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Archive for the ‘The Future’ Category

Today you are You, that is truer than true. There is no one alive who is Youer than You.
-Dr. Seuss

Sometimes it surprises me how happy I am. How comfortable I am in my own skin. A year ago, I’m not sure if I could’ve seen myself this happy despite all that has changed (my zip code, my health, my occupation, my income, my aspirations, etc.). But I’m honestly, truly happy.

Keith and I deal with a ton of stressors with our daily life that shock many people. For instance, every day this week, I’ve had at least one medical appointment, over half of which were in Boston. (This is not out of the ordinary.) In addition, we’re watching my niece and nephew while my sister recovers from surgery. (This is something that Keith likes to call “birth control.”) We also deal with daily medical regiments including IV nutrition, stoma care, catheterizations, sterile procedures, and medical interventions. (This is in addition to Keith’s full-time student status and my work tutoring, researching, and volunteering.)

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Once you choose hope, anything’s possible. -Christopher Reeve

Four months ago I got my muscle biopsy results. It showed severe deficiencies and came with the official diagnosis of Mitochondrial Disease. Although I had lived over a year with a “clinical diagnosis,” it had suddenly become real. Really real. I found myself at a crossroad: I could breakdown and cry; or, I could do something about it.

That night I spoke with my best friend and expressed how I felt. Less than a year earlier, she had had the same conversation with her physicians. She heard those same words: “You have mitochondrial disease.” She felt the reality come over herself. And she chose to fight back.

We spoke for a long time about what we could do. How we could change the future. How we could keep this horrible disease from consuming our every wish and dream. Our every hope.

It was on that night that the Show of Hope was first conceived.

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Author’s note: This is a journal entry I wrote the day after my 26th birthday. While much has changed since then, the core of this entry has not. Therefore, I decided to share it again, the day after my 27th birthday, because it still rings true.

Of all the people that I admire – and there are many – three repeatedly come to mind:
1. Gandhi, because he said, “be the change you wish to see in the world”;
2. Ang, our angel, who lived that change for each of her 22 years;
and
3. My mother, because she reminded me of the belief I shared with Ang and Gandhi.

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After over two glorious months of freedom, I’m back at the Chateau de MGH. I was hoping it’d be a quick stay and I’d be out by now so I put off an update until I could include the good news of discharge, but that doesn’t look like it’s happening too soon. So here’s a quick recap of the last few days and the current plan for the future.

As many of you know, I struggle with chronic intestinal pseudo-obstruction (CIP or CIPO). Because of the CIPO, my intestines (both the small bowel and the colon) act as if there’s a physical block that keeps me from passing stool or gas. The result is abdominal distension, vomiting, nausea, and abdominal pain. This condition is complicated by any sort of illness or trauma. Two weeks ago, I had a GI bug that resulted in ileus (no or very diminished movement in the bowels).

Prior to going to the ER on Wednesday night, Keith and I had tried our entire home arsenal to get my bowels moving: 3 bottles of Magnesium Citrate, a GoLytely bowel prep, and 2 Fleet enemas. Nothing produced anything. And all of this is in addition to my usual maintenance treatment of 4 doses of Miralax and 1/2 a bottle of MagCitrate each day. We were at a loss as this was triggering severe nausea and pain. Because we didn’t want to cause an electrolyte imbalance with all the continued strong laxatives, we headed to the Lowell General ER. At this point, I thought it’d be a simple overnight stay at our local hospital (LGH) and it’d be resolved in the morning. Keith, on the other hand, predicted a stay through – at least – the weekend and that they’d transport me to MGH in fear of breaking me. Keith won that bet.

The nurses hooked me up to fluids (in addition to my own) and some IV Zofran and set me up for an abdominal x-ray. The x-ray didn’t look good, apparently. After telling the ER doc what was going on and that I had primary mitochondrial disease, he immediately called MGH to have them prep a bed for me. With in a few hours, I was in the ambulance with my favorite medic (yes, it’s sad that I have a favorite…) and off to MGH in Boston. They hooked me up with more Mag Citrate and a soap suds enema. Still no luck. I had officially earned myself an overnight stay in the Emergency Department Observation Unit.

