Tuesday, August 5, 2014

HPN Awareness Week 2014: My Story (2014)

I open my eyes, and there is my friend Barb. She's on my couch and I am across the room in my nest.
My nest is so comfortable that I haven't left it all day.

At all.

To do anything.

I'm unsure of what the occsasion was for her to drop by, but I was positively delighted! We had so much to cover, much to discuss.

January is ending and the sun is setting. My speech is becoming more and more rapid, but I trail off, exasperated by my own words. They keep spinning in circles, and I can't seem to capture the "perfect" word needed for a particular sentence.

Barb gently offers to take me to the ER. My eyes shut, for I know I need medical attention. I'm manic and boardering insanity, and I cannot transfer to my wheelchair at all.

I open my eyes, and there is my friend Barb. She's in the other room. She has helped me out of my very comfortable nest, and I realize that I am being met with which shoes to wear. I am flustered because I cannot find the right boots.

Somehow in our lengthy, enjoyable conversation I agreed to go to the ER, as long as she would stay with me. In the van, I end up closing my eyes again. The winter stars are too many to count and they intimidate me.

I open my eyes, and there is my friend Barb. She sitting next to me on a stool while I've camped out on a cot. We can't get an IV to hold for two hours. Finally, a baby canulla is placed, I get meds, fluids start...then the IV goes bad.

This goes on for hours. There is dark and Barb eventually leaves. She will be back.

She always comes back.

I open my eyes. Another IV goes bad. Labs indicate that I am critically ill and suffering severe kwashiorkor (starvation).

I open my eyes. I have a PICC line.

I open my eyes. I have a line in my neck.

I open my eyes. I'm on oxygen.

Code 1000. Code Blue.

Father God, please carry me through this...

I open my eyes. The sun is rising. I am home and thankful to be alive.


My experience with TPN is rather...unique.

In the spring of 2013 I was put on it for a very short time. The result was inconclusive: I had contracted a line infection on my still new dual lumen Hickman catheter and became septic as a result. I spent that hospital stay on PPN, and since my gut had seemingly woken up we also did jejunal feedings and oral intake at the same time. I was so undernourished that I needed everything I could get.

But by the fall of 2013 I was in "failure to thrive" category for my height and weight. J tube had escaped my abdominal wall and experimental G tube feeding was getting us nowhere. We first discussed switching to a G/J tube (stomach tube that can drain secretion that is normally vomited while still providing nutrients and medications directly to the small bowel, where most of our digestion occurs), but no sooner had we made plans to order in the AMT G-Jet I was admitted for paralytic ileus.

Because there was so much distention as opposed to the times where there is a mass of stool (which also lands me in hospital at times), there was more concern about even continuing to use my gut. I was sent home after a two week stay so I could enjoy Christmas with my family.

January was difficult. I was only home a few times that whole month, which included moving my G tube site to a better location for draining my non functioning stomach and re-inserting a J tube. Our sincere hope was that this system would help me tolerate my tube feedings with little discomfort.

At first I was quite alright...or so I thought. But I was hospitalized over and over for critically low labs, and after being readmitted on an emergent basis following a discharge that was less that three days prior we had the TPN discussion.

Because of the pseudo-obstructions that prevent me from maintaining proper hydration and electrolyte levels and cause me to starve by clinical standards among other observations intestinal failure (IF) was added to my diagnosis list.

Since IF also stands with gastrointestinal co-morbidities, the more proper term is GI failure.

There was some horrible things that happened that admission, the most prominent being yet another episode of sepsis. This scared the hell out of everyone. In all honesty the person who probably was least concerned was me. I was far too ill to grasp what was happening to me, and most of my memories are comprised of the little I can recall along with what family and friends told me they witness and heard. I feared that this would serve as Omen -- that I would go home and one day simply not wake up.

But that did not happen.

Instead, I came home and began to fall in sync with the rhythm of Life. My words and awareness of surrounds came back.

Since starting TPN I have gained some much needed weight and have really started to seriously pursue options such as attending university and doing more and varied forms of writing. Expanding my horizons has become a practice that I not only enjoy, but rather celebrate.

There are still bumpy times. HPN means that I can get my life saving nutrition therapy here at home, and I do not live in a hospital or care facility. It is not a cure for IF or any of my other challenges.

Instead, it keeps me on this earth just a little longer, day by day, allowing me to passionately enjoy small moments a take bigger risks.

Because that's truly what life is about.

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