#lowphosphate

[swimmiey]

So I promised an update for everyone who's interested. I was admitted last Saturday because I couldn't stop vomiting and my headache became even worse than it already was the lest few weeks. I hoped they would just do the lumbar puncture (LP) but had the bad luck the one neurologist that's always refused them was on call.. he didn't want to do it, but wanted to admit me for iv fluids, iv metoclopramide (to reduce the vomiting) and more pain meds. They decided they wanted to do an MRI, so had it on Tuesday. Today I've had an preop appointment in another hospital, and the doctors here wanted me to go. I've finally got a date for my shunt revision! I will be admitted may 1st and will be having surgery may 2nd. To reduce my symptoms for the next few weeks my neurosurgeon called the hospital I'm in now to say it's okay to do an LP and reduce my symptoms for the next week until surgery. So I'll be having an LP on Monday and hopefully I'm allowed to go home after. It's an 10 days admission again.. and I'm kinda tired about it. But I'm so relieved to finally have a date for surgery. I know it might sounds a little bit weird, but I'm actually looking forward to having this surgery. I really hope this never ending headache is finally come to an end after. --------------------------------------------------- #chronicpain #chronicfatigue #chronicillness #invisibleillness #ivfluids #brainsurgerysurvivor #brainsurgery #shuntlife #shuntproblems #shuntrevision #vpshunt #lpshunt #lumbarpuncture #electrolyteimbalance #lowphosphate #lowpotassium #hypokalemia #hypophosphatemia #intracranialhypertension #inrtesting #iihsucks #pseudotumorcerebri #portacath #spoonielife #chronichope #neurosurgeon #ivpotassium #headachefromhell #myheadhurts (bij Isala Ziekenhuis Zwolle)

[swimmiey]

Second try on this update. Was admitted Monday for surgery. Like I was expecting they had trouble getting an iv in. After a few tries there were 5 anesthesiologists around my bed looking with ultrasound for a vein they could put the iv in. After a while they decided to put me under with gas and put a central venous line in my neck/jugular vein when I was asleep. Later they told me they also had trouble putting the line in when is was under, they had to try 4 times. After surgery my CVL had to be removed because it wasn't working anymore, but I still needed iv access for my potassium. One of my favorite nurses from pain management was willing to try and get another iv, and she had after 2 tries. Because of scare tissue they've had some trouble placing the port, so it's kinda bruised and soar now but I'm just happy it's in there and I don't have to worry anymore about blood work or getting. Iv access when I need it. Had to stay over night because of my potassium levels, but that was okay. Still extremely nauseous from high pressure and the general anesthesia. Probably will be having my shunt surgery in 3 or 4 weeks and I'm so relieved I want have the same trouble with getting an iv in then. ************************************************* #generalanesthesia #anesthesiologist #operatie #operatingroom #portacath #portacathsurgery #centralvenousline #jugularline #ivpotassium #lowphosphate #lowpotassium #electrolyteimbalance #hospitallife #ziekenhuisleven #chronicillness #invisibleillness #intracranialhypertension #butyoudontlooksick #sickandtiredofbeingsickandtired #painmanagement #childhoodcancersurvivor #spoonielife #spoonieproblems #ineedanap #bravedutchies #brainsurgery #shuntlife #shuntproblems (bij Isala Ziekenhuis Zwolle)

[craftygal65]

RepostBy @two_bags_and_a_kidney: "Look after your kidneys!! #worldkidneyday2018 #kidneys #dialysis #pd #peritonealdialysis #renaldiet #lowphosphate #lowphosphorus #lowpotassium #kidneydisease #ckd #chronicillness #stupidkidneys #renal #kidneysawareness #lifeondialysis" (via #InstaRepost @AppsKottage)

[swimmiey]

Today is world kidney day, to globally raise awareness for chronic kidney disease. Chronic kidney disease (CKD) is a worldwide public health problem with adverse outcomes of kidney failure and premature death. CKD affects approximately 195 million women worldwide and it is currently the 8th leading cause of death in women, with close to 600,000 deaths each year. I’m one of those 195 million, I was treated for kidney cancer many years ago but because of it I developed Fanconi syndrome. Fanconi syndrome is a rare disorder of kidney tubule function that results in excess amounts of glucose, bicarbonate, phosphates (phosphorus salts), uric acid, potassium, and certain amino acids being excreted in the urine. For me the biggest problem is getting my phosphate and potassium levels at normal levels. I’ve had over 30 hospitalizations the last 3 years because my levels were dangerously low. WorldKidneyDay aims to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide. #worldkidneyday #worldkidneyday2018 #chronicillness #invisibleillness #fanconisyndrome #kidneydisease #kidneyproblems #electrolyteimbalance #hypokalemia #weneedacure #awareness #imawarethatimrare #lowphosphate #hypophosphatemia #acidosis #tubulardysfunctions #kidneyfailuresucks #spoonielife #totiredtofunction #watchyourkidneys

