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PKD Charity for Autosomal Dominant PKD

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Uncertain Future

BROMAN profile image
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Hi, this is my first time here, I am 48 years old and I had an aneurysm on 2006; I survive all that. Now I suffer for PKD; I am scared, my mother died from that when she was 56 and later my brother at 39th, I am worried about my future. Can somebody tell me how to start or what is the process to follow for a kidney transplant. Thanks for your help.

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tillymint16 profile image
tillymint16

Hi Broman

I’m sorry to hear about your aneurysm But that you came through it is great news. This brain condition is a result of having PKD so you would have had the kidney condition first. My Mum also died of this at the same age which is strange. I too have PKD and brain aneurysms but I’m monitored closely in fact seeing a new brain consultant today. There are different strains of PKD and it can be managed very well with lifestyle and meds. It doesnt always have to end in a fatal results like we’ve both experienced.

Especially in your case keeping blood pressures monitored and taking meds to keep it the lowest possible I’d vital to keep and pressure off veins and arteries.

I wish you good luck and you’ll benefit from a good kidney consultant who can support and guide... don’t take too much notice from stories on the internet about these conditions

Regards Andrea

BROMAN profile image
BROMAN in reply totillymint16

Thank you very much, I am sorry about your mom! I pray God everyday for a cure. I have fate one day the medicine will be better.

Thanks Andre.

tillymint16 profile image
tillymint16

Hi Broman

Having PKD doesn’t always result in transplant. Your kidneys actually have to be bad enough to warrent going on a transplant list and to do that you need to be under a specialist and have regular blood test to gadge the decline of their function.

Can you tell me did you have an aneurysm rupture or did you have it dealt with before anything happened. I have an aneurysm that is monitored every year with MRI but I’m terrified of having treatment ... I know it sounds crazy but I just live in fear!

This is such a common disease but most people don’t know they have it also I carry genetic monifiers that slow the PKD down which I’ve inherited from my healthy Dads side of the family so it’s essential to have you particular strain of PKD investigates.

Regards Andrea

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