Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello all,
I need some advice on a few things that have been consuming me lately.
1) My mother was diagnosed with PKD (it runs in the family, basically all of my aunts have this) and she's due for dialysis soon. She's 60.
2) I know I have a 50/50 chance of having this. I went and got a physical 2 weeks ago and my blood test results came out "normal" however I'm a bit of a hypochondriac and noticed a few panels were a little off (potassium, co2, BUN). I told the doctor (who is a new doctor of mine) that PKD runs in my family and she (immediately) suggested an ultrasound.
I am aware there are a few pros and cons about getting this done, such as the potential difficulties of getting life insurance / group insurance, etc. But a part of me wants to know, and a part of me feels I am maybe "too young" (i am 27).
I live a pretty healthy lifestyle, I quit drinking, I don't smoke, I work out regularly (I'm training for a marathon actually), I don't indulge in junk food, etc. etc.
So far I don't experience any symptoms (I mean I urinate often but that's probably because I drink a lot of water) but now I'm a bit worried.
What are your thoughts? Should I get the ultrasound? Unfortuately I live in NYC and my family resides in LA, so I don't have many people to ask for regarding advice.
I have it scheduled this friday.
Thank you so much.
I need some advice on a few things that have been consuming me lately.
1) My mother was diagnosed with PKD (it runs in the family, basically all of my aunts have this) and she's due for dialysis soon. She's 60.
2) I know I have a 50/50 chance of having this. I went and got a physical 2 weeks ago and my blood test results came out "normal" however I'm a bit of a hypochondriac and noticed a few panels were a little off (potassium, co2, BUN). I told the doctor (who is a new doctor of mine) that PKD runs in my family and she (immediately) suggested an ultrasound.
I am aware there are a few pros and cons about getting this done, such as the potential difficulties of getting life insurance / group insurance, etc. But a part of me wants to know, and a part of me feels I am maybe "too young" (i am 27).
I live a pretty healthy lifestyle, I quit drinking, I don't smoke, I work out regularly (I'm training for a marathon actually), I don't indulge in junk food, etc. etc.
So far I don't experience any symptoms (I mean I urinate often but that's probably because I drink a lot of water) but now I'm a bit worried.
What are your thoughts? Should I get the ultrasound? Unfortuately I live in NYC and my family resides in LA, so I don't have many people to ask for regarding advice.
I have it scheduled this friday.
Thank you so much.
There's no right answer to your question as it's a very individual decision whether to be checked. As you say, there are pros and cons of knowing. If it will give you peace of mind regardless of the outcome, it's good to know, but there are the insurance implications to consider in the US. If you are already making helathy life choices, including a low sodium diet without caffeine, there is nothing more to do at this stage except monitor blood pressure. You could take a wait and see approach, but if the uncertainty is really bothering you, it might be good to know. I'm not too sure what you mean by "too young" . Too young to show symptoms, to have a definitive diagnosis or to worry about the disease? Any of these may or may not apply, as this disease varies so much from one person to the next. Under the age of 30, two or more cysts in someone with a family history of PKD gives a positive diagnosis. Absence of cysts does not mean that you do not have the disease, however, so you may wish to wait a few years to be certain. PKD 2 may not show up until later. Your mother has done well to reach 60 before needing dialysis, so it may be that even if you have the disease, any problems associated with it are a long way off and you should just try to live healthily and not worry about things which may never happen.
Good luck,
Chewitt
Thank you for your advice. It was very insightful.
By "too young", I meant by worrying about the disease. By default, i'm a pretty sensitive person and I tend to obsess over things, so either way I have a feeling it will be stuck in my head. But at least by knowing, i'll be able to monitor.
Also, one of the biggest reasons why is because being that my mother has the disease, I also want to know if it's a possibility to donate my kidney to her. I know it's easier said than done, and chances of being compatible are not as likely as it seems, but that's also another added weight into my stress.
I just wish I had the right answer; should I get tested or not.
Another question, if I have less than two cysts, will that be a clinical diagnosis?
It's hard coming around for advice with this kind of thing.
THank you again,
Fewer than 2 cysts before the age of 30 does not give a definitive diagnosis, as you might still go to develop cysts. You can have a definite yes, but not a definite no.
There is now an added factor to consider, at least in some countries. In the UK, Tolvaptan has just been licensed to treat individuals with quickly developing PKD from stage 2. In order to benefit from such treatment, you would need to know you have the disease. Apart from this, you could decide to proceed as if you have the disease in terms of the choices you make with regard to diet, checking BP etc. without being checked at the moment. These things can only have beneficial effects anyway.
I have the feeling from your posts that you're leaning towards being checked because you're worrying about it anyway and would have to go through tests in order to be considered as a donor for your mother. The only problem is that you can't have a definite all clear just yet.