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Archive for the ‘Keith’ Category

Brief update: Other than a brief 24-hour fever (up to 103.5) this past Thursday, I have been fever-free for nearly two full weeks. Further, there have been no fevers since stopping the antibiotics last night (Saturday)! If I can make it through the next 12 hours sans fever, I will be released Monday afternoon. Monday marks 30 days since I was admitted and brings my total time spent inpatient since mid-August up to 95 days. There have been no real strides made and the doctors have reiterated that I will be back. But we’re trying to make the most of the good days I have and want to celebrate them out of the hospital as much as possible.  Thank you for your continued support, prayers, and love.  

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Like most across this country, I spent my time this past long weekend focused on the multitude of blessings in my life. These marathon hospital stays are survived only through the kindness of the people in my life. It is difficult to know how to appropriately thank you all for what you have done for us. You have inspired and humbled me.

I am incredibly thankful that my body has protected my mind against the effects of the recent medical hell and prevented me from remembering a large portion of the worst. I am thankful that the parts that I remember are mostly filled with good and love and family and friends. And I am thankful that my family and friends fill me in on all the life that I miss while incoherent. Thank you to the family members who leave messages and send numerous texts of love. Just pure love. Thank you so much for all the cards we have received. Your words fill us with warmth and remind us how much we’re loved.

Thank you to all my younger friends who work endlessly on the artwork that adorns my hospital walls. Thank you for the e-mailed iPad drawings and the goodnight videos. Thank you for my school pictures and the drawings which constitute my wallpaper. I get questions and admiration all day. And each little glance from the corner of my eye brings a smile to my face.

Thank you to all our visitors. Despite the fact that I sleep through roughly 2/3 of all visits, you keep coming back. You bring your joy, your stories of the outside world, your smiles, and your laughter. All those good things that help to ensure that the medicine used inside the hospital will actually be effective. Thank you for playing the latest strategy games with us for hours on end. Until security reminds us that we are, in fact, in a hospital. Thank you for spending your lunch hour with me. For stopping in after your own appointments in the area. For bringing me fuzzy socks and solitaire games. Thank you for talking about the latest movies and the book you read last month. Thank you for reminding me that life goes on.

Thank you to the family and friends that help to remind us that time is still passing while we’re still impatiently inpatient. Seasons change and holidays still happen. But thank you for making sure we’re still a part of the passage of time. Thank you to my mom who helped us decorate pumpkins and my room for Halloween. Just days after I had pulled a Halloween stunt that nearly took my life. Thank you to my mito sisters for spreading out the Thanksgiving love and for being thankful with us for three consecutive days.

Thank you to the Bush/Dalton/Mahoney household (aka our “Massachusetts family”) for allowing me and Keith to stay for the four days between major hospitalizations. Thank you for sharing the giggles and smiles of my dear little munchkins. Thank you for the love and the tears. Thank you for being our family when our family is so far away. Thank you Sarah for braiding my hair while I was in the MICU and bringing some beauty to White 9 with your Physics equations all over the white boards. Thank you Liz for crossing multiple state lines to bring some holiday cheer and sending me balloons to keep me company when you are unable. Thank you Stef for holding my hand through it all – even while I hated you deeply as the 108.6 fever made me the most obstinate human being in existence.

We are so moved by the actions of our loved ones. But some of the most moving blessings have come from people I hardly know – or don’t even know at all. From people I have only met in passing. Or from people who know of me solely through common friends or family members.

Over the summer, Keith and I travelled 5 hours to upstate New York to attend the Mighty Matthew Benefit. Matthew and I gathered quite an audience of his school friends and we fielded questions about mitochondrial disease and life with our “tubies.” Matthew told one of these friends that I was very sick and in the hospital for a long time. When Matthew came to visit again, he brought with him a get well letter from his friend included with a school photo. It brings tears to my eyes to know that Matthew is so well connected with so many kind and genuine children in his youth. And to know that those 45 minutes resonated with this child and his life was changed by learning more about mitochondrial disease. Thank you to this young man for your kindness and concern. And a huge thank you to his parents for raising such a proper and considerate young gentleman. It’s so reassuring and touching to that see children like Nate are in this world, making it a better place.

