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Support Amy's Journey Through Medical Challenges

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Support Amy's Journey Through Medical Challenges

Support Amy's Journey Through Medical Challenges

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$825 raised of 

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On behalf of our sister Amy and all the people who love her, who want to follow her journey and support her, we are starting this page.

As of September 1st, 2025, Amy is currently hospitalized at St. Mary's Mayo Hospital in Rochester. MN. She has a long journey ahead of her, and we are here to keep you updated as much as possible.
Here is her story:

On May 5th, 2025, Amy had surgery for a hiatal hernia and gallbladder removal in Aberdeen, SD. The surgery did not go as planned, and she had severe complications as a result.

Immediately following the surgery, she got pneumonia and was hospitalized again. She stated the level of pain she was in, and it was dismissed.

She presented to the ER a couple of times after being released and was again dismissed.

We finally talked her into seeing a Gastro dr in Sioux Falls, SD.

After consulting with 2 Gastro Dr's in Sioux Falls, they concurred she was NOT ever a recipient for a 2nd hiatal hernia surgery. (The one done in Aberdeen)
-Back track- she had a similar surgery done 20 years ago.

The 2nd hiatal hernia surgery and dismissal of symptoms led to forced malnutrition. She was 189 pounds in May and is now at 131 pounds today.

She was trying to be a champ and "wait it out" with the Dr's in Sioux Falls, but they just were not working fast enough. Test after test, she would have to "wait another week and come back for results." She ran out of weeks to wait.

In all, her esophagus muscles no longer work, so she can't swallow food or anything thick. It is constantly on fire from the nerve pain as well.

Her stomach, after the surgery, was sucked up into her chest cavity, leaving it in turmoil essentially.

When he went to repair the hiatal hernia, her stomach was attached to her lung and liver. He removed it from those organs, leaving her stomach in shambles ("it was as thin as tissue paper and had to be sutured during the procedure," he stated)
He also stated he had "to stop the surgery because there was so much scar tissue that needed to be cleaned up and and could not continue on that day" - wanting her to come back for another surgery to place the tiff portion when she healed.

All of this led Amy into severe malnutrition because she could not eat nor keep anything down, causing severe hyperemesis.

Finally, after months of starvation, constant severe pain, and mental decline, it was time for a ride to Mayo.

We drove to the Mayo Clinic ER on Tuesday, August 26th. We arrived at 8 pm and finally called her back at 3 am. From there, they did many tests, admitting her as "Failure to Thrive."

She was about 48 to 72 hours from death on Wednesday. Her blood was not clotting appropriately and since she was severely malnourished, she would have been found dead - bleeding out of every orface.
She was placed on IV fluids, IV fats, and a lactatedringer to stabilize her numbers that were all over the place.

On Thursday, August 28th, she had an NJ feeding tube placed. This goes into her nose and down to the Jejunum intestine, bypassing her stomach all together. The jejunum is the middle portion of the small intestine, located between the duodenum and the ileum.

We were not sure if her intestines worked at all, but they came alive again and do in fact work! This is a huge win for her!

Yesterday, August 31st, she had some setbacks. The dr who saw her in the morning (not her dr) wanted to try a food trial by mouth. This did not go well at all. Her intake was about 6 Tablespoons of broth that led to a whole night of vomiting, severe pain, and a huge mental decline again, feeling hopeless.

Today, September 1, the Dr's decided it would be best to pull the NJ tube and get her back to comfortable.
This week, she will have some more testing to find out HOW they are going to attempt to "fix" what that surgeon messed up. We do not know yet if anything is even fixable....

She will face many challenges ahead with the possibility of a long-term feeding tube.

She is sad and frustrated most of the time, and we are sad for her, but we are trying our best to help her through it all.

We will be setting up an account as well to help offset medical bills, equipment and travel for anyone who would like to donate.

She could use all your prayers good juju and love as well!

Mamma, we know you are watching down on your baby helping her through this time in her life. She needs you most.

9/18 update since leaving Mayo.
Update from Amy:
I underwent a manometry test in Rochester last week, which I failed, indicating that my esophagus is not functioning properly. This was my fourth test, and although it was more advanced, it was equally unpleasant. I had a difficult day on Sunday and slept the entire day. I have also lost an additional nine pounds, so I am trying to avoid exerting myself too much. My caloric intake is limited due to the clear Ensures. My doctor called me on Monday and scheduled another EGD with anesthesia. I will be returning to Rochester on Monday, and hopefully, we can develop a plan afterward. Some days I feel frustrated, while others I accept the situation. I appreciate your continued encouragement and prayers.

Thank you all for loving on Amy.

Lori, Dawn, Josh and family.

Co-organizers2

Profile photo of Lori Neitzel
Lori Neitzel
Organizer
Aberdeen, SD
Amy Koester
Co-organizer
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