#stuffyoucan'tdowhenyourkidneysdontworkproperly

As has been obvious to many I have been unwell for the past few weeks.  Instead of trying to explain to everyone in 140 characters (impossible) i decided to blog. Usually the best place to start is at the beginning but i'm gonna start at the end!  I'm crazy like that. Live on the edge :0 LOL

So as you can tell by the title it is to do with my kidneys, although in reality it is to do with my brain.... lol  Confused??? Read on!!!

My kidneys decided they would like a rest and decided to only operate at about 10% of their full capacity about 4 weeks ago.  This obviously made me feel rather ill.  It's as important to pee as it is to poo apparently! You know the saying "if you dont shit you die"? well the same goes for peeing. 

My kidneys didn't make this decision on their own.  They were forced into it.  A "doctor", and i say that with much sarcasm, prescribed me two medications, in extremely large doses, that should NEVER be taken together.  I'll get to the why i needed these meds later.  So, i became ill.  My GP ran a blood test.  My kidney function came back as Stage 3 Kidney Failure (stage 4 daily dialysis, stage 5 transplant).  GP rang a Renal specialist who ran through my meds and immediately stopped the two offending medications.  To say he was horrified would be an understatement!   So I had scans and numerous other tests this past 2 weeks to be told last week that i have sustained permanent damage.  Not sure how much funtion will return.  Been "fitted up" for dialysis in case needed on more permanent basis.  Can now pee, feel better, and am returning to work on monday for 2 hrs, after 4 weeks at home.  Still require blood tests, fluid restrictions, iv topups, etc everyday and will need to be monitored for rest of life.  But, at least it  was picked up early enough.  Any longer and it would have been very serious indeed. 

Okay.  Why i needed the nasty meds in the first place.... i have a medical condition that's kinda rare.  There is no cure and treatment is usually trial and error.  LOL Big errors!!  It has several names, none of which really describe it well:
Idiopathic Intracranial Hypertension  - IIH

Benign Intracranial Hypertension - BIH

Pseudo Tumour Cerebri - PTC

Basically my body either produces too much cerebral spinal fluid or does not absorb the fluid it produces fast enough, or both.  The fluid pools in the brain causing huge headaches and various other problems.  Its a little like a brain tumour, as the fluid causes pressure on parts of the brain and affects the brain's function.  I've lost my fluency of speech, use of left side, had uncontrollable shakes, lost my vision.  But unlike a tumour , the pressure forms on different areas so its unpredictable and obviously can't be removed.  Obviously all those things i've experienced were tempoary and as soon as the pressure is drained via a lumbar puncture i return to normal.  The condition is not fatal, but it will cause blindness if left untreated or treatment is not successful. 

Treatment includes lumbar punctures to drain fluid, medications like diuretics (work on kidneys to remove fluid from body) or shunts in spine or brain venticles.  Shunts only have 50% success rate.  I'm not keen yet.

Fortunately, once the right balance of treatment is found the condition can go into remission and stay there for years.  I was diagnosed 12 months ago.  Had remission for 6 months.  Had 2 years of hell prior to diagnosis with no treatment or diagnosis apart from -"oh its migraines"....... So i do have some vision problems - i had perfect vision but now i have to wear glasses to drive, especially at night and probably should wear them more during the day!! 

Immediately prior to the kidney issue my neurologist and i were trying to get me back into remission after the meds i'd been on stopped working.  I'd been hospitalised for repeated lumbar punctures to drain the fluid as the pressure was high, had headaches, and was beginning to get the speech issues back. (normal pressure 5-12.  Mine 34-55) Thats when he decided to mix migraine meds with different diuretics.  Should have read his MIMS.  Pharmacist in hospital should have picked it up when dispensing my medications each day and upon discharge.  Lots of "shoulda"....

Soooooo....... now you know!!  I look normal.  The biggest problem for me on daily basis is having a headache.  Rarely take anything for it. No point.  Usually have a lumbar puncture once a month.  Doesn't hurt.  Is risky.  Weigh that risk against risk of losing vision if don't have it.  Choose LP.  And even though my kidneys did get f'ed up, the bright side of it all was that the 2 weeks on those nasty meds has appeared to put me back into remission.  Fingers crossed.  I fully intend to stay here forever.  2011 is the year of MY BIG ADVENTURE.  I am not gonna miss that because of a silly headache or peeing problem!! LOL

So #stuffyoucan'tdowhenyourkidneysdon'tworkproperly

Drink coke/caffeine based drinks/alcohol (i'm gonna ask the doc about that one again!!!)
Drink lots of anything - you swell up! I looked pregnant....
Pee - obviously
Wear shoes - feet swell
Stand up suddenly - you pass out
Eat - your body doesn't process toxins so you feel sick and vomit lots
Sleep - have to take meds every 2 hrs + 30 mins apart.  This is why i was always on twitter!!
Work

Of that list the first two only apply now thank goodness!!!

Note:
The link below is to a video made by a lady called Jenny who has IIH.  It does a good job of explaining the illness.  Everything she experiences, apart from surgery, so do i.  The surgery Jenny underwent is for a Lumbar Peritoneal Shunt, which is an option if i choose to go down that path.  If i cannot stay in remission this is the next step.  When i first saw this video i agreed with the sentiment behind the song "why did this happen to me?"  I no longer question the why - it just did!! The question i ask myself now is "what is the best possible life i can have whilst living with IIH?"  I'm on the journey!!

I had nothing to do with the production of this video.
http://www.youtube.com/watch?v=DXDlYGzAAuE&feature=PlayList&p=EBD00308D7EF919A&playnext_from=PL&playnext=1&index=23