Still Miles to Go

Last week was Home Parenteral Nutrition (HPN) Awareness Week.

As many of you know, Total Parenteral Nutrition (TPN) keeps me alive. It’s called Total PN because I receive essentially all of my nutrition parenterally – through a line in my chest that goes straight to my blood (“parenteral”) rather than through my gut (“enteral”). Fourteen hours every day I am hooked up to an IV line that delivers this nutrition. The other ten hours I am hooked up to a line that delivers what is essentially sugar-water which keeps my blood pressure and blood glucose levels stable. I am very grateful for these lines.

However, there is a very real and very serious downside to requiring parenteral nutrition. Part of this downside is that a line that constantly enters your blood system, right next to the heart, where it can be pumped throughout the entire body; this line can introduce bacteria and yeast to the bloodstream causing a very serious infection called septicemia. This describes the reaction the body has to foreign bodies in the blood stream. (“Sepsis” is the same reaction but to an infection in any part of the body.) It can involve changes in temperature, heart rate, blood pressure, white blood cell (WBC) count, and respiration rate.

Septicemia has seemed to find a friend in my body. And usually when it hits, it hits hard – bordering and even reaching septic shock. It’s scary and painful. My brain feels like it’s a ferris wheel, spinning upon itself, and nothing makes sense. And because my white blood cell count – white blood cells fight infection – are low/low-normal when well and do not seem respond to infection, we have no warning. In fact, doctors have nearly discounted my fever numerous times because of a lack of WBC response only to find out my body is going full-out septic just hours later.

This past Wednesday I had my GJ-tube replaced. We do this in Interventional Radiology under mild sedation. We usually struggle because my stomach begins “absorbing” the balloon that holds the tube in place so it takes a good bit of maneuvering and is usually pretty painful. Because of this difficulty, we have a standing appointment scheduled every two months so my stomach doesn’t absorb the balloon too much. This time was the most difficult. My jejunum wasn’t cooperating and the guidewire broke while still in my stomach. My O2 rapidly dropped to 72 and my heart rate rose to 165. The end product is that Interventional Radiology refuses to do another GJ change without general anesthesia so they can properly control my body’s reactions.

Within an hour after the procedure, my fever started. For the next two days, I ran a fever around 101-102 despite the use of tylenol suppositories every 4 hours. I really wasn’t feeling very sick other than the fever and a slight sore throat so I kept putting off the ER, insisting that I had IV fluids at home so I was fine, and my fever even broke for four glorious hours on Friday. We went to bed feeling the fever was due to a passing virus. The next morning we went over to Stef and Ralph’s to meet with two wonderful new friends in the mito world. About 15 minutes after we got there we realized my fever was still raging. I popped in a tylenol and prayed it would pass. After almost two hours, it was higher and I was feeling worse.

Long story short, that afternoon and night brought on fevers as high as 103.5 through the tylenol, mildly elevated lactate levels, the discovery of a pancreatitis flare and gallbladder dysfunction, and a really delirious Chelsea. The worst (or possibly best) part was that I was so confused and generally out-of-it that I don’t really remember much but the pain. Thankfully, I have Keith to remember the important stuff. Apparently my floor doctor was really nice and a nurse rubbed my back with oils. After just a few hours of drawing the cultures, gram positive cocci was growing. We are still waiting on sensitivities to antibiotics but we’ve been running Vanco, Cipro, and one other new-to-me drug trying to break the fever. Over 24 hours after I went septic I was still running fevers of 100.8-102.1 despite tylenol and ice packs. I was having short bursts of clearness and I even got halfway through a game of Zombie Fluxx with Keith before vomiting all over the bed/playing surface. But on whole I was still pretty confused and quite in pain. Fortunately, I did get the chance to speak with both my mom and my dad.

This morning we are on our forth course of Vanco and my fever just broke a couple of hours ago. I can’t tell you how good that feels. Especially because it was running 102-103 the entire night before it broke. I’m still having difficulty with words (i.e. finding the correct ones), but thanks to Keith I have a walking lexicon and I’m hoping that it’ll pass with time as my body gets stronger. I’m planning on using how good I feel to rest up since I know I haven’t been sleeping well just based on how I’m feeling. Better, but exhausted. Today we’ll see infectious disease (ID) about the identified Staph aureus in my blood (hopefully after we discover the sensitivities that will include the Vanco) and even more hopefully we’ll discover it’s not Methicillin-resistant, aka “MRSA.” Finally, today will include a blood transfusion as my “moderate anemia” became “severe anemia” and can no longer be ignored.

Reflecting on the past few days, I realize just what it means to rely on a central line. Yes, my lines have brought me life. But that’s not without significant risks. I am grateful that they have been (so far) relatively minor. I have so many friends that have not been as lucky when greeted with sepsis. Will I lose my current line (a double-lumen Bard power port)? Yes. But it’s a small price to pay. This is what makes HPN Awareness Week so important to me. HPN is never (and shouldn’t ever be) something to be taken lightly. HPN gives so many life; but the central lines involved also threaten many lives.
I now pronounce you AWARE! 🙂

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PS I’m doing better, Daddy!  Happy birthday!!!