THIS IS MY STORY . . .

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Jan 15, 2017

“Everything you face in your life and overcome with God’s strength today prepares you for what will cross your path tomorrow.”

~Joni Eareckson Tada

 

Hello friends,

 

So hard to believe that it’s already the middle of January!  The year started off a little rough—I had a tunneled central line infection which began around January 1st….it was a New Year’s present to me….just kidding. 😉  But by God’s grace, the bacteria didn’t travel to my blood and cause sepsis like last year.  The site, though, was pretty tender and starting to ooze.  My GI dr. immediately placed me on a week’s course of antibiotics which did the trick.

 

Because of the tunneled line infection and because my line is causing other mechanical problems that are a high risk for further infection, my GI dr. thinks it’s now time to have a port surgically placed in my chest which is what the hospitalist wanted me to have done last year when my line caused sepsis.  The con with a port is that my nurse will have to use a large Huber needle and push it into the port in my chest once a week.  And since I’ll have to use the port every day for my daily IV magnesium and TPN, she’ll need to change the needle every week!  Lots of needle sticks in my future… 🙁

 

this is what a huber needle looks like.. :O

 

I already had an appointment with my general surgeon this past Wednesday.  I have to first see the pre-op people and get another venous duplex ultrasound study done to look at all my veins which will help my surgeon know where to place the port.  The scan will also check up on the clot in my right arm that’s been there since 2015.

 

Surgery is set for January 27th.  They’ll also remove my central line and replace my jejunostomy feeding tube.  Glad I don’t have to be awake for that as it’s really painful.

 

Tomorrow, my parents and I leave for San Diego to see my mitochondrial specialist on the 17th.  My muscle biopsy results are finally completed after waiting more than 4 months, so the plan is to go over all of those.  I’m also seeing the medical director of the pain center at UCSD on the 18th, and my pain dr. at OHSU is excited about that because she knows him well. 🙂

 

Looking forward to warmer weather in San Diego.. 😀

Post written byKerissa

Check out my previous posts below

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2019 Mitochondrial disease appointment ...
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Hard battle. ...
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Reflections on this past year 2018 ...

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