THIS IS MY STORY . . .

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Feb 14, 2015

Hi friends,

Just an update for you!  For those who don’t know, I had to go the ER yet again this week. 🙁  My PICC line site was red, hot, and swollen, and I was experiencing low grade fevers when my home health nurse visited last Thursday and when I saw my GI specialist this past Tuesday.  He feared a line infection and wanted it to get pulled.  So Wednesday I was told to go to the ER.  When the doctors and nurses know you, you’ve been there too often…… :/  They drew blood cultures and labs to check for infection and ordered an ultrasound to rule out clots in my upper arm.  And guess what—-a clot was found in my cephalic vein!  That’s one of the complications when you have a central line.  They admitted me overnight in the ER observation unit for IV fluids and potassium because my potassium levels were low.  They also pulled my line and started me on two heavy duty blood-thinners to prevent it from traveling to my lungs and causing more problems.  Yesterday morning, the PICC team came by to place a new line in my left arm.  I was also taught how to give myself anti-coagulant shots twice a day….not pleasant. 🙁  This certain drug burns horribly!

Today I had a follow-up with my cardiologist.  We discussed my recent heart echo results, and he is going to consult with another cardiologist because they found thickening of my aorta (that was a surprise because it wasn’t there on my two previous echos!).  Also, they found a mobile mass in my right atrium, but he thinks this is congenital and shouldn’t cause problems.  Still, that was another surprise since it wasn’t found there before!  I am a puzzle, and I keep my doctors on their toes. lol 😉  My cardiologist is also going to get in touch with my GI specialist next week to see if more sodium can be added to my TPN because my high heart rates, dizziness, and heart fluttering has been getting worse.

Monday I have an appointment at the anti-coagulation clinic to get labs drawn and see the doctor there.  And Wednesday, I have surgery to get a central line placed in my chest!  They wanted to do this soon to prevent a clot from happening again…..but who knows, I’m not the typical patient. 😉

It’s been crazy hectic, and my arm where the clot is still doesn’t feel well yet.  But I continue to trust the Lord and persevere!  He is good.

Thank you all for your love and prayers!

P.S. A famous mito specialist from Ohio came to speak at OHSU the same evening I was in the ER…..the ER docs were so kind to let me go to it since the lecture was literally just down the hall! 🙂  It was very informative.  I was able to ask the mito specialist about my mtDNA depletion results.  He looked over the report and told me that my depletion is 99% which is very high….no wonder my GI tract is so affected. 🙁  I really hope these results and the ones pending will help me be eligible for a future clinical trial!

My new PICC line right after it got placed 🙂
Post written byKerissa

This post has 2 comments

  • wow with that level of depletion you are truly a miracle! Tough stuff. Hang in there, Hopefully your getting your central will reduce the clots and infections. I think they call around 20 percent the "threshold"(depending on percent in each body system,some systems may have worse or better) less then that left and things really do start to get tired out fast.

  • Thank you, Diane! I am blessed to have caring mito friends. 🙂

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