Monday, March 26, 2012

Yeah, You Buckle with the Weight of the Words

At this point in my life, I should be able to recognize that my own manic behavior is a sign something is going to happen... but, no. That is a lesson I have not yet learned.

I certainly hope I learn it soon.

Yes, it has been awhile. No, it wasn't intentional. But I'm tongue-tied and twisted. I feel it needs to be said, but I don't know how to say it.

After I stayed up late, manically trying to write my last post, I went to bed. Two hours later I was up, Aaron called 911 and the medics who came to our home thought I was having a heart attack.

Nothing says welcome to thirty-five like medics telling you are you having a heart attack (even if you don't believe them).

Five days later I was discharged from the hospital with a diagnosis of an acute pancreatitis with elevated liver enzymes. No explanations why this happened - in fact, every reason why this could have happened was ruled out for me: I don't drink (especially since having my gallbladder removed), I don't smoke; my cholesterol and triglycerides were on the low-end of normal. The hospital did every scan possible to try and find a rogue gallstone blocking something - nothing (but I was told that I "won the award" for holding my breath the longest and best in the CAT scan). I was discharged to "resume my normal life" and "cross your fingers it doesn't happen again."

Two days later I was at urgent care with a fever a chills, more tests ran. I was put on a liquid diet.

Three nights later I experienced another "attack" but since I knew what it was, I took a pain pill and went to the doctor the next morning. More tests were ran.

The next day I was told to "urgently" see the GI that was over my care while I was in the hospital. I got an appointment to see her the next day.

She looked at my hospital tests and all the test ran since my discharged. She had an idea of what was wrong: I had sphincter of oddi dysfunction.

We had never heard of it. Only two doctors in Kansas City work with patients with this, and the wait lists are months long. And more tests have to be ran to rule out other diagnoses.

To get from there to here was a long road. Many test. Many ER visits. Nineteen days of a liquid diet followed by 25 days of a clear liquid diet. Threats of hospital admission or an in-home health aid to administer IV bags. Thanks to friends on Twitter and Facebook, my wait was cut shorter to get in to the specialist, but over 40 days of being on an exclusive liquid diet messes with your brain, with your organs. Yes, I lost 40 pounds in less than a month. No, I would not recommend it.

The sphincter of oddi is a tiny, one millimeter in diameter sphincter and muscle. When you eat, the food travels from your stomach to the digestive tract. The sphincter of oddi opens and allows the digestive enzymes from your liver and pancreas (and gallbladder, if you still have yours) to travel to your digestive tract and the enzymes help digest your food.

For a person with sphincter of oddi dysfunction, the sphincter does not open. Instead, it closes tightly and spasms which signals to the liver, pancreas, and gallbladder to release the enzymes - typcially into other organs and your blood stream.

When we finally got to my surgery day, they were unable to complete everything that needs to be done (which likely means more surgeries - yes, plural - this year); when they did a pressurized test of my sphincter of oddi, they said they would cut it open if it registered a pressure over 40.

Mine registered a pressure of 170.

The surgeon told my husband, "No wonder she couldn't eat."


So, no I'm not 100%. And that's ok. I'm slowly getting there. I can eat breakfast. And a decent lunch. And sometimes a snack. But no, my pancreas and liver are "still mad" and we're still figuring things out.

Aaron took four weeks off of work using FMLA leave to take care of me and run the household. This will be able to cover any additional hospital visits (goodness, I hope not) and potential surgeries for the rest of the year.

Life doesn't stop, even when it feels like you are 20 feet under water and struggling to survive.

Griffin turned ten...

Darwin continues to be Darwin...

Emerson continues to grow and has hit full-fledged "toddlermonster"...

I swear, that's the stink-eye of a teenager right there.

And spring has come to Kansas...

... even if it means I'm tempted to get a chain saw and destroy every last blooming oak tree in the city.

I've missed this space. As much as I don't want it to medical diary, it is what it is.

And it will be what it will be.

I'm hoping to find the happiness along the way.