[swimmiey]

Today is the last day of February, which means it's rare disease day. A disease is called rare when less than 5 in 10.000 people are diagnosed with it, and it has to be life treating or chronic. In my case it means I have multiple rare diseases. The first one was a rhabdoïd tumor in my right kidney, about 1 in 12.000.000. After that I've got a sinus thrombosis and a vestibular schwannoma, both about 1 in 100.000. Becasue of this is developed idiopathic intracranial hypertension, also 1 in 100.000. A DVT in my arm, not very common (don't know the exact number). Also I have renal tubular acidosis and fanconi syndrome, causing severe electrolyte imbalance. Although isolated proximal (type 2) or distal (type 1) tubular pathologies are well characterized, a combined pathology leading to type 3 RTA is extremely rare. There needs to be more awareness for rare diseases and the complications they can cause. ------------------------------- #imawarethatimrare #raredisease #rarediseaseday2018 #icareaboutrare #intracranialhypertension #sinusthrombosis #vestibularschwannoma #rhabdoid #rhabdoidtumor #armthrombosis #pseudotumorcerebri #fanconisyndrome #butyoudontlooksick #rarediseaseawareness #rta #renaltubularacidosis #renaltubulardysfunction #electrolyteimbalance #hypokalemia #hypophosphatasia #lowpotassium #lowpotassiumlevels #lowphosphorus #lowphosphate #chronicillness #invisibleillness #spoonieproblems #weneedacure #totiredtofunction #chronichope

[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]

Yesterday I went to my nephews 3th birthday and later that day to my niece who turned 6 last Thursday and her brother and sister. It was fun (and if you swipe my little nephew loved his towel I gave him for his birthday). I was wiped out, so I decided to lay and rest on the trampoline for a bit when my other nephew decided he would join me. Took this picture before he did, but in the next picture he told me he wanted to be in the picture to to say cheese 😂. I really like this picture, not only because I wore makeup for the first time in forever. I know I look a lot better and healthier than I felt at that moment, but maybe that's part of the reason why I like it so much. It made me feel like the old me when looking at it. Going to sleep now, because my head is killing me even more after yesterday, but is was nice to be out of the house again, even though my body doesn't like me for it. By blood pressure is extremely low again as you can see in the last pic, no wonder why I was so dizzy today and last night. I really hope I'll hear back from my neurosurgeon this week tho discuss what the treatment plan will be. Also next Monday I have an appointment with my nephrologist, so fingers crossed my potassium and phosphate levels aren't dangerously low again, because I can feel they are to low at the moment, just hope it's high enough to manage at home. ---------------------------------------------------------- #chronicillness #invisibleillness #butyoudontlooksick #portacath #lovethislittleguy #intracranialhypertension #chronicpain #hopeforacure #spoonielife #shuntlife #shuntproblems #electrolyteimbalance #kidneydisease #lowphosphate #lowpotassium #hypokalemia #vpshunt #lpshunt #totiredtofunction #headachefromhell #pseudotumorcerebri #ineedanap #ineedaspinaltap #hypotension #lowbloodpressure #Tachycardia #iihsucks #sickandtiredofbeingsickandtired #spoonie

[swimmiey]

Was admitted last Sunday, my heart was racing, it didn't go below 140 bpm so I called the GP and he send me to the ER. They (and I) think my intracranial pressure is to high again, so they want to do a lumbar puncture. But because I'm on blood thinners they have to wait until they've worn of. I'm so tired of this sh*t show. When I was in the ER 3 nurses recognized me, and the number is just coming up. So many people recognize me it's just crazy. And because of this I missed my presentation and if I'm not back home soon I'll also can't go on vacation. I fucking hate IIH ------------------------------------------ #exhausted #headachefromhell #hospitallife #invisibleillness #intracranialhypertension #icantdothisanymore #bloodthinners #blurredvision #chronicillness #chronicpain #chronicfatigue #sickandtiredofbeingsickandtired #butyoudontlooksick #endthestigma #lumbarpuncture #insomnia #painsomnia #pseudotumorcerebri #neurologist #bravedutchies #emergencyroom #iihsucks #iihawareness #spoonieproblems #spoonielife #killerheadache #lowphosphate #lowpotassium #lifeofaspoonie #lowonspoons (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]

