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Archive for the ‘Sick and Tired’ Category

In the depth of winter, I finally learned that within me there lay an invincible summer. ~Albert Camus

Sometimes those of us with chronic illness get so caught up in the can’ts. The shouldn’ts. The mustn’ts. I decided to focus this summer on the things I can do. From embracing the lives of loved ones lost to adventures in lands (not-so-)faraway. So we celebrated, joined, conquered, ventured, traveled, laughed, cried, and smiled. And we experienced life. It didn’t matter that I did most of it hooked up to at least 3-4 tubes at a time. It mattered that I did it.

Now that the summer comes to a close (thank you, labor day), I thought I’d go through the tradition of writing the back-to-school essay “What I did this summer.” Then I rethought. And decided I’d show you.

What I did this summer:

{And wished her Happy Birthday}

{At the 2011 UMDF Symposium in Chicago}

{With my Great Aunt Arden at the Sears Willis Tower}

{Lab safety is a must while tutoring}

{Sisters Day Out – Southwick Zoo}

{First time at Niagara Falls – Maid of the Mist}

{Seneca Falls, NY – With two of my most influential people – On the bridge from one of my favorite movies, It’s a Wonderful Life}

{For the first time since my license was revoked for seizure activity}

{TPN bag, enteral tubes, and all!}

{White Mountains in NH with my favorite in-laws}

{Haven’t attempted this since I was a gymnast – take that mito!}

{At the 2011 Mighty Matthew Benefit in Plattsburgh, NY}

{We love you, Princess Eithene!}

{So blessed to live in Boston, the Medical Mecca of the World!}

{With 4 adults, 2 kiddos, 2 dogs, and a partridge in a pear tree}

{Disappointing from the weather standpoint, but fun nonetheless}

{With a grand closing to a grand summer!}

And no one can say I didn’t do. Because I did. I really did.

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There is nothing like looking, if you want to find something.
The Hobbit, JRR Tolkien

I had to look back at my last post (which was just six short days ago) because so much has transpired over such a short time. Although there were some frightening periods, we have much to be grateful for. The most important is your support. It means so much to me to read notes of love and encouragement. I could not make it through those difficult times without it. Thank you, thank you, thank you!

I’ll try to go through looking and the finding of the last six days as methodically as possible, but there’s much I don’t remember, so I apologize for the holes.

Just minutes after I posted on the latest saga with the positive news that my fever broke, I spiked another fever at 102.3. Despite 2 different antibiotics. Despite round-the-clock Tylenol. Although the fever was miserable, it seemed the treatments finally took hold on Tuesday morning and I went fever-free for just over 24 hours prior to discharge. During that time, we saw the Infectious Disease (ID) doctor who told us the bacteria grew out as MSSA, or Methicillin-Sensitive Staphylococcus Aureus, which is far more favorable than the nasty MRSA, aka Methicillin-Resistant Staphylococcus Aureus. We thought we were in the clear. Although he clearly still wanted my port removed, I was able to doe-eye the hospitalist into allowing us to try to save it so that I could swim and enjoy the last three weeks of summer. We got our discharge papers on Wednesday afternoon and my home health nurse met us at home for a three-and-a-half-hour review.

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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.

 

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I’ve been home for nearly two weeks now. Recovery has been slow and has sapped me of most of my excess energy so many apologies. Because there’s so much to cover – and I’m having difficulties organizing my thoughts – we’re going to go about this bullet-style.

  • I’m home. I was discharged with a four-week course of IV Vancomycin (a very powerful antibiotic) at a very high dose. Because we never got those sensitivities back (i.e. what bug we’re fighting and what antibiotic is best to fight it) and my reaction to the infection scared them (though I assure you, it did not scare nor surprise me or Keith), the doctors are playing it safe. I guess that’s what they do best. I was also on Cipro (another antibiotic), but I have finished that course.

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Considering I am currently back at MGH for a central line infection (which is being treated as sepsis due to my plummeting blood pressures and skyrocketing temperatures and heart rate; this could, however, be due to my really screwy autonomic nervous system), I thought I’d address the issues we’re currently encountering with my current former central line (a PICC in my left arm) and the debate over what kind of line is most appropriate for the long term use we’re envisioning.

How did we get here from there?
My GI tract (from stomach to colon) is essentially paralyzed. After numerous tests and a 25-day hospital stay when it officially shut down, a GJ-tube was placed. Five days later, I was readmitted partially because the GJ-tube was not providing enough of the necessary nutrients. The solution was to place a central line (a peripherally inserted central catheter or “PICC”) so that I could receive calories and vital nutrients intravenously. At this point, the PICC and TPN were planned to be short-term aids until we could build up the feeds to my jejunum (the middle part of my small intestine). A couple months later, my GI doctor said it looks like TPN is the most viable long-term option for me.

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While inpatient with mitochondrial disease, you’re often an enigma. Most of the health professionals have either never heard of this disease or might vaguely remember it being mentioned back in medical school. And those who have heard of it often have misconceptions (e.g. “all people with mito have some sort of mental delays/retardation” or “mito only affects infants and toddlers”). That’s why I make each and every admission a chance to educate about mitochondrial disease.

Because it’s a complex disease and involves “difficult” vocabulary, it’s easier to describe with analogies. Usually we use the “my batteries don’t work efficiently” analogy, but there are so many other ways to look at the disease. Recently, Chuck Mohan, the CEO of the United Mitochondrial Disease Foundation, made an extensive list of other ways to describe mitochondrial disease. Because it might just help one new person understand it, I’m going to share his list here:

Mitochondrial Disease is like:

  • Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.
  • Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).
  • Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses.
  • That dream you have where you are trying to run away from danger but you just can’t move? Yep, that’s mitochondrial disease.
  • The way you feel after running a 50 yard dash compared to the way you feel after running a 50 yard dash with a 50 pound knapsack on your back.
  • The way you feel after working an 18 hour day or 18 days without a day off. Well, if you had a mitochondrial disease you’d probably feel that way after breakfast.
  • Buying a perfectly good Volkswagen Beetle with a 110 horsepower engine. It’s a great looking car and it runs terrific. Now take out a ring, gum up the valves, add some sugar to the gas tank and put in an old head gasket. The car still looks great but now it will only generate about 50 horsepower. That will get the Volkswagen around the flat streets of Kansas on a spring day, but now load it up with 3 of your hefty friends, or more if they’ll fit, with a trunk full of luggage and take it to the hills of Western Pennsylvania on a 90’ day. It won’t make it! But it still looks great!

For more from Chuck Mohan, go to umdfblog.com.

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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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