Building a Case for Potassium

The last ER visit seems so far away, and so near at the same time. I go to the ER a lot more than you would think. I don’t usually tweet or blog about it, but sometimes Master will.

The average amount of times I go to the ER per year over the last two years is every three months. That’s a lot. Last year alone I went five times. All but one of the times I have gone in the past two years have been for low potassium, or a stroke-like migraine (or seizure, we aren’t sure yet) caused (most likely) from low potassium. The other time I went was when my doctor thought I ruptured my bowel and it turned out to be a very large ovarian cyst.

So, none of my trips were avoidable in the least. My doctor has a system for me. When I go to infusion if I am having symptoms I am to ask for a potassium blood test (I have a standing order) and if my potassium is low they will give it to me that day (if they can reach my doctor) or next week (if I’m not dead.)

The problem this presents is that, my potassium drops randomly and without warning. It will be fine at a blood test in the afternoon, and it will be low that night. It is unpredictable and the reason for that is the wild nature of my gastroparesis. Some days I absorb nutrients okay, and some days I don’t.

Many of my electrolytes, vitamins, and other blood work have been consistently falling since my gastroparesis diagnosis, however, they are all either low normal or just barely over the line on average with the exception of potassium which is borderline or low. To give you some perspective, borderline potassium is 3.5, while anything above 5.2 is considered high. My doctor would like to see me at a 4 but even though I drink 1-2 liters of Pedialyte per day (20-40MEQ average) as well as sixty MEQ of prescription powder packets I still rarely get above a 3.6. So naturally, it doesn’t take much for me to dip to unsafe levels and experience the terrifying stroke-like episodes.

My GP’s hands are bound and she will not put potassium into my IVs unless I am below 3.5 at the time of infusion, which isn’t always the case as I’ve explained. There must be a way to go to the Emergency Room less often and my neurologist is working on it. She’s putting me through a bunch of testing and once we know what is happening to me exactly (am I having strokes, seizures, or hemiplegic migraines) she’ll set me up with potassium IVs every week when my potassium is below 4. This would give me a much better chance at staying out of the ER. For potassium, anyway. Fingers crossed my other numbers continue to stay just above the line or even improve.

Why am I telling you all of this? Because people get mad when they hear my potassium fell again.

“DO something about it!”

“Eat more!”

“Take supplements!”

“Get IVs!”

It isn’t always that simple. It doesn’t happen at the snap of your fingers. In the medical field you have to build up a case as to why you need things. Most doctors do not have the power to say “BOOM! Your potassium fell once let’s just let you up with potassium IVs for life.” My numbers fall, but once every two or three months. So, from my doctor’s perspective I do just fine most of the time.

Not me though, and not my neurologist. Certainly not Master. We want a better life with less time in the hospital. I was only grocery shopping when my potassium fell despite feeling great all day. We could have been anywhere beside the hospital and downright happy.

It’s so hard and so frustrating. We see it one way, my busy GP sees it another. At least we have a specialist to back us up. The trouble is? We won’t see her for my EEG and then to discuss all my results until April 8th. It’s a waiting game. April feels like forever, though I know it isn’t.

I was so drugged out on IV drugs yesterday after my last Emergency Room run that I slept the whole day, except for a very brief hour or so where I drank a bit of potassium, had three bites of toast and tried to sit up and play video games. I realized I was crazy to try, left the damn game running and fell asleep like that on the couch until Master came home.

I was of course, awake all night after my seventeen hour slumber. This morning I’m awake from having slept for so long. I’m going to move around a bit, but nothing too crazy. After all, tonight we have to go grocery shopping again. Think I’m crazy? We didn’t finish the other night when I came down with my stroke-like migraine and we still need things. Like goes on whether you feel up to it or not. Besides, the chances of my potassium falling twice in one week are pretty low. ::Fingers crossed::