#shuntproblems

[swimmiey]

Almost done with the last preparations.. will be taken to the operation room in about 30 min. #shuntlife #shuntproblems #shuntrevision #spoonielife #brainsurgerysurvivor #brainsurgery #chronicillness #invisibleillness #intracranialhypertension #ineedacure #incurabledisease #iihsucks #pseudotumorcerebri #portacath #electrolyteimbalance #headachefromhell #myheadhurts (bij Radboudumc)

[swimmiey]

Last Sunday I started to have a fever, not good when you're already on iv antibiotics. I decided to wait and see if it would go away, but after an horrible night I still had a fever so I called my nephrologist. When he called I've had a 39,6C/103.3F fever, so he wanted me to go straight to the emergency room for blood work and blood cultures. My PICC line didn't have any blood return, so they had to do it by arterial puncture. I was admitted with a sepsis, because my blood pressure was only 75/25 and my heart rate was around 130. Wednesday I've had surgery to remove my infected port (originally this was to replace it, but because of the fever they only removed it), but they didn't place a new one yet. It was planned to do it next week, but they changed plans and won't do it for another 3 weeks, until they're completely sure I won't have fevers or blood cultures that are growing anything anymore for at least a week after finishing antibiotics. They also pulled my PICC line and placed a new one, just to be sure the bug wasn't on there either. They couldn't place it in one try, because my veins are so bad. I'm home now, but don't feel great. Head is pounding and I'm extremely nauseous from this new antibiotics. Also it's just a bummer that I also have to wait even longer for my shunt revision now and need an extra surgery to place my port back. Sometimes I just hate my body. When the on call nephrologist for this weekend heart I was hesitant to go home, afraid something would go wrong again, she gave me her private mobile phone number, so I can call her directly if I don't feel well or trust it. Also find out my hemoglobin it really low. ----------------------------------------------- #chronicillness #invisibleillness #portacath #portacathsurgery #PortProblems #piccline #sickandtiredofbeingsickandtired #hospitallife #neverendingstoryofmylife #highfever #sepsis #sepsissurvivor #portinfection #intracranialhypertension #spooniestrong #spoonielife #spoonieproblems #shunttap #shuntproblems #shuntrevision #ivantibiotics #antibioticsfordays #myheadhurts #chronicpain #chronicfatigue #totiredtofunction #butyoudontlooksick #lowbloodpressure #hypotensive #lowhemoglobin (bij Isala Ziekenhuis Zwolle)

[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]

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]

My new medical ID bracelet from @laurenshopeid came in the mail today. I'm so exited about it and couldn't be any happier with it. Rather wouldn't need one, but since I do I just want a pretty one. Today I've had an appointment with the physician assistant and it didn't go exactly as hoped. The intracranial pressure (icp) readings were way to high when laying down, but standing up the numbers went straight into the negative. This means my shunt still drains to much standing up, making my shunt go vacuum so it stops draining and giving me high pressures. But for now the neurosurgeon doesn't want to change anything in the settings of the valve, because of the pulmonary embolisms and wanted to let my body try and heal from that before changing the settings, because he's afraid he would make things worse when he's changing it now. So I'm facing another 3 months of these excruciating headaches, nausea, vomiting, strength loss and vision loss.. I'm just so ready for some relief.. and I'm just feeling devastated that it seems like changing the shunts valve hasn't done anything so far. Tomorrow I have a phone consult with my nephrologist, my potassium and phosphate levels are dropping the again.. Really hope I don't need any iv potassium anytime soon ▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️ #neverendingstoryofmylife #itneverstops #iihsucks #totiredtofunction #sonauseous #myheadhurts #feelingdefeated #invisibleillness #chronicillness #chronicpain #chronicfatigue #chronichope #chronicheadache #butyoudontlooksick #intracranialhypertension #pseudotumorcerebri #headachefromhell #justspooniethings #justwanttosleep #justwantrelief #shuntlife #shuntproblems #shuntrevision #spoonielife #medicalalertbracelet #ineedacure #ifeellikegivingup #electrolyteimbalance #brainsurgerysurvivor (bij Radboudumc)

[swimmiey]

