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Archive for the ‘mito’ 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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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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One year ago, I posted on Digestive Tract Paralysis (DTP) for the G-PACT-sponsored DTP Awareness Week. As a treat, I’m reposting with the permission of my featured guest stars.

Unfortunately for me, a lot has changed in the last twelve months. Due to my worsening DTP, I became severely malnourished and the damage done to my GI system appears irreversible.  I had a GJ-tube inserted in December 2012 which has proven unsuccessful in treating my DTP.  The medications (that you’ll read about below) that once worked to “control” my dysmotility have since failed.  My motility specialist says I am likely to be TPN-dependent for the remainder of my life.  Furthermore, most of my medication has been transferred to intravenous (IV) form as I have severe malabsorption to anything given enterally (through the GI tract).  But yet, this has given me such an improved quality of life. I have more energy and less pain. My days aren’t spent worrying about getting in enough calories to sustain life.  And I can still do almost everything I could do before our various interventions. Actually, I can probably do more.

So, without further ado, I would open a window into life with Digestive Tract Paralysis. Thanks for reading!

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August 22-29 is Digestive Tract Paralysis (DTP) Awareness Week.

Because I live with DTP, I thought I’d share a little about DTP, my story, and the stories of some friends.

I have what’s called “gastroparesis.” That’s gastro– (meaning stomach) and –paresis (meaning paralysis). I also have intestinal dysmotility which has resulted in chronic intestinal psuedo-obstruction (CIP or CIPO). And that’s chronic (meaning long-term), intestinal (meaning relating to the small intestines and colon), pseudo- (meaning false), and obstruction (a blockage). Both issues are common with many types of mito.

 

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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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12 days ago our world lost a princess. 10 days ago we bid her farewell. 5 days ago she was laid to rest. And today? We still struggle to comprehend what has transpired.

Eithene was just short of her 5th birthday when she passed. We take solace in the knowledge that she is no longer in pain. No longer struggling to breathe. No longer hooked up to the myriad of tubies and machines that kept her with us. Eithene is free.

Ultimately, the pain comes not from the loss of Eithene – we are happy for her newfound peace – but from the chasm left in the hearts of those who loved her. Although it may offer little alleviation, we offer our hearts and love to mom Jessica, dad Sean, brother Gabriel, aunt Jill, and the entire Shriver-Hilliard clan. We further keep her best friend 6 ½-year-old Matthew in our hearts as he struggles with the loss of his nearly-lifetime companion.

In order to lessen their current ache, friends of the Hilliard family have taken up a collection of Visa giftcards in order to support the family during this difficult time. If you are interested in contributing, contact me at cnhertzog@gmail.com and I’ll direct you to the proper outlet. You can also make a direct PayPal donation here.

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Wednesday morning we set off for our first big adventure in nearly a year. The destination? Chicago for the 2011 UMDF Symposium. The goal is to learn more about mitochondrial disease (you know, that pesky neurometabolic disorder that we can’t seem to shake) and the current treatments and research as well as meet up with members of the mito community from across the country. We’re pretty stoked to say the least.

But it certainly wasn’t easy to get here. First, we had to apply to a bunch of grants to pay for the trip. You see, Keith’s still a grad student and my work hours are few and variable; we just don’t have the kind of money necessary for this kind of trip – or any kind of trip for that matter. Luckily, we were able to get a good chunk of it covered.

After that, we had to coordinate all the medical mess. Because I have numerous medical interventions intended to keep me healthy and happy, nothing is ever exactly “easy.” For one, I’m on 24/7 intravenous infusions to provide nutrition, keep my autonomic nervous system content, and my blood glucose stable. The infusion bags are heavy, bulky, and many. And they have to be refrigerated or the contents will become denatured and useless. Bummer.

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