About ten years ago, a young girl named Brittany contacted me. She was a good friend of my very close cousin and had recently been diagnosed with chronic fatigue syndrome. As I was dealing with my own chronic medical issues, my cousin passed on my contact information, and Brittany and I helped each other through a particularly difficult time in both of our respective lives. It helped both of us to have another young girl dealing with health issues. Although we lost contact over the next few years, my cousin contacted me to let me know that Brittany had lost her life in a car accident. Her death radiated throughout her community. I am reminded yearly of the love she left in this world as my cousin’s family participates in an annual run in her honor. This year, I felt her love even closer as her uncle, Geb B., completed his first Iron Man competition with my name written next to Brittany’s on his sleeve. I feel so honored and loved to have a place next to Brittany’s. Thank you.

My mom has made the 3000-mile trek from her home in California to our Boston-based hospital twice since September. The second time she came she noticed that I bring my own pillowcases from home during each stay. A combination of allergies and homesickness inspired this tradition. In order to keep my sanity, I make sure that my pillowcases are the most vibrant and happy ones that I can find. Shortly after that visit, my mom put a call out to the long list of family and friends who have been following our story and this Thanksgiving, we celebrated with the blessings of nearly two dozen different families who sent the most vibrant and unique pillowcases that they could find. In addition, my aunt sent a beautiful ribbon quilt and a family friend crocheted a bright and happy blanket.

I just don’t know if I can say it enough. Thank you. Thank you to everyone. You are all so amazing. Thank you, thank you, thank you. To those who have called. To those who have visited. To those who have sent letters, e-mails, and care-packages. To those who have sent their prayers and positive thoughts. To those who have placed us on prayer lists. To those who have spread my story and the need for awareness about mitochondrial disease. To all those who have shown such compassion and care. Thank YOU.

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This is far overdue. I have done such a poor job updating here (or anywhere for that matter) in the last few months. So much has happened and so much has changed – and is changing, daily – that it’s difficult for me to make sense of it all. It’s difficult to identify the meaningful moments and not get lost in the drudge of daily life. I’ve sat down so many times in the last couple of months to write an update, but the words are difficult to write and the ideas are so difficult to grasp.

As many of you know – and probably an equal number do not – one of my college degrees is in mathematics. The last few months have been scary and painful and disheartening in so many ways – and yet uplifting, encouraging, and reassuring in many other ways – that one of the only ways to make sense of this time is through numbers. Numbers don’t lie or change. Numbers have no biases or inert fear. Numbers just are.

So I figured that if the best way I could make sense of this time was through numbers and that the easiest way to share was through these numbers. So without further ado, the last few months. In numbers:

