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Archive for the ‘Immune Deficiency’ Category

There and Back Again

Posted in At the Doctor's, Boston, Hospital life, Immune Deficiency, Life Line, mito, Sick and Tired, Sleep, The storm on 21 August 2011| 3 Comments »

There is nothing like looking, if you want to find something.
–The Hobbit, JRR Tolkien

I had to look back at my last post (which was just six short days ago) because so much has transpired over such a short time. Although there were some frightening periods, we have much to be grateful for. The most important is your support. It means so much to me to read notes of love and encouragement. I could not make it through those difficult times without it. Thank you, thank you, thank you!

I’ll try to go through looking and the finding of the last six days as methodically as possible, but there’s much I don’t remember, so I apologize for the holes.

Just minutes after I posted on the latest saga with the positive news that my fever broke, I spiked another fever at 102.3. Despite 2 different antibiotics. Despite round-the-clock Tylenol. Although the fever was miserable, it seemed the treatments finally took hold on Tuesday morning and I went fever-free for just over 24 hours prior to discharge. During that time, we saw the Infectious Disease (ID) doctor who told us the bacteria grew out as MSSA, or Methicillin-Sensitive Staphylococcus Aureus, which is far more favorable than the nasty MRSA, aka Methicillin-Resistant Staphylococcus Aureus. We thought we were in the clear. Although he clearly still wanted my port removed, I was able to doe-eye the hospitalist into allowing us to try to save it so that I could swim and enjoy the last three weeks of summer. We got our discharge papers on Wednesday afternoon and my home health nurse met us at home for a three-and-a-half-hour review.

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I’d like to use a life line, Regis

Posted in At the Doctor's, Boston, Friends, Home sweet home, Hospital life, Immune Deficiency, Keith, Life Line, mito, music, Raising Awareness, Show of Hope, Sick and Tired, The storm, Tummy troubles, umdf on 25 May 2011| 4 Comments »

I’ve been home for nearly two weeks now. Recovery has been slow and has sapped me of most of my excess energy so many apologies. Because there’s so much to cover – and I’m having difficulties organizing my thoughts – we’re going to go about this bullet-style.

  • I’m home. I was discharged with a four-week course of IV Vancomycin (a very powerful antibiotic) at a very high dose. Because we never got those sensitivities back (i.e. what bug we’re fighting and what antibiotic is best to fight it) and my reaction to the infection scared them (though I assure you, it did not scare nor surprise me or Keith), the doctors are playing it safe. I guess that’s what they do best. I was also on Cipro (another antibiotic), but I have finished that course.

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The Great Central Line Debate

Posted in At the Doctor's, Boston, Hospital life, Immune Deficiency, Life Line, mito, Sick and Tired, The storm, Tummy troubles on 11 May 2011| 3 Comments »

Considering I am currently back at MGH for a central line infection (which is being treated as sepsis due to my plummeting blood pressures and skyrocketing temperatures and heart rate; this could, however, be due to my really screwy autonomic nervous system), I thought I’d address the issues we’re currently encountering with my current former central line (a PICC in my left arm) and the debate over what kind of line is most appropriate for the long term use we’re envisioning.

How did we get here from there?
My GI tract (from stomach to colon) is essentially paralyzed. After numerous tests and a 25-day hospital stay when it officially shut down, a GJ-tube was placed. Five days later, I was readmitted partially because the GJ-tube was not providing enough of the necessary nutrients. The solution was to place a central line (a peripherally inserted central catheter or “PICC”) so that I could receive calories and vital nutrients intravenously. At this point, the PICC and TPN were planned to be short-term aids until we could build up the feeds to my jejunum (the middle part of my small intestine). A couple months later, my GI doctor said it looks like TPN is the most viable long-term option for me.

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