Hello everyone

[onesicpup]

Well just found this site, looks kind of interesting. My screen name comes more from my sense of humor that from my PKD. Not on dialysis yet, but I'm hopfull. I'm a 52 yo male with some big ol attractive kidneys.  My creatinine is 3.8 which puts my GFR at 18%. Not too bad

[Sara]

Welcome!  I hope you find this site as wonderful and informative as I have.

[Rerun]

I like your name!  You will fit right in! 

Welcome to this site.  It is a great place to vent and rant about dialysis.  You are welcome to start topics or reply to current ones. 

Visit often and spread the word about us. 

[onesicpup]

Thanks for the greetings. I'll be lurking around for a little bit to try and get to know everybody, if you all don't mind. What I've seen so far, has peeked my interest.

[Black]

Well just found this site, looks kind of interesting. My screen name comes more from my sense of humor that from my PKD. Not on dialysis yet, but I'm hopfull. I'm a 52 yo male with some big ol attractive kidneys.  My creatinine is 3.8 which puts my GFR at 18%. Not too bad

Welcome!  I've been here only a short time myself but this appears to be a really great group of people  I'd advise reading all of the intros to get an idea who everyone is.  I've already gone back a few times to reread to refresh my memory -- senior moments getting more frequent

My hubby has PKD - about 15% function  creatinine 4.1 last week.

BTW, like your s/n 

[onesicpup]

Like I said the s/n is more the sense of humor than of my PKD. My function is around 19% and my doc says I'm "YEARS" away from needing anything, whats comical is that my insurance company wants me to get a fistula and start seriously looking into my options. Doc got all snippy about it.

[hyperlite]

Hahaha "years away" i heard that one..."dont worry, it won't be until you're at least 40 that your kidneys will even start to fail"...well they were only about 20 years off on that one hahaha

[Black]

Like I said the s/n is more the sense of humor than of my PKD. My function is around 19% and my doc says I'm "YEARS" away from needing anything, whats comical is that my insurance company wants me to get a fistula and start seriously looking into my options. Doc got all snippy about it.

Screw the Doc.  

First of all, NEVER, NEVER, NEVER let anyone take blood from any of your arm veins.  They should use the veins in your hands.

Be prepared to become your own doctor and an expert on PKD.  When you hear the usual "there is no treatment" then you know have a big job ahead of you, educating another ignorant *&%$#&@.

Check out: www.pkdcharity.co.uk

www.pkdcure.org

www.gpnotebook.co.uk

www.emedicine.com/med/topic1862.htm#section~differentials

In the meantime, find a Nephrologist who is treating other PKD patients -- ask the appointment clerk BEFORE you make the appointment how many PKD patients they see and don't make the appointment until you know.  You don't want to be the only one, or one of just a few -- PKD treatment and progression is far different from other CKD and many Nephs don't know enough to treat PKD patients.  If you don't have a choice, live in a small town, etc., be prepared to educate the Neph.

At your FIRST appointment ask who he would have do a fistula for one of his own parents and get a referral ASAP.  In the meantime, start looking for a VASCULAR surgeon who does frequent fistula surgery.  (You could ask how many he does each month, and how many of those are Cimino, and how many are functional after one year of use, BUT chances are he won't know. )  Start NOW squeezing a rubber ball to increase the size of your arm veins in your non dominant arm -- start w/ one minute out of every hour and build from there.  Check out:  www.fistulafirst.org

You may already know this but far too many of the medical professionals who are paid to treat you don't give a sh*t -- it's just a job w/ a paycheck and sometimes a big paycheck which YOU help pay.  When you find one of the few who do care about you and know what they're doing -- be very, very good to them and always thank them for their good care.  Check out:  www.lifeoptions.org

There are things you can do to prolong the life of your own kidneys, add to the quality of the rest of your life, and do for others in your family w/ PKD.  You biggest adversary is ignorance and the tools are at your fingertips online.

[Epoman]

Like I said the s/n is more the sense of humor than of my PKD. My function is around 19% and my doc says I'm "YEARS" away from needing anything, whats comical is that my insurance company wants me to get a fistula and start seriously looking into my options. Doc got all snippy about it.

Screw the Doc.  

First of all, NEVER, NEVER, NEVER let anyone take blood from any of your arm veins.  They should use the veins in your hands.

Be prepared to become your own doctor and an expert on PKD.  When you hear the usual "there is no treatment" then you know have a big job ahead of you, educating another ignorant *&%$#&@.

Check out: www.pkdcharity.co.uk

www.pkdcure.org

www.gpnotebook.co.uk

www.emedicine.com/med/topic1862.htm#section~differentials

In the meantime, find a Nephrologist who is treating other PKD patients -- ask the appointment clerk BEFORE you make the appointment how many PKD patients they see and don't make the appointment until you know.  You don't want to be the only one, or one of just a few -- PKD treatment and progression is far different from other CKD and many Nephs don't know enough to treat PKD patients.  If you don't have a choice, live in a small town, etc., be prepared to educate the Neph.

At your FIRST appointment ask who he would have do a fistula for one of his own parents and get a referral ASAP.  In the meantime, start looking for a VASCULAR surgeon who does frequent fistula surgery.  (You could ask how many he does each month, and how many of those are Cimino, and how many are functional after one year of use, BUT chances are he won't know. )  Start NOW squeezing a rubber ball to increase the size of your arm veins in your non dominant arm -- start w/ one minute out of every hour and build from there.  Check out:  www.fistulafirst.org

You may already know this but far too many of the medical professionals who are paid to treat you don't give a sh*t -- it's just a job w/ a paycheck and sometimes a big paycheck which YOU help pay.  When you find one of the few who do care about you and know what they're doing -- be very, very good to them and always thank them for their good care.  Check out:  www.lifeoptions.org

There are things you can do to prolong the life of your own kidneys, add to the quality of the rest of your life, and do for others in your family w/ PKD.  You biggest adversary is ignorance and the tools are at your fingertips online.

VERY GOOD POST, great information and links. Thank you for taking the time to help our member "Black". 

[Black]

Thanks for the kind words but you are the one who deserves the thanks -- for making possible a forum where everyone can say what they think and not worry about a moderator being offended by the honesty of what is being said or accusing the poster of having a bad attitude!!

[Epoman]

Thanks for the kind words but you are the one who deserves the thanks -- for making possible a forum where everyone can say what they think and not worry about a moderator being offended by the honesty of what is being said or accusing the poster of having a bad attitude!!