#bravedutchies

[swimmiey]

So yesterday I've had an appointment with the neurosurgeons physician assistent. I went there to get a shunt tap done and to try and lower the pressure in my head. Unfortunately she didn't get any liquor out, my shunt seems to pull vacuum. She could get some out, but as soon as she released the pressure on the syringe it got pulled back into my shunt. So not what I've hoped for. She adjusted my valve to a lower setting, hoping that will help with the vomiting and never ending headaches. Also she talked to my neurosurgeon and he wanted to do an MRI of my head again, since the last one was a while back. I'm on the emergency list because they don't want to wait with the mri for 6 weeks or more. If this doesn't help I'll probably face another brain surgery to check the shunt, place a new sensor reservoir since the one I have broke after only 8 weeks and maybe put back my lp shunt.. I'll keep you posted. -------------------------------------------- #shuntlife #shuntproblems #shunttap #vpshunt #lpshunt #neurosurgeon #ineedanap #chronicillness #chronicpain #invisibleillness #intracranialhypertension #pseudotumorcerebri #sinusthrombosis #sickandtiredofbeingsickandtired #totiredtofunction #spoonielife #spoonieproblems #spoonie #butyoudontlooksick #bravedutchies #brainsurgerysurvivor #brainsurgery #iihsucks #myheadhurts #headachefromhell #chronichope #iwanttolivenotjustsurvive #awarenessmonth (bij Radboudumc)

[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]

Having a hard day today. My headache is getting worse, I've been throwing up non stop the last 4 hours 🤢and my vision is getting more blurry. This LP (and surgery) can't come soon enough. I'm so over it. All I want is to cry 😭 and sleep 😴 but both are making this pressure headache 🤕 worse. I just can't do it anymore, can't handle this pain today. Please pain just go away and come again another day (or never again if that was only possible). Just don't be here today, because I'm still in so much pain from yesterday. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ #chronicpain #dailyheadaches #ivfluids #chronicillness #invisibleillness #chronicfatigue #intracranialhypertension #pseudotumorcerebri #butyoudontlooksick #lumbarpuncture #headachefromhell #headache #hospitallife #ziekenhuisleven #portacath #bravedutchies #brainsurgery #painsomnia #paingoawayplease #myheadhurts #ineedanap #totiredtofunction #sickandtiredofbeingsickandtired #sickbutstrong #sinusthrombosis #spoonielife #shuntlife #shuntproblems #shuntrevision #iihsucks (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)

[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]

So yesterday I said I've got some good news. My mom texted me saying there was a letter from the hospital (the one I want to go for a second opinion). She asked if she should open it and she did. It was an appointment with the neurosurgeon. He is, in the Netherlands, one of the best neurosurgeons and know the most about IIH, shunt problems and complex CSF ( cerebrospinal fluid) disorders (like problems with the CSF not being reabsorbed like it should). He has done a lot of research about this problems and I wanted to meet him since a long time, but had problems getting the referral I needed. So I’m extremely happy I finally have an appointment with him. He really is last hope of feeling slightly better, less spinal taps/lumbar punctures and to make these headaches from hell more manageable. AND THE BEST PART ABOUT IT ALL: THE APPOINTMENT IS IN LESS THAN 3 WEEKS!!!! I’m so relieved about that, especially because I’ve received the appointment for the neurologist a week earlier, but that one isn’t until March 28. Came back from Rome today. It was so nice and I’m in love with the city, but it has really worn me out. I’ve been crying from exhaustion, pain/pressure in my and nausea. Also caught a really bad cold when I was in Rome, I think from the AC and it’s make me coughing my lungs out and give me very bad pressure headaches. But I’ve enjoyed myself very well the last 4 days. ---------------------------------- #lifeofaspoonie #embracetheunknown #srprsme #lowpotassium #secondopinion #invisibleillness #chronicillness #chronicpain #lumbarpuncture #chronicfatigue #shuntlife #hospitallife #spoonielife #spoonieproblems #intracranialhypertension #pseudotumorcerebri #miracleshappen #myheadhurts #ineedanap #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #sinusthrombosis #childhoodcancersurvivor #travelawesome #traveljunkie #bravedutchies #electrolyteimbalance #traveleurope #travelrome

[swimmiey]

