Hi, I was diagnosed two years ago, with no family history. The Nephrologist I saw told me that until you have two or three years of blood test results to show your kidney function, you can't really know how fast your function is declining, or whether it's stable. My function is at about 60% and I have annual blood tests. I gather that when it falls below a certain level, it needs more frequent monitoring. I try to look after myself, and my function has not changed in three years.
I wish you well.

Thank you, Chewitt!

I wish you well, too :)

In the UK you are put on dialysis when your kidney function (egfr) is 10%. Chewitt - your kidney function is really really good!!! And the fact that it is stable is such a good sign.

First let me say that you have a similar history as mine, at least as far as family denial and not taking care of themselves. My mother was told that she would live to be an old women before her kidneys caused her problems, even though her mother went on dialysis and the tender age of 35. So she kept on doing what she always did, deny there's an issue, continue her unhealthy lifestyle and then bam!! At the age of 51 she finally went to a nephrologist and her function was only 51%. To make matters worse, she had a MRI/MRA done as a baseline (people with PKD are known to develop aneurysms) and she had a huge one. Within the year she had three seperate brain surgeries and in 07 she started dialysis. I'm glad to hear that you are taking this disease seriously. There's really no way to predict how long your kidneys will last, but family history is a strong indicator. You've had quite a few family members progress to renal failure prior to their 70's or 80's, which indicates to me that you probably have the PKD1 gene. This form of the disease is know to be much more agressive than PKD2 with an earlier age of renal failure (typically your 50's, but it can be much earlier). My nephrologist at Mayo told me not to worry until I started developing high blood pressure. That's when they know that your kidneys are impacting your bodies ability to keep your blood pressure normal. I was diagnosed in 1997 with high blood pressure, 9 years after I was diagnosed with PKD. My renal function stayed in the 90% function range until 2004, then dropped to 72%. Since 2004 I've steadily declined and now I'm at 38% and I'm 41 years old. It's been 20 years since my diagnosis. My rate of decline is about 4 to 6% a year, which is average once you go below 50& function. My advice is to see your neph anually, watch your blood pressure, stay away from activites that could cause you to damage a kidney and drink plenty of water. Enjoy your life to the fullest and be your own advocate when it comes to your health. Hopefully, you will have another good 10 to 15 years before you have to start worrying about the big stuff.

Family history dictates when your kidneys may fail. You have approximately 60% chance of kidney failure - or in more positive 40% of it NOT.

Taking care of yourself (low blood pressure, weigh control, etc) will help anyone keep their kidney function, but family history will determine the PKD part of it. If your family went into kidney failure in their mid-40s then you should be cautious around that time to have closer monitoring.

Best wishes...keep faith close to your heart.

I'm like you, my family always denile of this, as my Dad suffer's with it and he's 71, seems to be ok, but I've had quite a few bouts of pain, even been rushed to hospital, I don't understand much about the signs of failing, as no one tells me.
with you all on this site.

Hello. This support group is great, some of the stories are inspirational and make me feel more relaxed that I am not the only one who suffers from PKD.

Im 24 years old, and I have a child at 5. I was diagnosed with PKD when I was 12 after a serious bout of kidney infections. My mother has PKD so we know where I got it from.

I was told in October that my kidney function is half as low as it should be and that I will be guarenteed dialysis when im older. Im taking one 10mg ramipril daily to control my blood pressure.

My biggest fear is that I was told by two seperate consultants that If I wanted to have more children that I should think about starting now while Im younger, as, they say, that after the age of 30 my health will be worse which includes blood pressure and kidney function.

With my child I was hospitalised with suspected Eclampsia and I was quite ill after the natural birth, having collapsed two hours after. The doctors are worried that the risks will be higher for both me and baby if i get pregnant when im older.

The problem is, Im in the middle of University and I really really really want more children, but Im not sure of what to do...is it worth getting a third opinion? Me and my partner of 8 years have spoke about it, he would rather me finish my degree, maybe not understanding how much I want another child.

Im just wondering if anyone else has been told anything similar or has been in a similar position?

Any advice is much appreciated as its really starting to get me down now...thank you!

Yes, Jahooblie...

I have been told this as well.

They told my mother the same thing and she has 4. Two of them were well into her 30s. Everything was ok with no complications the only problem is 3 out of the four of us now have PKD because it is a genetic disorder.

There's a fifty/fifty shot of passing it on, and of course there are risks of complications especially as you get older.

In my opinion, it's a personal choice. If you feel you should get a third opinion, then my all means do it.

I want children very, very badly as well but I don't really see that happening for me so I just spend a lot of my time babysitting and caring for my nephew. ;) I also don't want to risk passing it on to my child. (I'm not saying that anyone with PKD shouldn't have children, I'm just saying that's my personal choice.)

If the doctors flat out tell you that it's a terrible idea and that you or your baby have a chance of dying during the birthing process, etc. or anything other that's drastic like that then of course I would imagine you wouldn't go through with it.

But there are risks for complications in pregnancy even for healthy women.

So, again....it's you and your partner's personal choice and I would just consider all options.

:)