So I've had an amazing art workshop yesterday with my best friend. This is the result of it, reminding me some day I'm gonna be okay. On the drive home I saw an amazing sunset 🌅 I had to stop and take a few pictures. The workshop was fun, smashing with paint and getting al my frustrations out. I'm not doing so well. What I thought was just the aftermath of shuntsurgery and pulmonary embolisms, might turn out to be the last thing I want right now. On Tuesday I've made an appointment with my gp, because I was not feeling well and extremely exhausted. He wanted to make sure everything was okay so made me do bloodwork on Wednesday. He said to call today (Thursday) for the results of it. But yesterday at 12am, just 3 hours after the blood work, my gp called because he got a call from the hospital that my blood showed extremely high inflammatory levels. Other than that, I don't show any signs of infection so it's guessing where the source of the infection is. And now I'm so scared and worried, because last year the exact same thing happened. High inflammatory levels, but no obvious source. This kept going on for about 8 weeks, and at that point it turned out to be my vp shunt that's infected. Last year it was a very slow growing bacteria, so it didn't show up in cultures done from the liquor they get with the LP, it didn't grow in my blood.. just did grow in the liquor they took directly from my vp shunt. So right now it feels like I'm having flashbacks, it feels like this all happened before. To be honest, I'm scared. I've never been this scared before. Because my shunt being infected again also explains my symptoms and why they aren't getting better after last surgery. Last time they didn't get better either. Tuesday I have an appointment with the neurosurgery physician assistent (PA) and all I can hope for is that she will take this seriously and look further into it. Also hope she will discuss my concerns with the neurosurgeon. ▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️ #iihsucks #lpshunt #vpshunt #shuntlife #shuntproblems #shuntrevision #shuntinfection #invisibleillness #chronicillness #chronicpain #chronicfatigue #chronichope #intracranialpressure #myheadhurts

[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]

I finally got my lumbar puncture today. I had a really nice resident who did the LP. I was a little nervous, because last time they hit a nerve pretty bad during the LP, but she was just amazing and had it in one try. Almost didn't hurt. The intracranial pressure was, as I expected, to high and she asked me how much they drained during the other lps. So she drained 40ml of csf (instead of following protocol like the most residents do). I told her they always try to bring it down to 10 or lower, because that's when I have the least amount of symptoms, so after draining 3 tubes she measured the pressure again and decided to do one more. It's such a relief not having that huge amount of pressure in my head anymore, not throwing up non stop anymore.. so I was discharged from the hospital for the next 4 days. Monday I will be admitted again, but in a different hospital and Tuesday I'll be having another (brain)surgery. I'm so extremely grateful I've got my port again, because it really was a lifesaver the last 12 days in the hospital. Without my port it would have been impossible to get iv fluids for 12 days, 3x a day Metoclopramide iv, blood work. Wasn't able to ear or drink (or I just threw up right after having it) so I really needed the iv fluids and Metoclopramide iv. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ #chronicillness #invisibleillness #intracranialhypertension #hospitallife #ziekenhuisleven #ivfluids #iihsucks #lumbarpuncture #brainsurgerysurvivor #brainsurgery #dailyheadaches #portacath #butyoudontlooksick #chronicpain #chronicfatigue #chronichope #intracranialpressure #Metoclopramide #sinusthrombosis #sickandtiredofbeingsickandtired #ineedanap #ineedacure #spoonielife #shuntlife #shuntproblems #shuntrevision #spoonie #spooniestrong #spoonieproblems #neurologie (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]

Got my port surgery yesterday. It all went well (even though it took them about twice as long as planned). It’s on the left side again. Feeling a little bit soar today, but the pain is manageable. The surgeon accessed my port in the OR when I was still under, because I need it today for my weekly infusions. It’s a good thing he did, because as soon as I was in recovery/out of surgery my iv stopped working. Now at the day center for my iv potassium and phosphate after that I’m allowed to go home. Tuesday I’ll have an appointment with my neurosurgeons PA and hopefully they’ll have a surgery date for my shunt revision, because this pressure headaches are becoming unbearable. Fingers crossed 🤞 my nephrologist gave them the all clear for surgery. -------------------------------------------- #portacath #portacathsurgery #portsurgery #portinfection #PortProblems #invisibleillness #intracranialhypertension #chronicpain #chronicfatigue #chronichope #chronicillness #chronicheadache #butyoudontlooksick #fanconisyndrome #brainsurgery #vpshunt #shuntlife #shuntproblems #hospitallife #hypokalemia #hypophosphatemia #surgeryday #sickandtiredofbeingsickandtired #totiredtofunction #ineedanap #fingerscrossed #scarsforlife #spoonielife #scarsaretattooswithbetterstories (bij Isala Klinieken Zwolle)

