Mar 24, 2016

Hello all,

I’m sorry I’ve been MIA here!  I’ll just cut right to the chase. 🙂

On February 26th, I started dealing with vomiting.  We didn’t know what was going on, and my GI specialist was unsure if this was due to worsening GI dysmotility.

I had 3 more episodes of vomiting and dry heaving, and very early in the morning on March 8th (around 12:00 am), I began experiencing a fever of 101 degrees, terrible low back pain, severe chills, headache, and heart rates over 150 bpm.  I was taken by ambulance to Legacy Emanuel ER because OHSU’s ER was filled to the brim, and they couldn’t even take ambulance patients.  I had lots of tests ran all throughout that early morning, and we found out that my blood cultures came back positive (in my blood and central line) for gram positive cocci in clusters (more specifically, Staphylococcus Capitis).  I was septic and spent 9 days in the hospital.  I had to have a spine MRI to make sure the infection didn’t spread to my back.  The doctors also ordered a heart echocardiogram to look at my heart valves to make sure the bacteria didn’t stick there.  On Friday (March 11th), I had a central line removal procedure in Interventional Radiology.  Then, Saturday, I was transferred to OHSU since almost all of my doctors are there.  I continued to receive heavy duty IV antibiotics—they were very hard on my veins. 🙁  On Monday, I had a venous duplex ultrasound study to look at all the veins in my neck and arms to help the doctors figure out the best central line access.  And on Tuesday the 15th, I had surgery #11 to get a new central line placed.  I got discharged on Wednesday the 16th. 🙂

I’m weak and exhausted but slowly recovering here at home.  I’m also still on IV antibiotics, and the Infectious Disease doctors will let me know when I can stop them….they are looking at my labs weekly to see if my body is ready to be off antibiotics.  I have a follow-up with them in clinic on April 6th.

Yesterday I saw my GI doctor, and we had lots to discuss.  Several of my liver function labs are high, and he thinks my liver took a hit from the infection.  My bone marrow also got affected, so my blood counts are lower than my normal.  I get labs drawn again tomorrow, and we’ll see how things are looking.  My next infection in the future (and it’s not “if,” it’s “when”…….infections are a given with long-term IV access. 🙁  You can be so sterile with your central line and still get sepsis…!), I probably won’t be getting another central line.  My GI specialist spoke with the hospitalist, and they both agree I should get a port surgically placed in my chest because it can be less risk for infection.  But, there are pros and cons with a port, just like there are pros and cons with a central line..

Next week, I have 3 appointments with Sleep Medicine, Pain Medicine, and Nephrology.  My nephrologist did discover that my kidneys are spilling magnesium and potassium which is why my blood MG and K levels can’t hold steady.  What’s going on is similar to something called Fanconi Syndrome (this can be seen with mitochondrial disease).  She’s looking into starting me on a medication to help my kidneys hold onto Mg, but it lowers blood pressure.  Since I already deal with low BP, she wants me to get my BP checked for several days (right before I get up from sleeping).  She’ll see what my numbers look like, and we’ll discuss the next step when I follow-up with her next Thursday.

Happy Easter, friends.  Have a blessed Sunday as we celebrate the Lord’s resurrection! 🙂
Post written byKerissa

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