First post, and a question about Polycystic Kidney Disease

[Ctenophore]

Hello everyone,

I am 28, and haven't had any brain injuries or serious health events yet. I have also not had to care for anyone who has.

Since joining headway I have done so much reading into aneurysms, SAHs, hypoxia, and glimpsed the depth of the emotional/psycholocical turmoil that follows, for everyone on both sides, the survivors and the carers. Every day I am moved by the great compassion of this community.

I joined headway because my father was diagnosed with Polycystic Kidney Disease (PKD), and then undiagnosed; another doctor reckons my dad bafflingly has only one functional kidney with a few big cysts. Then he was told again that it's probably PKD and is awaiting results of a genetic test.

If it's true then I have a 50 percent chance of having that. And of those with PKD I have read 1 in 10 developed an aneurysm.

I started to educate myself on aneurysms and uncovered so much information I was entirely ignorant about; my prior knowledge was that it was a plot device in a film to explain sudden death.

I don't really know if I should be a part of this community, but I have found it incredibly educational and could not have imagined how ignorant I was about the strife of those who survive brain injuries.

The only question I wanted to ask was if anyone else had PKD and an aneurysm and how did either condition manifest?

Thank you.

[moo196]

Hi,

I think there may be a more relevant section of health unlocked for you.

Try searching for kidney disease/issues perhaps?

Good luck !☺

[suemoff]

I have a friend who has PKD, she has had a kidney transplant, but no aneurysms.

Sue

[malalatete]

I agree that you are probably better off asking the PKD community for that to be helpful. If indeed it would be at all.

A thought on perspective for you to do with aa you wish - you appear to be reading up on something that is reliant on another thing which your dad might have, that you might then have a 50% chance of having inherited, and on to a 10% chance of this particular side effect which in itself has a not terribly helpful statistic attached for risk....

Even before you get that far you have already gone through so many ifs and buts....just can't help thinking your time might be better spent, rather than preparing for what is at best a very very distant possibility?

There is a distinct danger of knowing far too much about something that will most probably never happen... meanwhile in the next room, life goes on.

[Ctenophore in reply to malalatete]

I appreciate the replies I've gotten, and understand what you're saying. I'm not a hypochondriac, nor am I a constant worrier. I read up on biology; particularly how many systems that are interdependent can fail, and what the results and symptoms are (just 2 months ago I spotted my flatmate had mild clubbing of the fingers and he's now scheduled to get a chest xray) and sometimes I decide to change a habit or my lifestyle to avoid the possibility of a certain fate. I've read up on PKD and it's a "later life" thing that'll gradually get worse and lead to the requirement of a kidney transplant. For some reason I don't feel bothered about that happening if it does...(Not sure I'd deserve someone else's kidneys but that's another matter) But aneurysms on the other hand, that's something that does bother me. Anyone can get those, so the PKD link, though distant, ups the chances. I've already cut my salt intake and stopped eating the yolks from the 4 eggs I eat a day (to cut down on cholene and hence TMAO) to reduce the chances of high blood pressure and heart disease.

Life is going on on the next room, but I don't get up to much anyway. I just try to keep my mind sharp.

Thanks again for the reply. Sorry to bother you all.

[cat3]

Ctenophore, I think you're wise to consider the possible consequences of PKD if there's a genetic link (aneurism being a significant one).

You sound fatalistic and prepared for either eventuality, and I applaud you for doing your homework. I hope you'll glean a lot of information from Headway............but never actually need it ! 😳