PKD diagnosis + aortic dissection - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD
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PKD diagnosis + aortic dissection

evelyn000
evelyn000

Hello,

My partner (33) underwent emergency surgery following an aortic dissection. The operation was very long and very complicated but, after 6 weeks in hospital, he got home and is recovering slowly.

As a result of the numerous scans carried out, the doctors also discovered he has PKD.

We are waiting on an appointment with a specialist to find out more information as we do not know how developed it is, if it is genetic etc. He has no symptoms and before the operation was a normal fit and healthy 33 year old.

Has anyone any experience with aortic dissection and PKD as I know an aneurysm of the brain/aorta is a linked complication? Any advice would be welcome. Given his age and what he has just been through, these complications are worrying.

Is it reassuring that he has no symptoms nor does any member of his family?

3 Replies
oldestnewest

Hi Evelyn sorry to hear the news of your partner. I was diagnosed with pkd and pld age 31 my brother was also diagnosed with the condition. I underwent a mri and they found 4 aneurysms on my brain, i had 2 treated that year, at age 34 1 ruptured. Your specialist will be able to give you more answers and advice. Xx

I am sorry to hear about your troubles. But thank goodness your partner does now know about the PKD, and will be monitored carefully for aneurysms.

Yes, it is good that he has no worrying symptoms. And hopefully he will be eligible for the new medication, tolvaptan, that can slow the progress of PKD.

About 1 in 10 of us with PKD had no known family history of the disease when we were diagnosed, although sometimes it turns out later that kidney disease does run in the family. For people like that (including me) the online groups are a very valuable resource of people to talk to who are living with or have lived with the same problems.

I suggest your partner, and you if you like, joins the Charity's own group:

facebook.com/groups/pkdchar...

I am so sorry to here, i hope he gets better and you get all the information you need moving forward.

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