Linda Tesch Linda Tesch

First post: Jul 30, 2021 Latest post: Aug 25, 2021
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On June 21st, Linda was at the grocery store and decided to check her blood pressure. At that time, she noticed her heart was beating at 140 bpm. When she got home, she realized she wasn’t able to catch her breath, so she decided to go to the hospital just to make sure she’s ok. That’s when things got crazy. She was setting alarms off all over, causing the staff to really worry, all while she just sat there feeling absolutely NOTHING! Clearly things weren’t right, but St Elizabeth’s staff was unable to look further, so they transported her to Nebraska Heart Institute via ambulance with lights and sirens (she was not a fan of that😄). 

Once she arrived to NHI they were able to find ZERO blockage, but she was still setting off alarms. They found that she was having additional beats in the lower chamber, so they gave her meds to try to control that and have a specialist look at her the next day. Fast forwarding through most of that week, she sat there annoyed that she was there because she wasn’t feeling anything, but they started to feel that she was experiencing a particular type of Myocarditis. This put her beyond their knowledge, so they talked about moving her to another hospital, but nothing really happened, until June 27th, when her heart stopped 4 different times. For the next couple of days we weren’t sure what was going to happen, but we prayed for a room to be available up at UNMC where she could get the attention and care she needed and deserved. 

Wednesday June 30th, she finally got a room and the ok to be transported up to UNMC. Things were not looking good. They flew her up and Linda arrived in not so good condition. They ended up having to shock her as she was in VT (Ventricular tachycardia) and was hypertensive. They did a right heart catheter to measure pressures, volume status, pumping, etc... Then they did a temporary active fixation lead-which is another type of pacemaker (more stable) but will be screwed directly to the heart. This was to help them read what’s going on and take a biopsy of a part of her heart as well.

One thing we have heard from the start is her heart is very sick. The chambers are not in sync. The inflammation is causing different signals so sometimes the bottom chamber will beat before blood makes it down to it. Because of this she needed an ECMO and impeller placed to help blood flow. 

Through all of this, we learned that she indeed has Giant Cell Myocarditis. Giant cell myocarditis is a rare cardiovascular disorder that occurs for unknown reasons (idiopathic). It is characterized by inflammation of the heart muscle (myocardium), a condition referred to as myocarditis. They say it is an autoimmune disease so her body was attacking her heart. There is still so much that they are trying to learn about the disease, but Linda is giving them every fighting chance! 

She was at the top of a heart transplant list for a brief moment, but her body was really taking on more than she could handle. Her heart was very sick and she was gaining infections and eventually was taken off the donor list. 

After weeks on an ECMO, many meds, multiple back to back procedures, she started to develop some depression and heavy delirium! Thankfully, that only last a few days (even though it was pretty awful to see) and they were able to remove machines going in through her hips. This allowed her body to now sit and get her body to feel something different. 

Over the last week, she has really progressed! I’ll update her latest in a journal update and try to keep up from here on! Please feel free to ask questions, as I really went through things quickly, but thanks to a friend (Elaine Cranford) for recommending this site, I wanted to get it going for friends and family to follow! 

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