Sometimes I know what I'm talking about...not always...but sometimes. I'll admit I'm not a medical doctor and I don't know everything there is to know about POTS/NCS or gastroparesis or MCAS, but I do know myself...too bad actual doctor's don't really seem to care about that part of medical treatment. (and if we really want to get specific, I probably DO know more than most doctors...)
Anyway, I was FINALLY able to get some IV fluids yesterday!!!!! It's been a very rough past few months, and the last couple of weeks especially I was fighting a losing battle with my gastroparesis. It's a vicious cycle - something will cause some of my symptoms to flare up which then results in a ripple effect and causes other symptoms. Sometimes it's not too bad and I'm able to keep myself from starting that downward spiral of doom by slowing down and taking a few days really easy. Every now and again, though (it seems like 1-2 times a year) I have massive flare-ups where I can't seem to get control of my symptoms.
That is what I hopefully am leaving behind as of yesterday morning/afternoon! I had gotten some lab work done on Tuesday, and my doctor called me Wednesday morning concerned about my hydration status and some of the results of the urine tests. I had already gotten to the point where I was deciding that I was going to need to get some IV fluids even if it meant going to the ER...then when I got her call, it kind of sealed the deal. I still have a 24-hr urine test to complete (yay for carrying around a jug of pee!) but my doctor thought it was more important to get me out of crisis mode rather than wait for anther 24 hours.
I figured I would try just going to the health center on campus to get an IV before heading to the ER. It's WAY cheaper than a hospital, (read free because they completely bill insurance!!) and I had gotten some fluids there in the fall after I passed out at school, so I was at least on file. It turned out to be frustratingly more difficult than it needed to be...long story SUPER short:
-front desk said no
-I said let me talk to the doctor
-nurses said we don't usually do that so let's wait and see
-doctor comes in and looks at my chart and says it's already on file that I can receive fluids on an as needed basis if I come in...
Why could they ALL have looked at my chart and seen that???? It could have saved all of us about an hour of our time going in circles. Isn't that the point of having charts? So multiple people in a practice can communicate? Apparently not...must just be to give the staff another task to do...
The doctor that I finally saw was actually pretty good as doctors go. He listened to me, asked questions about GP and POTS/NCS, didn't act like he knew what was best for me but offered suggestions and asked what I thought would work and that I needed. He even asked if I wanted chilled fluids or room temperature and how quickly I wanted them!
So I finally got my IV! It only took about 2 hours of going in circles, but I got a liter of saline over the course of about an hour. I was exhausted the rest of the day, (no idea why getting an IV is so draining, but it is) but felt pretty good. Last night was the first time in I don't even know how long I was able to eat a "normal" sized meal without major issues. Still had some minor complaints, but such a HUGE improvement. Praise God!!
On top of getting the fluids which jumps starts my system, I'm also starting a new medication today - Gastrocrom. It's a mast cell stabilizer specific to the GI tract. I'm excited to see how it works and hope that it can help to calm things down even more!!