[swimmiey]

The estimated one billion people living with disabilities worldwide face many barriers to inclusion in many key aspects of society. As a result, people with disabilities do not enjoy access to society on an equal basis with others, which includes areas of transportation, employment, and education as well as social and political participation. The right to participate in public life is essential to create stable democracies, active citizenship and reduce inequalities in society. International Day of Persons with Disabilities falls on the 3rd of December each year, with the aim of promoting empowerment, and helping to create real opportunities for people with disabilities. This enhances their own capacities and supports them in setting their own priorities. Empowerment involves investing in people – in jobs, health, nutrition, education, and social protection. When people are empowered they are better prepared to take advantage of opportunities, they become agents of change and can more readily embrace their civic responsibilities. --------------------------------------------- #internationaldayofpeoplewithdisabilities #IDPD #idpd2017 #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #fanconisyndrome #kidneydisease #kidneyproblems #kidneyfailure #sickandtiredofbeingsickandtired #vestibularschwannoma #jointhypermobilitysyndrome #hypermobilitysyndrome #hypokalemia #hypophosphatemia #portacath #nah #nietaangeborenhersenletsel #sinusthrombosis #piccline #butyoudontlooksick #headachefromhell #awareness #ineedacure #spoonielife #shuntlife #spoonieproblems #shuntproblems

[swimmiey]

The estimated one billion people living with disabilities worldwide face many barriers to inclusion in many key aspects of society. As a result, people with disabilities do not enjoy access to society on an equal basis with others, which includes areas of transportation, employment, and education as well as social and political participation. The right to participate in public life is essential to create stable democracies, active citizenship and reduce inequalities in society. International Day of Persons with Disabilities falls on the 3rd of December each year, with the aim of promoting empowerment, and helping to create real opportunities for people with disabilities. This enhances their own capacities and supports them in setting their own priorities. Empowerment involves investing in people – in jobs, health, nutrition, education, and social protection. When people are empowered they are better prepared to take advantage of opportunities, they become agents of change and can more readily embrace their civic responsibilities. --------------------------------------------- #internationaldayofpeoplewithdisabilities #IDPD #idpd2017 #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #fanconisyndrome #kidneydisease #kidneyproblems #kidneyfailure #sickandtiredofbeingsickandtired #vestibularschwannoma #jointhypermobilitysyndrome #hypermobilitysyndrome #hypokalemia #hypophosphatemia #portacath #nah #nietaangeborenhersenletsel #sinusthrombosis #piccline #butyoudontlooksick #headachefromhell #awareness #ineedacure #spoonielife #shuntlife #spoonieproblems #shuntproblems

[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]

Ever since I woke up this morning I've been throwing up non stop. I went home early from clinicals because I just couldn't do it anymore. Half the time I was there I was hiding in the bathroom, throwing up. Just took a 5 hour nap, woke up with even more pain. I just can't handle this anymore. If it doesn't get better tomorrow I might call my neurosurgeon, because I can't do this for another 6 weeks. I'm so over it, I'm at the point I'm almost begging them to do a lumbar puncture, even though I know they can't because of them not wanting to stop the blood-thinners anymore. This situation is just so fucked up.. needing an LP, but can't get one because I will probably end up with another pulmonary embolism.. sometimes I just hate my body and it's mysteries.. sorry for the rant.. I'm just so tired of this never ending pain ------------------------------------------------------- #nauseous #neurosurgeon #iihsucks #intracranialhypertension #myheadhurts #headachefromhell #totiredtofunction #invisibleillness #chronicillness #pseudotumorcerebri #chronicpain #lpshunt #vpshunt #shuntlife #lumbarpuncture #shuntproblems #sickandtiredofbeingsickandtired #butyoudontlooksick #ineedanap #ineedacure #makeitstop #ithurtssobad #spoonielife #spoonieproblems #spoonie #sinusthrombosis #pulmonaryembolism #painsomnia #chronichope #chronicheadache