Haven't done a proper update in a while. About a month ago I saw my neurosurgeon, he said there's nothing more he can do anymore. I just have to learn and live with it. Still so sad and angry about it, I really had my hopes up for this neurosurgeon. And A little over 2 weeks ago I've had an outpatient appointment with my nephrologist and was admitted after because my levels weren't what they needed to be. My kidney function had dropped, my phosphate and potassium levels were way to low so I needed telemetry to make sure I wouldn't get any arrhythmias. At first he wanted to try to bring my levels up with giving double dose through my NG tube, but after 4 days me levels only got lower so they decided to start an iv after all. It was in my ankle/foot because they couldn't get a vein anywhere else. A week later my doctor wanted to do an gastric emptying study and upper endoscopy to see if there was a reason for my constant nausea and vomiting, even though I still think it's from the intracranial hypertension, neurosurgeon stated it can't be so they want to dive deeper into it. Didn't have the GES yet, but during the endoscopy they changed my NG for an NJ tube, hoping that will help with the vomiting. Was discharged after another 10 days admission. Have to do blood work again in 2 days, hoping my levels haven't dropped any further, since they already were dropping before I was discharged, but it was still in the safe range so I was allowed to go home. #njtube #tubefeeds #electrolyteimbalance #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #myheadhurts #kidneydisease #kidneyproblems #spoonielife #spoonieproblems #hospitallife #endoscopy #endthestigma #gastricemptyingstudy #hypokalemia #hypophosphatemia #telemetry #ivpotassium #ivphosphate #totiredtofunction #sickandtiredofbeingsickandtired #butyoudontlooksick #chronicpain #chronicfatigue #chronichope #miracleshappen #believeinhope #nephrologyward (bij Isala)
