Living with Nephrotic Syndrome..

Living with nephrotic syndrome;

...This was NOT the cause of my stroke  The Daily Mail got it all wrong...

What is it?.. 

'Nephrotic Syndrome is a syndrome comprising signs of nephrosis, chiefly protein in the urine, low blood albumin levels and swelling.. Essentially; loss of protein through kidneys leads to low protein levels in the blood. including low albumin, which causes water to be drawn to soft tissues" (Just read below as my mum explains it better...)

Mum always used to say "Liz, your kidneys leak protein.. if you're not weeing you need to test your wee" (I'd get given these testing strips covered in about 7 different coated coloured squares that you wee onto.. they change colour depending on 'what's in your wee?'; protein, blood and so on...)

This was a regular occurrence when I was a baby, in and out of great ormond street hospital (the sad faced baby logo hospital) I've only recently discovered that my renal doctor who diagnosed me with this was studying it (how lucky am I!)..

Throughout my life I've had a mixture of 'drugs' but it's when I leak protein that the list extends; steroids (I was always the little bloated child running around the pool with a tshirt on wishing I was skinny like the other children..) 

'You have no lips!'..

I get and have had cold sores throughout my life, nephrotic syndrome causes my immune system to be weaker than anyone else's *stay away if you have a cold!!* this is why I have no lips, cold sores have scarred them... 

So think before you actually insult me :) 

I swell up like a balloon when I 'relapse' when I don't wee because you genuinely don't wee during a relapse.. 

You just swell up (ever seen Charlie and the chocolate factory? The big purple girl)...

"She'll grow out of it during her adulthood..."

Yeah yeah.. still waiting! I have regular blood tests and still have urine testing strips next to the toilet (I always get Liam to test his..) 

To add to 'feeling normal' he finds it odd...

Waiting room life;

Always so depressing, even countdown can't make this one any better... 

you're surrounded by 'home dialysis' signs and elderly patients with drips in their arms.. this is my main scare.. 

"Will I ever need dialysis or a transplant?" 

Hopefully not!.. 

Hungry, grumpy, wide awake, fat faced(moon face) and so on..

Younger;

My mum would be in and out of hospital with me, non stop.. and I still seem to question why she cares so much... 

Spaghetti bolognaise was my favourite, until you'd find pink 'crumbs' (crushed up steroids) they were bright pink! I always found these as mum could only give them to me by hiding them in my food or dissolving them (I can STILL taste them).. 

I have my blood pressure checked all the time; for stroke, hypertension and so on.. but it kills! You get scared watching it go up "is it okay?!" ..

Every photo of me as a baby I have the chubbier cheeks! Thanks to steroids. My second birthday - the day I blew out my candles and threw up all over my cake :) 

I can't drink to much milk

Have to many eggs 

Eat 'green veg when I'm relapsing' 

Wear next to nothing (wrap up warm!!) 

Hold in my wee.. 

There's probably many more things but my brain injury is kicking in and I've forgotten.. 

*possibly why I'm currently battling a relapse* 
next patient please.....