Tuesday, September 11, 2012

Mito Crash or Mito Setback?

Last week I let you all know about the fundraiser my husband and I held at our home and the mito crash that ensued because of it.  I also explained that it seemed as though that mito crash was different than the rest.  At the time of my post I had been sick for 5 days when my normal mito crashes only last 2-4 days at the most.  Well, it ended up lasting MUCH longer.  On day 11 I finally got in to see my doctors.  I saw my primary care doctor in the morning, had labs drawn, then saw my GI doctor.  My primary doc wanted to try to increase my nausea meds and send me home to see how I did.  He was checking labs to make sure I wasn't becoming malnourished and/or dehydrated.  After having my labs drawn I went straight to my GI's office.  After explaining to him how the last week and a half had gone, he immediately said that he wanted to put me in the hospital.  He evidently recognized that I was already too weak to wait a few more days to see how an increased dose of nausea meds would help.  So I went straight from his office to the hospital to be admitted.

I was started on IV fluids with Dextrose and Potassium.  They did some lab work again the next day as well as a xray of my abdomen and chest.  They primarily wanted to see how much stool was in my bowels still.  Three weeks prior, however, I was in my GI's office because my abdomen was extremely distended and uncomfortable.  It was not because of small bowel bacterial overgrowth.  It was because I was full of stool.  The week before the party and before I got so sick I emptied out most of that stool.  When I got really sick after the party, I had already gotten rid of a lot of the excess stool, evident by my abdomen that was no longer extremely distended.  Therefore, I knew that my sudden inability to eat or drink was not from being "backed up".  I was feeling good each and every day up until the day after the party.  So it was very evident that my increased activity caused my drastic and sudden decrease in GI dysmotility, not an overload of stool.

My two doctors, however, concentrated on getting my bowels to move for the first 36 hours.  Once I had a bowel movement, my doctors thought I would be magically cured.  Here's a shocker... I wasn't!  My nausea had gotten a lot better after 24 hours of IV fluids.  That was also the same time that I was able to decrease the amount of stool in my abdomen.  In other words... I took a shit.  (Hey, it happens.  Plus, I've told you all before that I'm not shy, not even when talking about poop.  We all do it.)   So now the docs think that my nausea's better because I had a bowel movement but I'm pretty sure it was better because I had 3 Liters worth of IV fluids with Dextrose in my system by that time.

I ended up staying in the hospital for 4 days and 3 nights.  The entire time I was there I was receiving the IV fluids.   I was still only eating up to 10 bites at the most at each meal.  However, I had not vomited since I was admitted and my nausea was better in between meals.  My GI doc changed a couple of my meds and sent me home.

I have been home for 3 days.  I am still not eating much but I've been able to drink quite a bit more than I could prior to being in the hospital.  I will start daily fluids tomorrow.  It took a few days to get the doctor to order them from the infusion company.  Nothing's fast in the medical world.

I am also going to be talking to a dietitian/nutritionist at Thrive Rx, the company that provides my fluids.  They have quite a few patients with Mitochondrial Disease because the mito specialist I see in Atlanta uses this company.  I had a very interesting conversation with them as well as my facebook friends who have mito.  It seems as though many/most people with mito have completely normal labs even when they're very sick with nausea and vomiting causing dehydration.  They also, like me, do not lose weight even after multiple weeks of eating less than 500 calories per day.  Even with zero activity and laying in bed all day, someone should still lose a lot of weight taking in that few amount of calories per day.

My primary care doctor has concentrated on what he sees on paper and, therefore, doesn't realize how sick I am.  I'm hoping that talking to the nutritionist at Thrive Rx and having her talk to Dr. Kendall, my mito specialist, will help.  The two of them can talk to my primary care physician to explain that the worst thing for someone with Mitochondrial Disease to do is fast.

When I went into the hospital last week I was so weak I could barely stand on my own.  My husband was having to help me with everything.  I regained quite a bit of strength while in the hospital.  I left the house today for the first time since coming home from the hospital.  All I did was run a quick errand with my husband.  It made me sick.  By the time I got home, I was very weak and nauseous.

So it seems as though I'm going to have to be very careful for awhile.  As you can tell by now, this was not a normal mito crash.  This was a mito setback, or a mito progression.  I may be heading down the G/J tube road soon, but that's a completely different story for a completely different post for a completely different time.


Only 4 days until the Energy for Life Walk!!!!!  Please help us raise money for a cure!!!
To join my team, click here, then click "Join Our Team".
To donate, click here, then click "Donate".

See you there!!!!!!!!!!!


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