Kathryn Rierson | CaringBridge

Kathryn Rierson

First post: 2/1/2016 Latest post: 5/2/2017
I am starting this CaringBridge page because my nurse suggested I use this to connect with people and let everyone to know how I am doing. My latest illness and hospital stay has been a quite struggle so far.  Below is a recap of what has happened in the last few weeks.

I started having trouble eating in October 2015. I tried to eat different types of food from different food groups to find food that didn't make me sick but everything made my stomach hurt, made me nauseous, and/or made me vomit.  My doctor didn't know what was causing mystomach problems and referred me to a GI specialist.  Unfortunately getting in to see a GI specialist in a timely manner is next to impossible. My appointment was scheduled for February 16, 2016.  In the meantimeI struggled to find foods that I could eat.  By November I was eating somesaltines and Gatorade to survive each day.  My energy was getting super low and weight was dropping insanely fast.  By December I started having trouble staying hydrated.  I spent part of Christmas day in the ER to getre-hydrated then again on a few days later, then again on New Years Eve. Finally I nabbed an appointment that someone had canceled.  The Nurse Practitioner I saw at that appointment ordered a few tests to find out what might be wrong.  A few days later, I saw a resident at my primary care clinic to discuss placing a PICC line for fluids and possibly nutrients.  It was decided that a PICC line was a bad idea because of the risk of infection.  Instead a GJ tube (feeding tube) was scheduled to be placed on January 6, 2016. 

I went to the University of Minnesota for surgery to get a GJ tube. The surgery itself went smoothly. I woke with a lot of pain.  I was placed in a 23 hour observation unit which made me think I would be home the next day.  Instead I was moved to another floor because I was having trouble with pain control and the doctors wanted to monitor me longer were worried about refeeding syndrome.  On January 8th at about noon, I went into respiratory arrest.  My dad noticed that I stopped breathing and notified the hospital personnel.  They called a code and resuscitated me.  That was a terrifying experience.  I remembered being in bed with my dad andthen suddenly I woke up with dozens of strangers surrounding my bed movingquickly and doing so many things to me. I was so scared and confused because I could not recognize anyone andcould not find my dad.  When I finally got to see my dad, I saw that he was crying and that scared me even more because I still did not know what had happened but it must have been really bad. Turns out a possible cause for my arrest could be a combination of things including low phosphate, refeeding syndrome, and not metabolizing medications correctly through my new tube. I spent the next day and a half in ICU to make sure that I was okay andnot going to have another attack.  On the night of January 9th, I moved to the intermediate care unit where patients go if they still require lots of monitoring but not so closely as ICU.  I stayed in that unit for the next week or so.  Finally, it was determined that I was stable enough to move off that floor so for the last three days of my stay at the U of MN I stayed in the BMT unit.  The hospital was pretty full so there was noother room available.  That concluded mystay at the university.  When I enteredthe hospital, I walked with the assistance of two walking poles.  By the end of my stay at the University, because I was in bed so long without much physical therapy services, I wasn’t able to walk, stand, or sit independently.

On January 18th,2016 I was deemed stable enough to move and was transported by ambulance from the University of Minnesota to Regions Hospital for Acute Rehabilitation.  I had the option of staying at the University of Minnesota but I’ve had such bad luck and bad experiences that I did not want to stay at the U if I didn’t have to.  I had previous positive experience with Regions outpatient physical therapy so I asked to be transferred to Regions Hospital for inpatient therapy.  Within hours of my arrival, I knew I made a good choice.  The nursing care,communication with healthcare providers, and pain control was so much better! 

I plan to use this site to update family and friends about my progress and recovery.  The process looks to be a long one but I plan to work hard to recover so I can return to teaching, instruction swimming, and holding regular Girl Scout meetings.    

Illnesses/Conditions

Eherls-Danlos Syndrome (EDS)


Transverse Myelitis (TM)

Postural Orthostatic Tachyardia Syndrome (POTS)

Goldenhar Syndrome

Lymes Disease (twice!)

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