Monday, August 22, 2011


Over a month ago, I had a really bad week which began with allergies, but turned into more of a cold and ended with my first trip to ER for an asthma flare.  Prior to this, Asthma had always been a diagnosis that had been followed by a question mark because some of my doctors were sure I had it, but others looked at me like I had three heads when I gave my history of medical conditions.

I haven't felt the same since that week which is quite frightening.  Having Mitochondrial Disease means it takes more of me to fight illness, but I have never felt it prior to that week.  I had the achy variety of the flu in February and "bounced back", but that has yet to happen with whatever I had two months ago.  It felt like someone had opened a metaphorical valve and let out all the energy made by my mitochondria.  It is an awful feeling.

Since this post is overdue, I'll cut to the chase.  Last Wednesday I had my second appointment with my new GI at Massachusetts General Hospital (MGH).  After some small talk, he read Nutrition's note from two days prior and asked point blank, "what do you think about a feeding tube?"  I was caught off guard, but wasn't surprised.  I have been thin all my life, but recently my appetite and everything with it has taken a nose dive.  My day-to-day status changes dramatically for no rhyme or reason.  Some days I wake up and wonder if I'll be able to stand up after placing my feet on the floor.  Once I stand I wonder how many times my shoulders or the rest of me will hit the wall before I make it the five feet to the bathroom each day.

My GI understands Mito so he understands the impact nutrition, or lack of it, has on those with the disease.  The plan is for me to get supplemental feedings while I sleep (or late at night before bed) so I can get more calories than I currently am during the day.  My g-tube will not be used as my sole source of food, but it will help me get more calories and feel better overall.  I currently weigh 100lbs which is not good for someone who is 5' 5".  Its not as simple as just eating more because even when I try to eat like "normal" people, I feel full sooner than I have in the past.

My mito sister Chelsea wrote more about feeding tubes in her blog in a post very appropriately titled No Longer Starving.   

I will have surgery on 9/12 to put in my g-tube.  My g-tube will go on the left side of my belly above my Baclofen pump.  It will go in laparoscopically, which means I will have general anesthesia and will have an incision above my belly button for a scope with a light and camera at the end so the surgeon can visualize my belly to help with tube placement.  Another incision will be made for the tube itself.

While surgery is painful and certainly not desirable, I hope this will be the beginning of something that will make me feel better overall, not just increase my weight. 

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