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Archive for the ‘Hospital life’ Category

[This is Part 3 of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Today’s blog is brought to you by the Letter “W.” Yep, we’re going to talk about the Who, What, Where, When, and ever-important Why involved in the use feeding tubes. There are tons of types tubes and even more reasons why an individual might get one. So I’m going to give you and general overview of the primary classes of tubes. I know everyone who has a tube, or “tubie,” has gotten those looks and questions. Truth is: most people don’t see tubes everyday; they may be curious, weirded out, or even afraid of them. When I first got my GJ tube, my nephew – the sweetest, most empathetic kid you’ll meet – was so incredibly gentle with me. I think he thought he was going to break me by giving me a hug. It took him a while to warm up to it and we talked a ton about it, but I’ve got those bear hugs back.

Tubes aren’t something to be scared of. Tubes don’t necessarily equate to loss of freedom and worsening of disease. In fact, feeding tubes prevent the progression of disease! And I have more freedom with my feeds and infusions than I have had in years. There are very few people that I know with tubies who don’t feel the same.

So let’s get rid of all the stigmas attached to tubes and take a journey with some of my incredible friends who just happen to also have tubes…

I want to issue the same warning I did yesterday: there are some pictures in this post of medical interventions; if this makes you uncomfortable, I advise you not to read on! 🙂

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I’m home and adjusting. After two hospital stays adding up to 40 days out of the last 46, I’m experiencing some major culture shock. It’s weird being able to do what I want when I want. And ironically, I’m even struggling to adjust to sleeping through the night without a vitals check every 2 hours. Nevertheless, I’m happy to be home.

It hasn’t been easy between 16-20 hour sleep days and multiple syncopal episodes each day due to worsening dysautonomia, but I’m learning to adjust to my new “normal.” We know it will take time, but I can’t say I haven’t been frustrated.

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In the last month and a half, I have spent 40 days and 40 nights in the confines of Mass General. While I’m not yet home from this ordeal, I can confidently say that a plan is in way if they decide not to discharge me today. (The paperwork has already been started, but you never quite know…) I will be honest with all of you and say that my spirit (which I once though to be unbreakable) was starting to crack. But my dear sister Stefani would not let that happen. She and Beast devised a plan to break me out of this brig if my medical team was still holding me hostage.

Note: The captions are Stefani’s original captions.

My sidekick - waiting to rescue his princess (True)

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So I haven’t updated much because there’s really been very little change. I’m still stuck in a hospital room, unable to get the necessary nutrition through tube feeds, bored out of my mind. For the last week or so, I’ve heard that I’ll be going home “tomorrow.” I’m pretty sure that’s medical speak for “never,” but I’m still hopeful. The pancreatitis attack is over and my aspiration pneumonia has cleared. I feel fine and just want to go home. I suppose the positive is that we’re finally getting things in line so when I do go home, I won’t end up back here.

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It’s hard to describe exactly how I’m feeling.  My emotions are still incredibly complex and difficult to decipher.

For well over a year, I’ve lived with a “clinical” diagnosis of mitochondrial disease, the result of a lifetime of various symptoms and presentations. What does this entail? Many of my doctors felt that my symptoms and test results were indicative of mito. And they were going to treat it as such. Unfortunately, there is a bit of a stigma attached to a clinical diagnosis. Both in the medical field and among other Mitovians (families affected by mito). Physicians don’t take it seriously (no “proof”!) and frequently suggest a psychological basis (either on behalf of the parent or the patient) to explain the multitude of medical issues – despite tests implying otherwise. And the mito community itself frequently scoffs at clinical diagnoses. Despite all the good we gain from the camaraderie provided by the amazing support network of the mito community, there is also plenty of judgment and doubt.  Some diagnoses are deemed “more serious” or “more true” based on the diagnosis method.  It’s unfortunate, but true.

There are diagnoses based on muscle biopsies (these seem to be given the most credence, despite the high false negative rate).  And there are diagnoses based on genetic mutations or deletions (these are usually given a good bit of respect, but have a high false positive rate, because although mutations are present, they may not be expressed).  Finally, at the bottom, we have “clinical diagnosis.”  These are generally symptom-based with a few objective studies and laboratories to back up the decision.  These are often regarded as untrue, made-up, without basis.  And it sucks that patients aren’t given care by doctors just because these clinical diagnoses are not believed.

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About 7 hours after I posted my last blog, I was finally settled in my room. By that time, my temperature had started rising. Before I fell asleep (around 8:30pm), my temperature had risen to 100.6. That’s nothing, my body told the nurses, just you wait and see! But the next vitals (around midnight), my temperature had risen to 101.8. I can’t still do better than that. My temperature at 4am was 102.4 and rising. Almost there… I hit 103.2 before it started going back down.

But my temperature wasn’t what really had them worried.

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I checked back in to Chateau de MGH last night. Yup, they just couldn’t keep me away!

Over the last couple days, I had been getting increasingly worse sharp pain in my upper left abdomen. I joked to Keith that my spleen and pancreas were duking it out. But I hadn’t pooped in three weeks so it could just be constipation, right? We started pushing mag citrate through the tube. 3 bottles over 30 hours, to be exact. No success.

It hurt to move, it hurt to breathe, it hurt to sneeze and cough and burp. I laid on the couch in the fetal position all day on Tuesday with the occasional moan or whimper. Keith threatened to take me to the ER on numerous occasions. I resisted. I had just escaped; there was no way I was going back so soon. I gave in to pain medication and took 4mg dilaudid PO. I didn’t even get a slight buzz… there was something wrong with that. Four hours later, I crushed another 4mg and put it through the tube. Still no relief. No wooziness even. What was wrong? Why wasn’t my body absorbing it?

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