Hello from the Valley of the Sun

[Desert Dancer]

Hello, all -

My name is Mara and I'm 42 years old. I was diagnosed at age 12 with 'hereditary nephritis'; it wasn't until 2002 I had a name for it: Familial Juvenile Hyperuricemic Nephropathy (FJHN). It is a hereditary disease that has killed every member of my father's family going back untold generations, usually in their early- to mid-thirties, so I've managed to hold on longer than most.  FJHN is genetically identical to Medullary Cystic Kidney Disease II (MCKDII) but with the added feature of early-onset gout.

I've had 30 years' foreknowledge and I am a researcher at heart, so I've had plenty of time to educate myself in regard to renal failure and treatment modalities. You might think this would be a tremendous advantage (and it is) but combined with an assertive personality that brooks no BS from anyone regardless of how many degrees they may have, this makes me "the difficult patient".  What do you know: when they chide you and tell you that YOU are responsible for being a proactive member of your own health care team... well, they don't actually MEAN anything by that.  They just want to shift the responsibility to you while still expecting you to sit down, shut up and do what you're told. 

You can just tell this is going to end badly, can't you?

Needless to say, I fully intend to do nocturnal home hemo using the buttonhole technique. I had originally intended to go with CAPD or CCPD but have since reconsidered due to fears of peritonitis and - if I'm going to be honest - a touch of vanity. I'm a Middle Eastern dancer and just couldn't stomach the thought (no pun intended) of a PD catheter and bloating; at least a fistula can be hidden with costuming. I'm also not as sure about a transplant as I used to be; I may go ahead and get listed but I'm not sure I'll actually get one. I know they're considered the Cadillac of treatment options but they have their own set of issues, so I'm just going to have to play it by ear.

Anyway, I was admitted to the hospital via the ER early Saturday morning, had a catheter inserted on Sunday morning and my first dialysis session Sunday afternoon. I'm having my AV fistula put in today (8.25) and will hopefully be back home by Friday. My main concern right now is I've got to start off in a center and I am TERRIFIED of a catheter infection; I'd hoped to avoid a catheter altogether, but there you have it.  I've got to make sure I am going to be able to self-cannulate and change my own dressings until I'm up and running at home, but I have a feeling most centers around here are quite resistant to that, which means I'll have to be pushy and that will get me off on the wrong foot with these people. 

That's about it, I suppose. My story is your story; it just differs in the particulars and we all end up in the same place. I'm so glad to have found these forums; there's nothing I appreciate more than plain honesty and I have no patience for the whole touchy-feely, woo-woo positive thinking crap that passes for support most places.  The whole situation sucks and it's nice to be able to have someplace to acknowledge that without being told you have a negative attitude.

Thanks for being here!

[looneytunes]

Hi Mara, and wow, thanks for the great intro!  I'm so glad you joined our group and am looking forward to seeing your posts.   

[Rerun]

Hi DD and welcome to IHD.  Hey girl you have the right attitude!  Stand up for yourself because no one else will.  You sound like you know your stuff so don't take any crap.  I like you already!   

Just keep your catheter dry.  Get some Press & Seal and silk tape for showers and take a quick one.  You'll be just fine.

Come here for any questions. 

I can't wait to read more of your posts.

Rerun, Moderator             

[silverhead]

Welcome and I Love your attitude, keep up the fight....
Now I can't wait to see RichardMEL's reply (he's our resident Lothario from OZ)

[galvo]

G'day Mara and  .

[paris]

Welcome Mara        You posted an incredible introduction and Epoman (the site creator) would have loved it.   He loved details and information.  Your attitude is marvelous and you will fit right in here.  Epoman wanted people to have a place where we could speak openly, frankly and without censorship.  And you are right that many want to put warm fuzzies on the situation, but some days we need to yell and scream and say how much we hate this disease.  So, rant away!!    Be pushy -- it is your body.  No one else will care about you as much as you do.   Our favorite phrase around here is "knowledge is power".   I think you already know that!   Welcome, again.  I am looking forward to more of your great posts. 


paris,Moderator

[thegrammalady]

  glad you've come to join us. many of us refuse to  sit down, shut up and do what we're told. this is my life and you do it my way or you don't do it at all! so far it's worked for me.

[Bajanne]

Welcome to our community!  You intro really brightened up my morning!  I give you an A+ on Epoman's behalf!  When i was reading your intro, I said to myself 'Rerun will like this one'.  Then as I scrolled down, I saw my prophecy was true.

What do you know: when they chide you and tell you that YOU are responsible for being a proactive member of your own health care team... well, they don't actually MEAN anything by that.  They just want to shift the responsibility to you while still expecting you to sit down, shut up and do what you're told.

  You have hit the proverbial nail right on the head!  A very strange and ambiguous phonomenon!
Anyway, you have chosen a great place for information, support and encouragement.  We really consider ourselves a genuine family    Just keep reading, and PLEASE keep posting.




Bajanne,Moderator

[MooseMom]

...there's nothing I appreciate more than plain honesty and I have no patience for the whole touchy-feely, woo-woo positive thinking crap that passes for support most places.  The whole situation sucks and it's nice to be able to have someplace to acknowledge that without being told you have a negative attitude.

Oh, SNAP!  I like you!!