#fanconisyndrome

[swimmiey]

A little over a week ago my NJ started to leak bile and stomach acid. Also everytime I ate or drank something it leaked out and I started to threw up formula, so I knew it had migrated from my jejunum to my stomach and needed to be replaced. It happened on Saturday night so we decided to hold my feeds for a day and called my nephrologist on Monday. They had an opening on Tuesday, so I wasn’t to long without my feeds. It needed to be replaced on the endoscopy ward with a gastroscopy. I was given versed, but was still wide awake and noticed everything that happened during the endoscopy. They tried placing it through my nose instead of my mouth like last time, but the scoop was to big so it did hurt like hell.. but I’m glad they were able to place it through my nose. Hopefully this tube stays in place for a while, because I’m really disliking the placements. My blood pressure was really low during the procedure and after (70/35) the alarm went off constantly, so they almost made me stay the night.. But luckily it came up just enough to be allowed to go home. -------------------------------------- #njtube #ifeellikegivingup #feedingtube #feedingtubeproblems #sickandtiredofbeingsickandtired #spoonie #spoonieproblems #totiredtofunction #chronichope #chronicheadache #chronicillness #chronicpain #chronicfatigue #electrolyteimbalance #invisibleillness #intracranialhypertension #sondevoeding #fanconisyndrome #butyoudontlooksick #headachefromhell #versed #hospitallife #hypotension #endoscopy #gastroscopy #endoscopie #gastroscopie #ineedacure #chronischziek #kidneydisease (bij Isala)

[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]

Today was my birthday. I will celebrate it tomorrow, since we’ve had a swim meet today. Last year hasn’t been easy, but I’ve met some amazing people who I know will stand by my side when I need them. Next year won’t be easy either, but I’m going to try to make the most out of it. For now I’m just happy to be home and to be able to celebrate my birthday at home and not in the hospital where I was admitted 2 weeks ago with sepsis. It was a close call, but they discharged me Thursday so I’m able to be home for my birthday. I’ll do an update on the last admission soon, but I need some time to write it out and I’m to exhausted to do it right now. First celebrating my birthday tomorrow with my closest friends and family, and update will follow after. ------------------------------------------- #hello28 #hospitallife #sepsissurvivor #birthday #birthdaygirl #anotheryearolder #anotheryearwiser #anotheryeargoneby #chronicillness #invisibleillness #spoonielife #greatfulforlife #newfriendsforlife #swimmeet #swimmerforlife #chronischziek #headachefromhell #intracranialhypertension #fanconisyndrome #antibioticsfordays #sepsissurvivor #butyoudontlooksick #happybirthdaytome #bye27hello28 #invisiblystrong #ineedanap #totiredtofunction #chronichope #sickbutstrong #alliwantformybirthdayisacure

[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]

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]

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]

*be brave. Even if you're not, pretend to be.* So last Friday I contacted my nephrologist, because the infection didn't seemed to have cleared at all. She told me to go to the ER, and after that I was admitted for iv antibiotics. Finally since last night it seems to be getting better. I'll probably can go home tomorrow. Just one more day of iv antibiotics. On days like this I'm even more grateful with my current nephrologist who decided to put my port back in. 4 days of iv antibiotics would've meant at least 70+ pokes to try and get an iv in (and they most of the time don't last longer than 24 hours). So yeah, I'm so happy with my port. Also I'm kinda glad they decided to admit me, I was very worried that it would transfer to my port or shunt, and that would've been extremely bad. ▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️ #chronicillness #invisibleillness #intracranialhypertension #ineedacure #ivantibiotics #antibioticsfordays #chronicpain #chronicfatigue #chronichope #ichoosejoy #cellulitissucks #portacath #bebravelovelife #totiredtofunction #shuntlife #electrolyteimbalance #fanconisyndrome #infection #kneeinfection #lovelife #hospitallife #spoonielife #spoonieproblems #ziekenhuisleven #cellulitis #iihsucks #headachefromhell #ineedanap #itneverstops (bij Isala Ziekenhuis Zwolle)