Every single day is a fight and I'm so tired of fighting. I just want to be normal and work again, finish nursing school and be able to do the things I love. I can't handle this never ending pain anymore, and after my bilateral pulmonary embolisms I have even more pain than I already had. Every breath I take is hurting me and the headaches are getting worse. I feel like my pressure is so high again.. but have to wait until June 20 until they do another pressure reading. On the positive note: I've had an amazing weekend at camp. I volunteered at a children's camp for children who are fighting cancer and I loved doing it. It feels so good to entertain those kids and make them forget about everything for awhile and just have fun and be crazy. Didn't get much sleep, so I'm exhausted.. But it was some much needed positive energy after my PE and drain revision that doesn't seem to help yet. ------------------------------- #chronicillness #invisibleillness #shortofbreath #pulmonaryembolism #ithurtssobad #ithurtstobreathe #spoonielife #chronichope #chronicheadache #chronicfatigue #chronicpain #childhoodcancersurvivor #childhoodcancer #painsomnia #paingoaway #intracranialhypertension #intracranialpressure #pseudotumorcerebri #portacath #spoonie #shuntproblems #shuntrevision #shuntlife #cancercamp #childhoodcancerawareness #lowphosphate #lowpotassium #hypokalemiasucks #kidneyproblems #kidneyfailure

[swimmiey]

When you think you look cute with a snap chat filter 😂😂 starting to get a bit nervous for my surgery Monday. In 32 hours I will be admitted to the hospital (have to be there at 7.30 am). Even though I'm starting to get nervous, I'm not nervous for the surgery at all. I'm most nervous for getting the iv, because last time it took them over 4 hours, 20+ pokes and 4 anesthesiologists before they finally were able to start an iv. I know it's stupid to be more nervous for starting the iv rather than the surgery itself. But this will be my 16th surgery so I know what I can expect. If everything goes well and my electrolytes behave I'll be home Monday evening. I just hope that this time they won't refuse giving iv potassium during the surgery. Last 3 times they refused, said it wasn't necessary, but my levels dropped like crazy after surgery.. Last time they did give some iv potassium and my levels stayed within range. So I'm hoping I have a nice anesthesiologist Monday that's willing to listen to me, because I know my body and what's best. I know I will have Hypokalemia after surgery and feel like 💩 when they won't give it. I'll update Monday after surgery. Hope you all have a nice weekend. ************************************************* #hypokalemia #spoonieproblems #surgery #portacath #portacathsurgery #nervousaf #chronicillness #invisibleillness #intracranialhypertension #electrolyteimbalance #lowphosphate #lowpotassium #spooniestrong #totiredtofunction #headachefromhell #ineedaspinaltap #irregularheartbeat #generalanesthesia #shuntlife #shuntproblems #childhoodcancersurvivor #anesthesiologist #hospitallife #operatie #ziekenhuis #ziekenhuisleven #operatingroom #gripperneedle

[swimmiey]

It really doesn't matter, once I'm in the hospital I'm a nurse and no longer a patient. It feels so good to take care of those little ones instead of the one that's taking care of. I know I'm still a patient and I know I'm not miraculously healthy, but I really love being a nurse. It always was and still is my dream job. ----------------------------- Medical update: today I've got a call from my nephrologist. He contact some his colleagues (also the one who said last time it wasn't necessary anymore). He said he had some trouble reaching some of them and he just hung up the phone before he called me. He said you can jump high or low (it's a Dutch saying meaning "whether you like it or not") but you are needing a new port. So he is asking the vascular surgeon to put a port a cath back in, rather sooner than later. He said he thinks they need to hurry and do the surgery soon. I'm actually pretty happy about this, even though it means yet another surgery, becasue they need over 15 pokes for just 3 tubes of blood and over 3 hours, 6 anesthesiologist and 14 tries before the got an iv in. He thinks it's just to dangerous to not have access when needed. So I really hope I'll have a date soon. Haven't heard back from the neurosurgeon,so no date for shunt revision either. ----------------------------- #chronicillness #invisibleillness #intracranialhypertension #chronicillnurse #chronicfatigue #chronicpain #totiredtofunction #iihsucks #ineedanap #portacath #surgery #brainsurgery #spoonielife #shuntlife #nursingstudent #futurenurse #pseudotumorcerebri #bravedutchies #butyoudontlooksick #electrolyteimbalance #shuntlife #shuntproblems #shuntrevision #vpshunt #lpshunt #lowphosphate #lowpotassium #sickandtiredofbeingsickandtired #spoonie #sinusthrombosis

