Wednesday, March 23, 2016

Quick Health Update

My last update was basically a post to tell you that I had no news yet. We've started getting some of the results of the recent testing, so I figured now was a good time for an update again.

First, the results of Sebastian (the 2-week heart monitor). We are very thankful that the 2-week monitor showed that everything was pretty much normal! There were a few premature beats and some sinus arrythmias, but apparently that is considered normal in young people (I'm normal?!?!) so my doctor is not concerned. We do not have to discuss changing any medications (praise God!) and more importantly, I do not need to see another heart specialist for any further testing, at least at this point. This was a big weight off knowing that we can at least cross something off the list of possible issues. As I'm mentioned before, while mast cell disease is systemic and can impact every body system, that doesn't mean it can't cause other disease-like processes in various regions of the body. We are very thankful that it appears that my heart is healthy and this is one system that we can check off as having ruled out any other underlying pathology. HUGE praise, so thank you for your prayers!

The next update is regarding the endocrine testing I had done a week or so ago and my appointment yesterday with my endocrinologist. The results of the cortisol stimulation test are in and, while my body apparently is not a fan of the test, my response to the stimulation was good. However, my baseline cortisol was low. My doctor thinks there may be some slight adrenal insufficiency, but it's hard to know if it is just mast cell involvement presenting that way or actual adrenal issues. For the time being, we are not treating this. Treatment for adrenal issues is something that cannot be stopped once it is started, ever. Basically, I'd be on it the rest of my life. Until we know for sure that it is actually an adrenal issue that will not reverse rather than mast cell involvement, we are going to hold off treating. Yay for a doctor who doesn't just immediately push treatment!

The next thing we discussed at length was my blood sugar. I've mentioned that I've been dealing with fairly low sugars pretty often. It was baffling us why this was happening when I've been on continuous tube feedings. Then about 2 weeks ago I started noticing a few high weird/random times. They would go up when I hadn't eaten, I would eat and they would go down. I'd wake up high after not eating or running feeds since 6:30 the night before one day and the next I'd wake up low. The conclusion my doctor came to at my appointment: my body is weird and no one really understands it.

Only partly joking...

Unfortunately, the reality is that we don't really understand my body. My endocrinologist thinks that what is going on is that I'm dealing with what they call "pancreatic burnout." She said it is common for anyone on continuous tube feedings for any length of time, and my mast cell disease is probably just complicating things. When I started the tube feeds, I started getting nutrition constantly for hours at a time. That causes my pancreas to respond the way it would during/after a normal meal. Except since my "meals" don't stop, neither does my pancreas. There is something of a "honeymoon" period where my body was able to compensate and keep up with my tube feeds, but after 9-10 months, the pancreas just gets burnt out. The erratic blood sugars are likely a result of the pancreas getting behind, then overcompensating, then falling back again, and I get this yo-yo of highs and lows.

The good news is that the pancreas can recover from this burnout. The not-as-good news is that this probably won't happen until Herman is removed. While that is something we hope for down the road, I'm not there yet. In the meantime, we will be trying some medications that help stabilize blood sugars to see if we can keep things from bouncing back and forth as drastically. We will need to regularly keep an eye on my sugars because my A1C (measure of long term blood sugar control) is pretty low. That indicates that over the past few months, my sugars are hanging out kind of low. Low sugars are a bit more dangerous in and of themselves than high sugars, so we are hoping that this medication will help get my sugars a bit more than they have been recently.

Last health update is about the Xolair. I am officially eligible for the next set of injections as of this week. We are working on scheduling those soon. I would say that the effects do seem to have worn off some, although, I am still better than I was before we started the injections. Hopefully this next round will continue the improvement and the side effects will be less!

So that's what's up recently. Never a dull moment in Bokatopia! Ups, downs, and everything in between. In other news, our ER counter has officially been reset as of last Sunday. Over 2 months without a date night, I think that is a new record! Everything is okay, so here's to another couple of months OUT of hospitals!

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