Hello! warning: long story

[RichardMEL]

lol Jadey - love the story about writing the application - I don't mean to laugh, but it's kind of funny the way you write it - I can imagine that situation and the kind of irony there - then the comment because of the toxins it was shit! Sounds like you have a pretty awesome attitude going there - coupled with your "I'm going to get on with life" thing youy'll do well like I wrote earlier. love it.

hmm I dated a microbiologist briefly in the 90's (oh god I feel SOOOOOO OLD!)... Alas she would start talking about all the micro-organisms and bacteria lurking on the skin let alone in mout, and somehow that put me off the notion of kissing her.....  so here's a future tip - try not to put off future partners with stories from the lab!!!! You'll thank me later

Yeah, Australia is a pretty awesome place I think, but I'm kind of biased - but I prefer Canada to Sydney (sorry Sydneysiders, but that's how I feel, and it's got nothing to do with the Melbourne/Sydney rivalry thing!).... either way it's all good... and who knows when your chance may come - maybe after transplant.. you never know!!! I'm glad your friend got accepted though - even if it was in Sydney !! and they can do what they want!! 

[SooMK]

Hi Jadey and welcome! When I was diagnosed with FJHN the only one in my family with kidney disease was my mother who had died about 10 years previously. I had lived until my 60s feeling fine until my PCP caught my creatinine getting too high. I had been anemic my whole life but I'm not sure that means anything. I'm told my kidneys look just fine. My neph did a genetic test because it seemed like the only thing it could be, even though the disease is rare, and that's what it was. He said they believe it is frequently undiagnosed. The other thing about FJHN is that it usually affects younger people. And although it generally runs in families it didn't "run" in my family until me. I'm just throwing this out there because it seems possible that a genetic test might give you the cause. I think knowing the cause of kidney disease is important. Best of luck and keep posting!

[jadey]

Hi Jadey and welcome! When I was diagnosed with FJHN the only one in my family with kidney disease was my mother who had died about 10 years previously. I had lived until my 60s feeling fine until my PCP caught my creatinine getting too high. I had been anemic my whole life but I'm not sure that means anything. I'm told my kidneys look just fine. My neph did a genetic test because it seemed like the only thing it could be, even though the disease is rare, and that's what it was. He said they believe it is frequently undiagnosed. The other thing about FJHN is that it usually affects younger people. And although it generally runs in families it didn't "run" in my family until me. I'm just throwing this out there because it seems possible that a genetic test might give you the cause. I think knowing the cause of kidney disease is important. Best of luck and keep posting!

What is FJHN and do you know how a genetic test works? I knew there was a test you can do to see if its genetics and I don;t know why they didnt offer that to me

[SooMK]

Hi Jadey, FJHN is familial juvenile hyperuricaemic nephropathy (sorry, should have put that in there). It has a few other names too. My actual diagnosis was uromodulin-associated kidney disease because the genetic defect is in the uromodulin gene. The genetic test is done via a blood test. I believe the genetic testing is pretty expensive so that might enter in to why it's not offered. Also this disease isn't very well known even by nephrologists. You might find this link useful: http://www.wakehealth.edu/nephrology/gout/. This group specializes in uromodulin-associated kidney disease.

[lmunchkin]

Welcome &     to you.  So sorry about your situation, but thankful for your story.  I don't have this disease but spouse does have ESRD.  His was due to High B/P & Diabeties.  Sure hope you find your answers soon!

Again Welcome,
lmunchkin