Polycystic Kidney Disease (PKD) Support Group

Reply #1 - 06/26/09 2:49pm

*hugs*

It's a choice dear....even though it's a hard one.

I am so sorry that you already feel like it's a burden.

If your kidney function is at 100% there is nothing the doctors can do for you if you do have PKD.

That is the key factor.

My kidneys are huge and cause pain every day....but they're working :) So I am thankful.

I wish I had more advice....maybe it's better to know some facts. Even if you do have cysts...that doesn't mean anything really if your kidney function is perfect. It just means that someday (or maybe not ever) that your kidneys may start to fail.

PKD is so strange like that...there's really no way to tell what it's going to do next.

Think about it...sleep on it...discuss with your doctor.

There are plenty of people to talk to and plenty of information available to help you make a decision.

I wish you well! And keep us posted!

Reply #2 - 06/27/09 6:23am

i knew i could have it at an early age as well. My mother had it and suffered from it so i knew however i also was a healthy person and remained so till my 50th birthday. At 40 i was still playing tackle football with the 20 somethings and i was one of the best players on the field :-) Well thats my opinion anyway. So what i am trying to say is this, people with this disease suffer from it at WIDELY varying degrees. Don't know why but people like my mother just about shut down whereas i was able to stay very active, even now while on dialysis because my kidneys have failed i am preparing to get on my bicycle and see if i can get about 60 something miles in before it gets too hot (Texas).
So yes you might have it, and yes it can completely wipe you out, it does to some, but yes some of us are still able to stay pretty active. Thank God i am one of those, wish i knew why.
Personally, i would get tested and i would investigate all i could about nutrition and the disease itself to see if anything i could do would delay the kidney failure because before that i was pretty normal, pain?, yes there was pain but the kidneys were functioning and you just don't know how much they do for ya.
Children? i don't have any, wish i did and glad i don't if that makes any sense. Would i if i could do it over? Don't know. But like Jen said its a personal choice.

Tami67

Reply #3 - 06/27/09 10:14am

Two "simple cysts" in one kidney doesn't mean that you have PKD. With a normal kidney function at 31, chances are your kidney function, IF you have PKD, will stay normal for a long time. It took me over 20 years to go from normal to 31% function and my family has PKD1 which is the mose aggressive form. My grandmother was on dialysis at the age of 35 and her father died at 52 from renal failure. My mom lasted until she was 58 before going on dialysis. I know I won't last as long as her, but I've lasted longer than my grandma. Here's a positive note: If you have a negative ultrasound after the age of 30, then the scientists say you do not have PKD and never will. If you only have a few cysts, then you probably have PKD2 which is very slow and most people die of old age before their kidneys ever quit.
My oldest daughter is 21 and she just got an ultrasound a month ago. No cysts! For us,t that's huge news! I had so many at her age that they couldn't count them! She's not entirely out of the woods because it's not a guarantee that you don't have it unless there are no cysts after age 30, but we know in our hearts that she's been spared from dealing with this. She's going to have genetic testing done, just to make sure, but only if she finds someone she wants to marry before she is 30, just to be 100% sure.
Keep your chin up! It's a hard reality to deal with, if it's your fate to deal with it, but it's managable and you can lead a relatively normal life for a long, long time.
Get an ultrasound. Knowing is much easier to cope with than wondering and worring.
Tami

Reply #4 - 06/27/09 1:47pm

Atheo:

My mother's kidneys look a heck of a lot better than mine and she's already losing function at 45. It's just boggling to me....but I do understand as much as the doctor's do as to why...which is...."we have no clue"

But I just accept it and help her out where I can...surprisingly, knowing my mother....she's handling it all very very well

we all can only do one thing...and that's the best we can :)

Reply #5 - 06/29/09 6:36am

The Drs really didn't help me much, i was diagnosed in the middle 90s and they really didn't have ANY info for me, no help except to try and lower my BP. It was exasperating and i just dropped it all till they (the kidneys) finally failed.
My mom decided not to be treated and when her kidneys failed that was it for her. personally i thought about it but finally went to the hospital after mine failed, glad i did because i feel better now that i have for a decade or more. With a new kidney i am planing to ride my bike across the country to promote organ donation. :-)

Reply #6 - 06/29/09 3:50pm

Yay!

that is so awesome :)

Please keep us posted :)

Reply #7 - 06/30/09 6:38am

actually i tend to talk about it too much so when you have had enough let me know :-)

Reply #8 - 06/30/09 9:37am

Oh, pshaw!

What else is Daily Strength for??

;)

Reply #9 - 06/30/09 7:19pm

well i post my ride mileage and particulars at another site but i could include the highlights on my blog here and you are right what else is daily strength for? Thanks for the reminder ;-)

TGM