a new treatment plan or a medical follow-up, it was basically, "sorry you weren't happy." Thanks, Mayo Clinic, this wasn't a bad stay at the Holiday Inn this is someone's life.

Finally, by March of 2023, Jill was referred to a cardiothoracic surgeon (for something she did not have but Jill kept an open mind). This doctor asked her if anyone ever mentioned MALS to her. Jill finally had a doctor that would listen! By this time she was 100 lbs down. The pain was unbearable and she was suffering from severe depression and not to mention extremely weak. This doctor referred her to the Vascular Department at Froedert and she was finally diagnosed ...........MALS.

Jill had open surgery in May of 2023 for MALS. It is a long and painful yearlong recovery and she is only given a 50/50 chance of the issues going away completely. It was worth the risk. The pain is not only physical but emotional due to the medical bills, not being able to work and using her and her husband's retirement to pay what they could.

Despite having insurance, there is a mountain of bills piling up as insurance only covers a portion. We wrote to Mayo Clinic to ask to have those bills dismissed due to lack of help, but they refused stating Jill didn't do the treatment they wanted. THANK GOD she didn't. I'm no doctor and just a friend of 50+ years but it seems to me that she would have a feeding tube had she listened to them.

Equally as important is the awareness of being your medical advocate. Healthcare is big business and the care of patients is declining. Please not only help Jill but send this to folks that are having the same problem so they can get the care they need.

Sincerely,

Anne Tarantino

Cathy Weidmer

Kay Schmit