Thursday, January 12, 2017

January Whirlwind

January...time for resolutions and starting off the new year right...I'm not sure my mast cells got the message...

In the first 10 days of 2017, I have not just hit my deductible for the year, but also my out-of-pocket maximum. Yay?!?! Thanks mast cells...thanks...

To be fair, the ER trip on New Year's Day was NOT my mast cells fault. It was because Herman IV has been causing issues for the entire 3 weeks he had been in. Although if we're REALLY getting down to the nitty gritty, I wouldn't even have Herman if it weren't for my mast cells, so I guess my mast cells can't get out of this one either.

A few days later, I had the wonderful first time experience of calling 911 for myself when I went into anaphylaxis while I was home alone. While I do appreciate my mast cells helping me experience new things...no, no I do not appreciate it...no more new experiences, at least of the mast cell variety...I am experienced out when it comes to my mast cells...On the bright side, I only needed 1 EpiPen this time, and most of the EMS squad knows me by now so they know what to do. Small blessings, right?

Then just 2 days later Nick and I took what we thought would be a relatively straight forward date night for some fluids and IV meds...Instead, I got admitted due to extremely low potassium...and that's where things have been this past week.


Thankfully after 6 days and A LOT of IV potassium, my potassium was back within the normal range. I've also got IV meds around the clock to manage my mast cell symptoms which also helped me feel better as I'm not absorbing my oral meds well at home. Unfortunately, when we were in the ER, guess who decided to clog yet again? Since I was conveniently already being admitted, GI was called to see if we could figure out what has been going on. I had a CT scan over the weekend that didn't give too much info, so I had a gastrograph on Tuesday. That also didn't give us any useful information, so for now, the Herman issue is still up in the air.


THEN, (oh yes, don't stop reading now, the plot is thickening) we found out the some cultures that were collected had started growing gram+ bacteria. So I appeared to have an infection even though I was asymptomatic...for an infection at least, I still had all the wonderful mast cell symptoms to enjoy. Thankfully, the doctor was willing to wait to start any antibiotics until we knew exactly what was growing since I have such bad reactions to medications. That ended up being a huge blessing because the next day, it turned out that the cultures were contaminated and I didn't actually have an infection. So glad we didn't just start antibiotics immediately! Again, small blessings =)


By Wednesday, we had gotten most of the issues I had been admitted for under control so we started talking discharge. Then my morning blood work came back showing low potassium...again...how many times does that make it?? Way too many...so I ended up getting another 2 rounds of IV potassium. Plus my blood sugars started crashing...even after a few cartons of apple juice, my sugar still wouldn't come up, so I ended up needing IV dextrose. My sugar crashed again in the evening while we were waiting for the GI doctor to come around, and 4 cartons of apple juice wouldn't make it budge, so more IV dextrose it was.


The GI doctor finally came by around 8 pm. Unfortunately the reality is that there are no easy answers right now. Because my GI symptoms are mast cell related and not a primary GI disorder, there isn't much this doctor felt that he could do to help. The problem is that right now, because I'm not absorbing my meds, we're not actually able to tell if any of the new treatments we're trying for my mast cell disease are working since a lot of my meds and passing through undigested. I'm stuck in between GI not knowing what to do and my allergist offering suggestions that only work if they get absorbed...it's a vicious circle and we're not entirely sure what the answer is.

He did suggest a few options from a GI perspective to maybe deal with some of the ongoing tube problems I've been having, so we have some things to think about going forward. He also gave me a prescription for some medications that may help with some of the absorption issues so that could be good if it works. Thankfully, even though it was after 9 pm by the time he left my room, I was still able to be discharged! I am so glad to be home and hope to stay here for a good while!


In other news, my Xolair was reapproved for 2017!!! We are so thankful that not only was it reapproved, but that it happened in time for me to hopefully not miss a dose. Although when I was on the phone talking with the insurance rep about co-insurance until I've hit my deductible and out-of-pocket maximum, he looked at all the claims and then said it shouldn't be an issue. I guess if I'm going to have to meet all the insurance maximums, doing it within the first week of the year makes the rest of the year smooth sailing...small blessings, remember??

I have an appointment with my allergist on Monday and will also be getting my first official Xolair for 2017. I also have appointments with my functional medicine doctor and neurologist coming up before the end of the month. In February I am scheduled to see a new GI doctor since the doctor who changed my tube in December left a week later to run the GI department at the Cleveland Clinic campus in Abu Daubi...yes, you read that right...I couldn't make this up if I tried! Never a dull moment in Bokatopia!

Welcome to 2017...

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