Katie Linnenkohl Katie's Village News

First post: Jan 23, 2016 Latest post: Apr 29, 2017
Welcome to Katie's village site. We've created it to keep friends and family updated on Katie's hospital journey. We appreciate your support and words of hope and encouragement during this time when it matters most.

A bit of back ground... Katie was diagnosed with Myasthenia Gravis last September.   Myasthenia Gravis (MG) is a chronic autoimmune, neuromuscular disorder that is
characterized by fluctuating weakness of the voluntary muscle group. Common symptoms can include:

· A drooping eyelid
· Blurred or double vision
· Slurred speech
· Difficulty chewing and swallowing
· Weakness in the arms and legs
· Chronic muscle fatigue
· Difficulty breathing

I am sure that most of you have noticed that Katie didn't smile much in photos last year.  Turns out that she physically couldn't. 

Immediately after diagnosis (UCSF Head of  Neurology), she was put on medication.  She did really well on it until December.  Finals hit her like a ton of bricks.  Stress is really bad for MG.  It feeds the antibodies that cause the weakness.  Katie had double vision, couldn't hold her head up and generally felt really weak.  It was then we decided to look into removing her Thymus Gland.  Long story short.... it is happening next week.

Katie will be admitted to UCSF Children’s Hospital (Mission Bay) on Tuesday February 2nd. She has 9am surgery to place a Broviac line in her neck.  Then at 2pm she starts her first round of Plasmapheresis. Plasmapheresis is a 2 to 3 hour process in which her blood is “cleaned,” and the antibodies are removed. Kind of like Dialysis.  She will have Plasmapheresis on the 2nd,4th, 6th, 8th, and 10th.  She will go into surgery on the 11th at noon.  If all goes well we should be home by the 15th. This is major surgery.  The Thymus Gland is just below the breast bone and on top of the heart.  Luckily, they don’t have to crack her sternum.  The surgeons will go through her left chest wall and do the procedure.  The procedure is called Thoracoscopic Thymectomy if you are so inclined. 

I will be staying at UCSF with her. I have several friends who will be helping us out.  Matt will be staying with friends.

Dana and Lindsay will be coordinating visits, food, etc....

Love you all and thank you for all your support,


From Dana: 

Hey Everyone,

I will be helping Lisa out to coordinate meals, visits, rides for Matt, etc. Please feel free to text, email, or phone anytime. My phone # is 916 502-1007, and my email is danateen@hotmail.com. I will be posting a calendar for folks who are able to help with meals once Katie is home -- along with brief visits, if she is up to it.

Love to you all! xo, D

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