  • Since August 13, 2011, I have spent a total of 65 days inpatient. That is over 3/4 of the last three months.
  • There have been a total of 5 admissions. The longest admission was 36 days.
  • I’ve spent time on 5 different floors. Six consecutive days were spent in the MICU (Medical Intensive Care Unit).
  • I have encountered sepsis caused by 8 different bacteria and yeasts. Three times I went into severe septic shock. Twice they thought I wouldn’t make it.
  • The highest fever I reached was 108.6 degrees. It resulted in a 6-minute seizure. Other than my typical brainwave slowing (evidence of my ongoing encephalopathy), I don’t have lasting brain damage other than mild episodes of confusion. I am very lucky.
  • During the last three months, I’ve had acute failure of three different organs: my liver, my pancreas, and my heart. The lasting damage, thus far, has been relatively mild.
  • I have been placed on 9 different antibiotics at a single time. They handed Keith a page with antibiotics listed and had him cross off all that I am either allergic to or with which I have adverse reactions. They placed me on all that remained.
  • I have only been off antibiotics for 25 hours during the last three months. I then spiked a fever of 104 and was immediately placed back on antibiotics.
  • The longest amount of time I’ve been home since mid-August is 13 days. The shortest amount of time is 4 days.
  • Today, I returned to MGH – just four days after I was last discharged on November 2nd. Keith had to call 911 as my fever spiked to 104 (from 101.8) in about 40 minutes. I became unresponsive while vomiting bile and tremoring intensely. My heart rate was 180 beats/minute during this time. This is 2-3 times what it should be. I was taken to our local hospital to be stabilized and then transferred to MGH 90 minutes later. I am now stable and my fever is under control, while being monitored closely. My pancreas and liver are showing signs of acute failure. All of my liver function tests are quite elevated and my pancreatic enzymes are over 20 times higher than the upper limit of normal.
  • The recurrent sepsis (bloodstream infection) is caused by two things: (1) an accumulation of “bad” bacteria in my colon which “translocates” (spreads from my colon to bloodstream); and, (2) a severe immune deficiency affecting my T-cells (white blood cells that recognize and remember antigens in the bloodstream).
  • During one of the admissions, I had surgery to removed my gallbladder, which was inflamed and causing pain. During the surgery, I also had a tube placed directly into my small intestine. I now have two tubes on my abdomen: a gastrostomy tube (in my stomach, used for venting) and a jejunostomy tube (a tube in my small intestine, used for minimal medications and “trophic” feeds of 5 ml/hr, 4-8 hrs/day, 3-4 days/week).
  • My “battle scar” from the surgery (an open cholecystectomy and j-tube placement) is 12 cm long and consists of 22 staples. It spans from my belly button to my lower rib cage.
  • Due to my poor peripheral access, need for intravenous nutrition and medications, and rate at which I need to infuse fluids and medications, I can’t be without a central line longer than 2-3 days.Since August, I have had 10 different central lines (semi-permanent IV lines): 1 port-a-cath, 3 IJ lines, and 6 PICC lines.  The longest amount of time I was able to keep one was 15 days.  The shortest amount of time was less than 2 hours.  Port-a-caths can be permanent, PICC lines can usually last 6-12 months, and IJ lines can typically remain for up to 2-4 weeks.
  • In the last three months, I have required 5 blood transfusions due to my extremely low blood counts.  Thank you, blood donors.
  • While I was inpatient, our hometown (North Chelmsford) received 6-8 inches of snow and 80-90% of the town lost power. Our apartment lost power for over 48 hours. Luckily, we were unaffected as we were still inpatient. When I was discharged and home for 4 days, we still had 1-2 inches of snow. It made me smile.
  • My mama traveled 3000 miles to come visit me while I was in the hospital. Twice. Definitely a “Best Mama Award”-winner.
  • Other than the nights that my mom stayed with me, Keith spent every night by my side. 58 nights.
  • The strength gained from the thoughts, prayers, and love sent and felt by our family, friends, family friends, acquaintances, and even complete strangers has been immeasurable. We remain strong because you fortify our strength. Thank you.

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Just about two weeks ago, we got a break from all the crazy weather here in Massachusetts – severe thunderstorms and even tornadoes – when a sunny piece of Texas came to town.

It’s difficult to describe how much I love my dear cousin, but she always manages to bring smiles and sun to wherever she is. She lit up my wedding when she agreed to be one of my two bridesmaids nearly 3 years ago.

She makes family gatherings more than just tolerable (just kidding… I love ALL my family) but incredibly enjoyable:

She also sends me those little reminders to smile.

(more…)

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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.

(more…)

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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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Note: I wrote this blog nearly a month ago and am just now getting around to posting it because a good friend has been asking for it for ages and I thought she could use a small pick-me-up. This one’s for you, Liz…

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Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

This winter has been one full of challenges, stresses, adaptation, loss, learning, sickness, and love. Yes, love. Without it, I’m not sure I would’ve come out as relatively unscathed on this end.

This winter, New England received more snow than it had in years. It was blizzard after blizzard. It was cold and unrelenting. Even worse, my body appeared to be taking lessons.

One thing that I’ve always prided myself on is being able to rise from just about anything and everything stronger and smiling. After December, I was petering on the edge, still smiling, but straining and struggling not to lose myself. But after the second month of medical hell, I wasn’t sure that I wasn’t going to rise.

(more…)

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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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