Hi All! New to the group, I was diagnosed with AKPKD about a year back, my kidney function is pretty normal currently. Hoping to keep it that way for as long as possible! I met with a new doctor today who wants me to start BP medication even though my bp is in the normal range. He also adviced me to start Tolvaptan, I'm a little reluctant since it's still in trial. Just wondering if anyone is doing it and also if anyone has tried marijuana oil to slow down the process. Thanks for sharing!
I'm reaching out to hear what others experienced when they were first diagnosed. I have been having problems with episodic hypertension for a few years now. My bp is typically 80s/40s. During an episode, I get incredibly weak and bp shoots up to 130s/90s. All of my problems started with urine retention that led to self-cathing for a week. Finally, with enough complaining of right kidney pain my...
hi everyone, new to the group. I'm 30 years old and have known I had PKD for a long time. In the past five years I've had a kidney infection, multiple UTIs and one cyst infection that required hospitalization.about 7 days ago I had severe pain in my kidney and stomach regions that went away after two days. Then starting Sunday I noticed that my urine had blood in it. The color is a really light...
hello im 25 and we just recently found out my baby has PKD during my 23 weeks ultrasound with no amniotic fluid.Baby's heartbeat and movements are good. Me and my husband's sides doesnt have any history of PKD.Does anyone have the same experience? I am hoping and praying for any chances of survival.Any advice? or treatment to help my baby survive? Hoping someone could respond.Badly needing...
Anybody on antidepressants? Which one is okay for PKD pateints to use? Thanks!