#ivphosphate

[swimmiey]

Last Friday I came home after yet another 16 days admission. My potassium and phosphate levels were stable so they felt comfortable sending me home waiting for my neurosurgery appointment next week. I'm still in so much pain, extremely nauseous and can't hold anything down (so it's probably just a matter of time I'm getting dehydrated and hypokalemic again and need to be readmitted). My head hurts so so bad it's almost unbearable 😭and I've lost so much weight from not being able to hold anything down. Some days I feel like giving up, I really don't know how much longer I can do this. I almost begged them to do an lumbar puncture, but they refused because of the pulmonary embolisms.. they think it's a to big of a risk to stop the blood thinners to do an LP.. but really something needs to be done because I can't take this pain any longer. I'm so sick and tired of this. I just don't understand why they let me wait for 3 weeks because my own neurosurgeon isn't available and the other ones just don't know anything about IIH and refuses to help. My whole day consist about taking pain meds, taking 3 different anti emetics (2 of them make me sleepy like hell, like all I can do is sleep all day). I really need I sign that it will get better, that it won't be like this forever. All I can hope is that they will take action next week and not saying to wait it out again like they said last time, because this really is taking its toll on my body but also on my mental state. I feel like I'm losing my mind. Even though I'm in so much pain I'm trying to keep up with school and go to clinicals for half shifts, because at home I feel like going crazy. ++++++++++++++++++++++++++++++++++++++++ #chronicillness #chronicpain #invisibleillness #portacath #ivpotassium #ivphosphate #intracranialhypertension #kidneydisease #kidneyproblems #myheadhurts #headachefromhell #totiredtofunction #totiredtosleep #anticoagulant #antiemetics #ineedacure #hospitallife #miracleshappen #believeinhope #dowhatyouthinkyoucantdo #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #shuntlife #shuntproblems #vpshunt #lpshunt #nursingstudent #lumbarpuncture #iihsucks

[swimmiey]

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)

[swimmiey]

Going to school the chronic ill way 😅 because I was admitted to the hospital I wasn't able to go to my class, but because of my lovely classmates I was able to attend my nursing clashing through Skype. Last Monday I had to do blood work and had a phone consult at 5pm with my nephrologist, but only one hour after I came home from the hospital my phone rang. It was my nephrologist to tell me my phosphate and potassium levels were dangerously low again. My phosphate was 0.26 (normal range 0.8-1.4) and my potassium was 2.4 (normal range 3.5-5.0). They both have been lower in the past, but reason enough to be admitted to the nephrology ward. Had both through iv for the first 3 days and after that we watched the levels with my home meds. My phosphate is quite low again (0.5) but for my it's acceptable, my doctor decide that levels from 0.5 and above are okay for me. So I'm home now, but have to do weekly blood draws to check my levels, since I still can't stop throwing up. ---------------------------------------------------- #nursingstudent #nursingschool #proudtobeanurse #skypeschool #chronicillness #chronicillway #invisibleillness #electrolyteimbalance #spoonielife #shuntlife #shuntproblems #iihsucks #lowphosphate #lowpotassium #hypokalemia #hypophosphatemia #portacath #hospitallife #headachefromhell #futurenurse #intracranialhypertension #pseudotumorcerebri #painsomnia #totiredtofunction #ineedanap #ivpotassium #ivphosphate #ineedacure #ifeellikegivingup #ineedaspinaltap (bij Isala Ziekenhuis Zwolle)

[swimmiey]

My nephrologist is truly amazing. So glad he's my doctor. Last Thursday I've had an appointment with my nephrologist. When I first walked in he said: I think you don't really feel that we'll, maybe we should draw some blood before we continue. So he called someone who could access my port to draw some blood. After that was done we talked for almost an hour about many different things, but the main thing we discussed is to do weekly potassium and phosphate infusions at the daycentre/infusion center to prevent symptomatic hypokalemic and low phosphate episodes. We start doing them weekly and if needed we'll do them more. If we know how my body reacts to the potassium and phosphate and know exactly how much I need of it, we will go ahead and do home infusions. He said some of his colleagues are a bit scared of doing so, because normally potassium can only be givin in the hospital, but he said he's doing good anything to prevent those admissions and make life a bit easier for me. I really love this nephrologist and how he's actually seeing me instead of work. He takes his time to actually talk to me and listen to me. He was also a bit frustrated with my neurosurgeon, so he decided to call him, even though he's in a different hospital. Tuesday he's calling me back and then we'll talk about when I'm going to get my first infusions planned. ----------------------------------------------- #chronichope #chronicillness #invisibleillness #kidneydisease #kidneyproblems #fanconisyndrome #hypokalemia #hypophosphatemia #symptomatichypokalemia #portacath #potassiuminfusion #ivpotassium #ivphosphate #weneedacure #weeklyinfusion #hospitallife #homeinfusion #spoonielife #spoonieproblems #spoonie #lowphosphate #lowpotassium #ineedanap #amazingdoctor #nephrology #nephrologist #totiredtofunction #sickandtiredofbeingsickandtired #butyoudontlooksick (bij Isala Ziekenhuis Zwolle)

[swimmiey]

I do miss the old me, were I was able to live a somewhat normal life. Where being in the hospital meant I was at work instead of being inpatient/admitted. Where I didn't spend hours on iv poles just to keep things manageable until the next time my body would give up. Once again I'm admitted, day 8 in the hospital and still no sign of going home. My blood pressure is extremely low, so they're pretty worried about that. I'm on 3 liter infusion with iv phosphate, because those levels are way to low to. Partly because I keep throwing up and for the rest because of my kidney failure. Friday I was transferred by ambulance to my neurosurgeons hospital, but there was an on call neurosurgeon who didn't know anything about IIH and the problems I'm having with my shunt, so they prescribed me dexamethasone and I was send back to the other hospital. My potassium and phosphate levels keep dropping, so that's a problem.. we are just taking it by day to see when I can go home without being rushed back within a few days. I'm so grateful for my amazing nephrologist, who is completely understanding and doesn't do anything before discussing it with me first. He is on call this weekend, so that's great and he said he would step by every day to see what's going on. To be continued... +++++++++++++++++++++++++++++++++++++++ #portacath #ivpotassium #ivphosphate #kidneydisease #intracranialhypertension #iihsucks #headachefromhell #shuntlife #shuntproblems #hypokalemia #hypophosphatemia #hypotension #ambulance #totiredtofunction #ineedanap #ineedacure #invisibleillness #chronicillness #butyoudontlooksick #sickandtiredofbeingsickandtired #myheadhurts #hospitallife #imissmyoldlife #spoonielife #spoonieproblems #spoonie #lowbloodpressure #pseudotumorcerebri #ziekenhuisleven #bravedutchies (bij Isala Ziekenhuis Zwolle)

[swimmiey]

I was allowed to go home yesterday. They needed 4 tries in total to access my port (like you can see in the pic. First 2 times, and a day later my port stopped working and they needed 2 more tries). #hypokalemia #ivpotassium #ivphosphate #portacath #renalfailuresucks #raredisease #hypokalemiasucks #hypophosphatasia #hospitallife