What Mitochondrial Disease Means to Me

Unlike most people, the first word that comes to mind when I think of Mitochondrial Disease is friendship.  This may come as a shock since this disease does not have a cure, nevermind any proven treatments.  I feel if it wasn't for this disease I would be a different person all together.  My personality would probably be different and I may be interested in different things.

Because of Mito, I have three mito sisters...

Chelsea, myself, Sarah and Stefani after sledding in February(?).

I know for a fact that if I did not have Mitochondrial Disease I never would have met my mito sisters.  I knew Stefani on Facebook long before finally meeting her at last year's UMDF (United Mitochondrial Disease Foundation) Walk-a-thon where I also met Chelsea.  Ironically, Chelsea and I used to live within 4 blocks of each other, but we didn't actually meet unit well after we each moved.  I met Sarah at a mito mother's son's birthday party.

While I received my diagnosis almost 10 years ago, my sisters were only diagnosed in the past year and a half.  Mitochondrial Disease has many different symptoms and combined we probably have all of them.  Three of us are tube fed and three of us have a PICC/port/Broviac, but only two have both.  Since there is so much overlap, rarely is there a time where I have a symptom or question and they have no idea what I'm talking about.  (This article has some other information about Mito and how it has influenced our relationship.)

Better yet, when I need a new specialist who is familiar with Mito, I have three experts who I can count on for advice.  Since there are few doctors who understand Mito, 90% of my doctors also know one if not two of my mito sisters.  The only doctors I don't share with my sisters are PCP, Pain Management (Baclofen pump), and Neuro (CHOP).  All of the others I see regularly are shared, which can make appointments interesting since sometimes one or two of my sisters may also have an appointment or two close to at the same time as my own.  Random meet-ups can me quite frequent, but most of it is up to chance.  One week about two months ago, one of my sisters had the same number of appointments as I did, including two with the same practitioners, GI and Nutrition, all at the same hospital (MGH), in the same office.  I think I saw her three times, and every time is as good as the last if not better!

Sometimes just one of us is inpatient, sometimes two, rarely three, but about two weeks ago, all us were in the hospital at the same time.  To truly understand how low these chances are, consider this;  in my entire 24 years I've only been inpatient about ten times, three of those were in the past year for elective surgery.  My sisters have had about the same number of admissions, but they've been much more concentrated, occurring within the past year.  Initially, two of us were at MGH and one was at Lowell General Hospital.  I was the only one whose admission was planned, my sisters just wound up inpatient at the same time.  At one time, Chelsea was down the hall from me on a different unit, but I wasn't in any shape to visit her, and she wasn't leaving the ICU.  At that point one of us was still free of the hospital band, but that changed when she was visiting me and received a call from one of our doctors to go to the ER.  From then on, we were all inpatient.  

While I never, ever want to repeat all of us being inpatient at the same time, it was comforting to know three of us were under the same roof together but separated by walls, doors, and floors.  Since my mito is mostly stable, I'm used to being the visitor or sometimes a ping-pong ball going back and forth splitting my time between my sisters who are inpatient.  This time, I really wanted to be with them but couldn't not because I was "too busy" or was inpatient myself, but because I had just had the most painful surgery of my life.  My heart was with them, but my body couldn't be.  It was so hard to know the three people who understand you most and in ways parents and non-mito friends cannot truely comprehend are also struggling in their own ways, yet you cannot be there for them.  I desperately wanted to break out of my room to see them, even if only for 15 minutes, but knew that wouldn't go very well if the simple act of breathing caused intense pain.  After all, most would like a visitor who can breathe. 


The day after my G-tube surgery

Stef (with Beast) at LGH

Chelsea (with True) 


While the subject of this post is by no means positive or good, its core is about something stronger than any disease or illness.  Mito can repeatedly ruin our plans to get together, but it cannot and will not break the bond we share as a result.  Yes, I may be living in PA temporarily, but my heart and soul is in Massachusetts with my sisters Chelsea, Stef and Sarah.

Hope

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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