Wednesday, May 28, 2014

Reality Bites: TPN Grief Stage no.1 -- Shock and Denial

In the back of my mind this past February, coming home from a rather grueling admission (post sepsis plus having gone through two PICC placements in addition to a million needle jabs...I stopped counting after 30) with TPN orders, I didn't expect the need for IV nutrition to last for a terribly long time. In fact, I very badly needed for my need for IV nutrition to be brief...I have a lot of things I want to do, including visiting people close to me several states away. And in doing so, I not only wanted to be able to do this sans dangling central line in my arm or chest (depending on how long we can make this PICC last...going for as long as possible), but to also be able to eat like a normal human being.

That would be awesome.

This was as much feedback as I was getting in regard to these expectations. No, these were not hopes. They were expectations. Demands even. I was demanding the Universe to give me new digestive organs tomorrow or even RIGHT NOW.

If you think moral from a tiny potato is meaningful, you may be in a state of denial.

Grief Stage no.1 -- Shock and Denial: Stupid Stuff I Did and/or Believed

  1. I believed in "The Power of Positive Thinking: I like to think that I make well informed, educated decisions. I like to think that if I have read a book by, say....Eckhart Tolle...that I wouldn't be so foolish as to apply some of his principals in lieu of my doctor's medical advice. But I did! I wonder at times why my treatment team lets me make horrible decisions without demanding my enrollment in an asylum, as I am clearly demonstrating that I am temporarily insane. For instance, the third week of March the doctor who follows my nutrition and gauges my hydration needs wanted me to run just water at 10cc/hour. The first and second nights were just horrible. I could not sleep and I started to vomit. So I had a great idea: I would run formula instead. What was my logic? I thought that perhaps  my body was putting out excessive amounts of bile because it was expecting nutrition, but upon receiving only water it was slapping me in the...gut. This theory had about zero basis is reality. Really, zero. I made this up our of nowhere. I was aware that I had made this up out of nowhere. So the third night I started Vital 1.2 AF at 10cc/hour and by the 8th hour I was not just vomiting but gagging odd colors that I was not aware one's body secretions could morph into. MY BRIGHT IDEA WAS TO TURN THE RATE UP AND SHUT MY TPN OFF. WHY?! Why would I do this to myself?! The answer: I don't remember. I don't remember, and then I ended up in hospital...that was the admission that turned up the IBD (inflammatory bowel disease) flare and started the steroid regimen.
  2. I disconnected my gastric decompression system: Why would I do this? It's unsightly, and I didn't feel like it. More irresponsible crap. I just didn't want to. Maybe my body would just get over it by not complying with the demands of constant decompression. Know what happened? I vomited. Who didn't see that coming? To be honest, no one saw the consequence coming. I actually ended up vomiting so much I was hospitalized for hyponatremia, severe dehydration (and I was running at the time TPN formula that was 3L in size), and the usual nausea/pain control. This should have been my wake-up call. I should have realized that not only can I not use my GI tract...for anything...but I cannot even go without gastric decompression. Ergo, I should not, not not put anything into my stomach (remember, the tube I used for feeding goes into my small it's just sort of hanging out). But can't foresee bad things happening when I want something badly enough
  3. I ate for a few days: You already know this one. I still ran my TPN, but I added food to the mix because I clearly don't know what gut failure means. Gut failure cannot possibly mean that those organs have ceased to function...right? Who does this happen to?
It happens to me. It happens to me, and when I don't feel like being sick anymore, I pretend I am not...but that doesn't mean that I've stopped being sick. Now I am just a basket case who happens to lack a functional gastrointestinal tract as well.

There are times even now where I feel like I have just been dreaming one very long, unnecessarily detailed dream. My TPN pharmacist is a figment of my imagination. I don't own things like a sharps container and Sani-cloth, so I have no idea what industrial cleaner and vanilla smells like (FYI--IT'S HORRIBLE!), and I'm still getting stabbed over and over in the ER. I didn't have to have my PICC replaced randomly one afternoo

Except..these things are true. I do have a sharps container that is traded for an empty one weekly. I have a blunt, hilarious, detail oriented nurse who I forget is only here because my care plan warrants a nurse. I have been through eight boxes of alcohol cleaning pads and four rolls of Glad Press-n-Seal since March (I count odd things...). 

I only know these details because they are real. They are happening. 

Here is a curious thing that I am learning not in just this process, but even in the meeting those friends that I have found and loved and  lost in the chronic illness community: this grieving process is not like climbing a ladder. In the next few days as I detail the grief stages as it relates to my experiences of realizing that I am TPN dependent for the foreseeable future, there will be times as I describe the fourth stage that this first stage echoes. This is the case with anything that has been given to you that you do not like, or taken from you that you feel that you cannot live's very difficult to feel the actuality of the situation. There are still days where I grab my phone to call my brother Philip because I cannot remember the last time I spoke to him...only to remember that he passed on five years ago. It's impossible to fathom that for the rest of my life, I cannot call or text or fight with him. I will never punch him in the stomach again. He will never hug me again (we had an odd, special type of bond).

And with this: I have no reason to buy silverware (save as a housewarming gift). The ramen noodle cookbook doesn't apply to me. Crazy new marketing-ploy fast food creations have come and gone and I have not tried them. And I know this sounds funny and while it is, it's also very sad. I cannot grasp fully that the same foods the whole world is demanding the populace to consume will cause me great harm, intense pain, and will induce violent illness. 

I imagine that it will be the same as losing a loved one. There will be days where I will be very aware of what is happening (like delivery day) and others where...not so much (as in the cultural documentaries that I watch frequently).

To end this, here is my new fangled bile bag system:

Someone asked me if this was a purse, while another asked if it was a water bottle Smiley. No sir, I'm afraid it's actually the complete opposite. 

This is a reusable leg bag by Coloplast. I already had a doctor's order for my leg bags since coming home from the hospital (I was getting them on Amazon...yes, Amazon not only carries them, but the price is even right)...but they would wear out at inappropriate times such as wheelchair transfers, the nights I actually do sleep, and out in public. Plus, I was running out of ideas on how to conceal the stupid thing underneath my clothing. I'm already packing a G tube, a J tube, and it's too hot in mid Missouri for Bermuda shorts (and it's only May). All I did was cover it in decorated packing tape, and I use the straps either tied to belt loops or threaded through the leg and waistband of my undergarments (because you wanted to know that). 

This bag is 500 or 600 cc, and plugs into G tubes as is (no extension tubing required), but it contains latex, for those who are allergic it would be wise to stay away.

Next is the stage of pain and which case I hope to adequately show you just how humorous this process really is in addition to the heavy burden normally associated with this stage.

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