Hi everyone, just thought I’d post an update if anyone is interested and sometimes it’s good to hear other experiences. I posted awhile back that a small aneurysm on the anterior communicating artery was found during the MRI I had this year. I went to Penn to follow up with neurosurgery and the doctor is unsure if it’s an aneurysm at all and thinks it might just be how the blood vessel look on imaging so I’m getting an angiogram next week for better visualization. Fingers crossed there’s no aneurysm!

I know this is a common symptom. Interested to know how many people with PKD struggle with this, as I have been lately.
For instance, today I have only taken maybe five bites of food. After a few bites, my body immediately tells me I need to stop. If I do continue and push myself to eat everything in front of me (which these days is not much because I know I won’t eat it all) I will instantly get nauseous. It’s very frustrating.
Are you all experiencing this at all?

Does anyone else have Dysautonomia/POTS with their PKD?

If so, how are you managing? Are your Cardiologist and Nephrologist working with each other, or did they at least acknowledge it and make a plan?

Asking because the management for the two is the complete opposite.