Every hour in the EDOU, I took Lactulose (another powerful laxative). I had no movement and the distension and pain just increased. Around 2am, I was brought in for another x-ray. It looked worse and suggested that I had an obstruction. So they started decompressing and draining my stomach through the G-tube and I was rushed into a CT scan about an hour later. I took a two hour nap back in my bed and was awoken by the attending doc. There was no physical obstruction, but severe air accumulation throughout and packed stool in the cecum and ascending colon. I had earned myself another night, but now I was up in my usual hospital home, Phillips House. (For anyone who doesn’t know, Phillips is like the hospital suites. These private rooms have mahogany accents, a couch, a desk, a mini-fridge, and room for a guest to stay. Also, we have satellite TV and a DVD player.) The team in Phillips knows me quite well and busily got to work when I reached my room around 7pm on Friday evening.

After my GI doctors were contacted, we started another course of GoLytely, hooked up to D10, and increased the pain and nausea medications. Unfortunately, all this drama had meant that I only slept for 5 hours out of the past 55 or so. This lack of sleep set off a bad dystonic storm (the explanation of a “dystonic storm” is halfway down the page) and caused my autonomic system to go wacky until I was able to fall asleep. I slept straight through 16 glorious hours. This morning – or should I say afternoon? – was much improved on the neurological end, but just as bad for my GI system.

My hospitalist decided that it was time to consult the surgical team to see if they had any other ideas that would (hopefully) keep me from the operating room. First, they felt that I had something called “Ogilvie’s syndrome,” which is just a severe acute episode of pseudo-obstruction of the colon. Apparently, it can be pretty dangerous so we’re trying to treat it as aggressively as possible without disrupting my delicate metabolic stability. One solution they came up with isn’t too pleasant so if you feel as if you already know me well and don’t want to know me THAT well, I’d advise skipping the following paragraph. Seriously.

The first idea was to add gastrografin to the regiment. Gastrografin is a common prep for CT scans; it just happens to have the side effect of producing diarrhea. We figured that’d be welcome, even if not too likely. Additionally, a rectal tube was inserted to help decompress my colon and hopefully that will get things moving once again. The tube isn’t exactly comfortable, but I’d do anything to help. Anything.

(For those who skipped, you can start re-reading here.) The other solution, if the above doesn’t work, is a drug called Neostigmine. It’s commonly used for myasthenia gravis and is effective at stimulating contractions in the colon (read: pushing out poop!). The downside is that it causes bradyarrhythmia (significant slowing of the heart rate) so it requires me to be moved to the MICU (medical intensive care unit) to be administered so I can be very closely monitored. Because this sounds likely, we’ve decided that it’s very lucky that I usually have moderate to severe tachycardia (abnormally fast heart rate) to begin with so hopefully it won’t lower as dangerously for me.

Luckily, we have so many people who love and care about us and make the hospital a much easier place to be. Stefani and Linda (“Nana”) stopped in on Friday afternoon so that Keith could get our car inspected and pick up some supplies from home. A few of our awesome friends from Brandeis stopped by Friday night to distract us with fun games. My tubie sister, Sarah, who is also currently in patient at the Chateau, came up for a quick visit as well. Thank you to everyone who has called and sent their love and prayers our way. I don’t know if I could ever tell you how much it means to us to have so many people by our side through this ugly war.

Keith is now hooked up with his favorite free hospital meal (Gardenburger with Tapioca pudding) and True’s loving the attention from the oodles of nurses that find excuses to come in to visit with her. And me? I’m still waiting for poop.

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And now my requisite giggle that accompanies the posts filled with the icky…

This time on “You Can’t Make this Sh*t Up”:

Would you believe that my neighbor in the Lowell General Emergency Department (prior to being transferred to MGH) brought her dead husband with her in an urn? Yep. She also cried and screamed about how he used to beat her incessantly. I think this is an odd case Stockholm Syndrome being inflicted post-mortem…

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Everybody’s got plans… until they get hit.
Mike Tyson

Before the recent one-two punch from infection after infection, and before the internet snafu and ensuing struggles with Comcast, and before the exciting week with visitors, and before I was finally able to get back to work this week, I had great plans. Well, I guess not great plans – they were nothing compared to those of my childhood, or those of a naive high schooler, or even those prior to the latest major health struggles back in December and January – but they were plans.

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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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