[swimmiey]

I’ve had an amazing swim clinic tonight from Olympic swimmers @idekker and @saskia_de_jonge. And even though I’m pretty tired now, I’ve had a blast. It was so nice to be able to swim again. I was so happy I was able to do this even though I was pretty tired all day, I really needed some positive energy. Doing thing like this is really helping me to get through the bad days. Big thanks to Inge and Saskia for making my day. 🏊‍♀️ #swimmerforlife #swimclinic #iloveswimming #missswimmingsomuch #chronicillness #invisibleillness #njtube #chronichope #headachefromhell #ineedanap #itneverstops #intracranialhypertension #fanconisyndrome #electrolyteimbalance #kidneydisease #kidneyproblems #kidneyfailure #childhoodcancersurvivor #nursingstudent #butyoudontlooksick #myheadhurts #positiveenergy #totiredtofunction #spoonielife #spoonie #spooniestrong #spoonielife (bij Optisport Dronten zwembad Overboord)

[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]

I’m so incredibly sad at the moment and feeling devastated. The surgeon decided my port needed to be removed because of the incision not healing and getting infected. I expected I would get a new one, but my nephrologist decided against placing a new one. This means I won’t be able to get my weekly infusions anymore, even though I was doing so well with them. He wants me to have an NG for the rest of my life and get potassium and phosphate 24/7 through it, but I really don’t want to have an NG for the rest of my life. It’s just no quality of life for me and it doesn’t guarantee my levels will be stable (that’s just based on doing it that way for a week and my levels are always stable for at least a week after infusion) Also my neurosurgeon says there’s nothing more he can do for me and he said I have to learn to live with the daily vomiting, excruciating headaches, vision loss and pulsatile tinnitus. I really feel like giving up at the moment. It’s not like I want to die, but I can hardly call this living. Being admitted 40 times in only 3 years, spending 382 days in a hospital (1/3 of the last 3 years) knowing this won’t get any better without the weekly infusions. It’s back to being admitted every 2-6 weeks, about a week each time and I just can’t do it anymore. All hope I’ve had for a little bit more stability in my life and less admissions is gone now he doesn’t want to do the weekly infusions anymore. The little light I saw at the end of the tunnel has vanished again. ----------------------------------- #chronicillness #invisibleillness #intracranialhypertension #kidneydisease #fanconisyndrome #ifeellikegivingup #icantdothisanymore #totiredtofunction #headachefromhell #shuntlife #shuntfailure #portinfection #ihatemyliferightnow #hospitallife #ineedacure #butyoudontlooksick #sickandtiredofbeingsickandtired #spoonie #spoonieproblems #myheadhurts #ineedhope #ineedamiracle #wakemeupfromthisnightmare #cryingnow #canijustsleepandneverwakeup #notalwaysahappyending #noqualityoflife #iwanttolivenotjustsurvive

[swimmiey]

I think this picture sums it up pretty well. 2017 was the year of 13 admissions 74 admission days 12 days at the infusion center Over 1500 hours in a hospital 5 surgeries Shunt and port failure. But it was also the year of being able to attend clinicals at the NICU. Being one step closer to finally graduating as a nurse. The year my little nephew was born and the year I’ve met some amazing people. Thanks for being on this journey with me. First goals for 2018: finishing nursing school and set up my home ivs so I won’t be that much in a hospital. ——————————————————— #2017bestnine #chronicillness #invisibleillness #intracranialhypertension #incurabledisease #fanconisyndrome #futurenurse #brainsurgerysurvivor #brainsurgery #electrolyteimbalance #hospitallife #myheadhurts #miracleshappen #missyousomuchithurts #almostgraduated #ineedanap #kidneydisease #butyoudontlooksick #sickandtiredofbeingsickandtired #sinusthrombosis #shuntproblems #portacath #PortProblems #totiredtofunction #happynewyear #chronicpain #chronicfatigue #homeinfusion #ivpotassium #ivphosphate