Been Away: Hello fellow PKD peoples, I... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Been Away

PaigeyPaigeForLife profile image

Hello fellow PKD peoples, I haven't been on here in a while, its been one thing after the other with me. It started with my kidneys then I was diagnosed with vertigo and now I have an appointment to see a Neurologist.

I saw my Nephrologist end of last month, we discussed me taking the meds Tolvaptan because I have bad bouts of me so tired I could hardly do anything. I am waiting to hear what my function is the last check I had just entered stage 3.

All my blood work came back good and all that i have to do is schedule to have two more cyst drained on my right side.

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PaigeyPaigeForLife
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MrsLL profile image
MrsLL

Hi - I’ve had PKD lying dormant for around 13 years or so and was discharged by consultant back in 2006 - I’ve recently been referred to specialist again after starting meds for high BP and seeing through bloods kidney function wasn’t as good as should be. I’m just about to start exploring what’s actually going on as no physical other physical symptoms but last nights first appointment with specialist said my right kidney was large - likely with cysts so will be going off for a scan in the coming weeks. But I was interested to see your point about cysts being drained - is that a normal procedure? Keen to understand what everyone else is going through as I re start my own PKD journey

PaigeyPaigeForLife profile image
PaigeyPaigeForLife in reply toMrsLL

Thats PKD it can creep up on you, the procedure is call Interventional Radiology, ask your Nephrologist about the procedure. Mines was done in Johns Hopkins in Baltimore Maryland. I've had cysts drained two on my left and three on my right.

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