I am new to this site which I came across because I am searching for people in the know about PKD.
My cysts were first picked up when I had a pelvic ultrasound at age 18, I am now 33.
I have been having some funny health issues the past couple of months and after seeing the doctor today she suggested my kidney function may have changed. I have a pathology form to have bloods done soon.
Oddly, one of my biggest issues seems to be low blood pressure, which I understand is opposite to the usual issue of high blood pressure associated with PKD. My BP today at the drs was 116/65 which is not unusual for me, I also have a fairly low HR, today was 65 however it is not unusual for it to get down to 50 when I'm in bed.
I have also been having what feels like sudden drops in BP which can occur at any time, but usually when I'm standing or -scarily- driving long distances.
I have also been feeling very mentally fuzzy and spaced out, and my HR can sky rocket at any time along with fluttering heart sensations.
I have been drinking lots of water lately as it has been very hot and I'm trying to reduce the load on my kidneys (and bring my BP up, which is obviously not working), however the dr thought my electolyte balance might be out because of the extra water and the fact that I avoid salts, again to protect my kidneys. This is one of the tests I will be having. All other tests to date have no shown any deterioration in kidney function except a slightly low eGFR (last test was 75 I think from memory).
So obviously the bloods will give me some answers but in the mean time I'm wondering if anyone else with PKD have had odd symptoms like this, and if so, what do you do about it?