New member

[Lis]

Hello all,
What a great forum!  Had an MRI for my back 3 weeks ago and they found polycystic kidneys (along with a back problem).  I'm 58 years old, with kidney labs that have been steadily going downhill for the last 5 years (and I did have pre-eclampsia in my 30s when I gave birth to my daughter with intractable BP after that).  My doctor knew something was up, but not until my most recent lab results and the MRI which came in at the same time did I get the diagnosis.  My doctor (GP) told me I'm in Stage III, but my eGFR is 27, which I think is Stage IV, yes?  Have to wait until December (!) to get an appointment with a neph.   At least I am very fortunate to have good health insurance through my husband.  I have found a wealth of information on line, some of it very helpful and some of it scares the bejeebus out of me. 
Be well everyone, Lisa

[MaryD]

Welcome, Lis!     

It is a great forum, with lots of support and information.  eGFR of 27 isn't the best but I lasted about 10 years at that stage before I had to start dialysis.  I hope your decline is as slow as mine.  Keep us posted.

[Lis]

Thank you for the reply.  May I ask what you did to stay at that GFR / Stage IV for so long?

[Sydnee]

Hello Lisa,
I have PKD also. did they test other organs and your brain?
I have known about my PKD for 24 years now. Only had BAD GFRs for the last few years. After my last child 6 years ago. Pregnancy was hard on me too.

Welcome  nice to meet you. 

[Lis]

Hi, no, I haven't been tested yet for anything else.  I was diagnosed in October and referred to a neph, and his first opening isn't until December.  So I will have many pent-up questions for him.

[MaryD]

Lis - I vaguely followed the pre-dialysis diet (careful consumption of protein, keep an eye on potassium, etc).  I didn't have PKD;  in fact no-one knows why my kidneys are failing.  As instructed by my kidney specialist I did carefully drink two litres of fluid - mainly water each day.  Everyone's decline is different.

Be sure and take a written list to your appointment.  There is nothing more frustrating that getting home and remembering all the things you meant to ask.

[Cordelia]

Hi Lis, It's nice to meet you       

Welcome to the forum,

I have PKD too. I also had severe preeclampsia with all my pregnancies.

[Mr Pink]

Hi, welcome to the forum. I hope you stay in the 20's for as long as possible. I lasted about a year. I occasionally think about the things I should've done to stay there and didn't, but alas, a bit late to dwell on that now. All  can say is what they tell you to do, do it. But know that should things go south, that dialysis isn't the end of the world. I'm still pretty new to it, and it's far from the worst thing in the world. Be strong, be brave, be courageous, and above all, be positive.

[boswife]

Hi and welcome   my hubby (the one on D) held those 20's for many years and i think they would have lasted a lot longer but for outside things that took place.  ie,,,, had issues that needed medicines that wernt filtering well (due to kidneys) and they built up in him and well, here we are.  You have found a great place for support and friendship.  It's amazing to talk to so many who have either been there, or have a loved one who is there.   

[Lis]

I just had an appointment with my GP, who is very nice and whom I like, but just wondering how much she really knows about PKD.  She said "the vast majority of people with PKD never need dialysis."  Hmmmm . . . from everything I have read on line it says about 60% of people with PKD end up on dialysis eventually.  As I said, waiting for December appointment with kidney doc.

[Poppylicious]

  Lis!

[Sydnee]

What do you know about your family?

(this is just my opinion)
I think how your family reacted to PKD is the best indicator of how you will.

I am an only child so can't look at my siblings. My mother had PKD and 2 of her 4 sisters did/do. My grandfather (mother's father) had PKD and 4 of his 6 siblings had PKD.  My mother and her father died of a brain aneurysm before kidney failure (age 53) all other PKD relatives needed dialysis or a kidney. Some of them lived for quite a long time.  86 years for uncle John (mom's uncle actually).

Not trying to be grim. Just showing how family history plays a part. I'm only 38 so I hope I live a while longer.

[lmunchkin]

Hi Lis and Welcome.  You have found a unique site here that will guide you in everyway.  We are so fortunate to have found them!  Hope you will come here and post your questions and give some of your insight too!

Again welcome & God Bless,
lmunchkin

[looneytunes]

Hi Lis.   

[Wat76]

Hi lis, I have PKD and had preeclampsia as well. I have been doing dialysis for 4 months, not as bad as I thought,  Welcome.

debra