It's #WorldThrombosisDay! Learn how to protect yourself & loved ones from #VTE, deadly but preventable blood clots. I was lucky we caught it in time. I've had a deadly blood clot in my brain, it's called a (cerebral venous) sinus thrombosis. Cerebral venous sinus thrombosis (CVST) is the presence of acute #thrombosis (a blood clot) in the dural venous sinuses, which drain blood from the brain. Symptoms may include #headache, abnormal vision, any of the symptoms of stroke such as weakness of the face and limbs on one side of the body, and seizures. A year later I also had a #armthrombosis and #pulmonaryembolism while being on #anticoagulants / #bloodthinners (medication that suppresses blood clotting). I was just 24 years old. Never thought it would happen to me, because I felt it was something that happens to older people, but sadly the truth is it could happen to anyone, at every age. Even if you are perfectly healthy. Given that there is usually an underlying cause for the disease, tests were performed to look for these, in my case, they still don't know what caused it, it's uncommon because it's pretty rare, and even more rare without a cause. I'm so lucky to be alive even though it’s with severe side effects. I was paralyzed, blind and could've had a cerebral hemorrhage because of it. It's different from a stroke, because it's a clot in a vein instead of a clot in an arterie (what's the case with a stroke). With sinus thrombosis my brain still received blood, but the blood couldn't return to my body. Therefor the disease was complicated by raised intracranial pressure, the pressure in my brain went up, 5 times the normal pressure, so they had to do emergency brain #brainsurgery to place a #ventriculoperitonealshunt to prevent the #paralysis and #blindness would turn permanent. #invisibleillness #intracranialhypertension #sinusthrombosis #wtday17 #stopdeathlyclots #bloodclot #keeplifeflowing #clottingdisorder #chronicillness #iihsucks #spoonielife #spoonieproblems #spoonie #butyoudontlooksick #bravedutchies

[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]

So tomorrow I'll finally meet some of the amazing people I've been talking to online. They all are fellow IIH sufferers and I don't know what to do without them. It's so nice to talk to someone who knows what it's like to have IIH. I'm really looking forward to meeting them in real life. We are having an iih lunch tomorrow. ************************************************* I don't have much to update on for now. I'm still very disappointed about my new neurosurgeon being out of office for an undefined period. The little light at the end of the tunnel that was starting to get brighter and brighter just disappeared completely after finding out, because I don't know how long this will take now. I don't know when I will have the surgery I need to ease this pressure and pain. Friday I'll be having an ultrasound done to check where they want to place my port. They prefer to do it on the left side again, because of my arm thrombosis and shunt being on the right, but it might not be possible because of scare tissue. He said there's a chance he needs to place a port in my arm instead of my chest and the ultrasound is to look for what's the best place to have my port. But he said there's a chance he will only find out during surgery the place he has in mind isn't possible and he need to switch places. That's one of the reasons I'll be on general anesthesia instead of local like they most of the times do. Also the scar tissue is one of the reasons for general, he said because of that it probably remains painful when it's done with local. Wishing you all a nice weekend. ************************************************* #chronicillness #invisibleillness #intracranialhypertension #iihsucks #pseudotumorcerebri #spoonieproblems #portacath #chronicpain #chronicfatigue #bravedutchies #iihlunch #ptcbuddies #electrolyteimbalance #surgery #shuntlife #spoonielife #shuntproblems #shuntrevision #vpshunt #lpshunt #ultrasound #myheadhurts #headachefromhell #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #totiredtofunction #ineedanap #ineedacure #icantdothisanymore

[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

[swimmiey]

I'm just exhausted. After coming home late yesterday, this morning my alarm went off at 7am because I've had a hearing for disability. After that I've had a coffee with a good friend who lives in the city my hearing was at and we met for the first time. We started talking about a year ago, but today was the first time we saw each other. After that I went to the cinema. We saw a movie called Storm: letters of fire. It's a Dutch production, so most of you probably will never be able to see it (and for the Dutch people around, it really was a great movie, based upon a true story in the 16th century). I've been trying to get some sleep since 7 pm, but the coughing is keeping me up. Also I'm extremely short of breath (even used my inhaler for the first time in forever) and I'm wheezing. I really hope I'll fall asleep any time soon. I have a final test tomorrow for my sign language class tomorrow and I'm so so nervous for that. Hope you all have a good day and/or night. Love you all. ------------------------------------------ #lifeofaspoonie #signlanguage #spinalheadache #lowpotassium #invisibleillness #chronicillness #chronicpain #lumbarpuncture #chronicfatigue #shuntlife #lowonspoons #spoonielife #spoonieproblems #intracranialhypertension #pseudotumorcerebri #miracleshappen #myheadhurts #ineedanap #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #sinusthrombosis #childhoodcancersurvivor #coughingupalung #asthmaattack #bravedutchies #electrolyteimbalance #stormlettersvanvuur #disabilityhearing #positiveenergy

[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)