[swimmiey]

Having a hard time. Still recovering from my port surgery and at the same time my head feels like it's going to explode. My last lumbar puncture is almost 7 weeks ago and I don't think I can hold it of any longer. I hoped surgery to revise my shunt would be planned before I couldn't handle the pressure and pain anymore, but surgery won't be for another 2-3 weeks. April 20 I have an Appointment with neurosurgery resident to discuss the admission and surgery and I have an pre op assessment with anesthesiology.. I've been throwing up a lot lately (so scare my potassium and phosphate levels will drop anytime soon), I have right side weakness, vision loss, pulsatile tinnitus and an extreme pressure headache. I'm just so tired of this pain. I'm not being able to sleep well because of the pain, but not sleeping makes the pain so much worse. Ugh just make it stop please. ************************************************* #invisibleillness #chronicillness #chronicpain #chronicfatigue #painsomnia #painmanagement #neurosurgeon #nauseous #sickandtiredofbeingsickandtired #butyoudontlooksick #brainsurgerysurvivor #portaccess #portacath #pseudotumorcerebri #ineedanap #ineedacure #intracranialhypertension #lowphosphate #lowpotassium #electrolyteimbalance #hospitallife #portacath #portacathsurgery #spoonielife #spoonieproblems #spoonie #shuntproblems #shuntlife #shuntrevision #iihsucks

[swimmiey]

So I've got a call from the hospital that I will be having surgery next Monday to place my port back again. Last week when I've had my first appointment with my vascular surgeon they said it would probably be 14 weeks until they could do the surgery, but yesterday I've got a call it will be within the next week so I'm really happy about that. I'm not happy because it's another surgery but I'm happy because I don't have to worry anymore about getting blood work done or placing an IV when I really need it because it's getting harder and harder and last time they just couldn't get an IV in and they couldn't get the blood work done. Which can be dangerous when my potassium or phosphate levels suddenly drop, because if they do I really do need quickly IV access, because I can get paralyzes or muscle weakness but also my heart can stop beating if those levels are too low. So yeah, the things you can get excited about as a spoonie. Also my neurosurgeons office emailed me back, they've had a chance to talk to my neurosurgeon and the emailed me that my shunt revision will probably be in the second or third week of April. I just hope I will be able to go to a concert of Matt Simons I already have tickets for. Also im going to call my neurologist tomorrow to see if it's possible to schedule a lumbar puncture the Monday I will be having surgery, so it will be a bit easier to make it until shunt revision surgery. ************************************************* #surgery #spoonielife #shuntlife #chronicpain #chronicfatigue #bravedutchies #electrolyteimbalance #lumbarpuncture #shuntlife #shuntproblems #portacath #portacathsurgery #venousaccessport #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #lowphosphate #lowpotassium #vascularsurgeon #thingsigetexcitedabout #chronichope #headachefromhell #hospitallife #spoonieproblems #spooniestrong #lifeofaspoonie #hypokalemia #lowpotassium #childhoodcancersurvivor

[swimmiey]

Having a really crappy day, I'm so over it. Today was a concatenation of bad news and I'm so so tired. Just really sick and tired of it all. Tired of being sick, of being in pain every single day.. I was so happy when I found out there was a reason I wasn't feeling well, that we found the reason for my intracranial pressure being to high despite having 2 shunts and I was so happy I would get my port back. And I'm still happy I will get my port back, and that I've found a neurosurgeon who wants to help me and try a different shunt, but I today I've heard it will take a lot longer than anticipated. My port surgery had a waiting list of 14 weeks and my neurosurgeon is out of office for an undefined period.. So my shunt revision probably will take another month or probably even longer, and I just can't handle this high pressure anymore. And today I've got a call from the pharmacy that my potassium chloride tablets aren't covered by insurance anymore, and I can't afford the copay they ask now.. But without them I'll be admitted in no time because my potassium levels will drop. Waiting for my nephrologist to call back and discuss what's next. ************************************************* #chronicillness #invisibleillness #intracranialhypertension #icantdothisanymore #incurabledisease #insomnia #imsotired #painsomnia #pseudotumorcerebri #electrolyteimbalance #lowphosphate #lowpotassium #kidneydisease #shuntlife #shuntproblems #shuntrevision #iwanttosleep #iihsucks #howmuchmorecanitake #sinusthrombosis #sickandtiredofbeingsickandtired #butyoudontlooksick #brainsurgerysurvivor #headachefromhell #myheadhurts #bravedutchies #chronicfatigue #chronicpain #portacath #spoonieproblems