New to the group
Hello everyone. I've been living with PKD for a long time. I was diagnosed as a pre teen and remained symptomless until my mid twenties. I'm nearing my mid thirties now and still in stage 1 but the size of my cysts are so debilitating. They just keep getting bigger no matter what I do. It's hard to move, period. :/ Because of my kidney function being so excellent I am just advised by my doctors to keep doing what I'm doing: eating as healthy as I can, sticking with the herbal remedies I use along with my medication (lisinopril), and not pushing myself to go beyond my limitations. I also have intractible epilepsy but my seizures have decreased drastically (thankfully!) over the years. There are moments when I just can't take the constant pain, discomfort, nausea, etc. that comes with PKD and that's when I reach out for support. I'm blessed to have a wonderful husband who takes care of me without complaint, is my best friend, and the greatest person I know. He encouraged me to seek others with PKD since my list of friends has dwindled so much over the years. Many don't understand and I feel like those who have stuck around may be be doing so out of guilt. I know everyone who lives with this can relate to how I feel. There are days I feel like an alien, or like a carrier of aliens since my cysts are weird little foreign sacs, walking around in a world I don't belong in because of my illnesses and limitations. I have trouble reminding myself that's not the truth sometimes, even though I like maintaining a positive attitude as best I can. I'm looking forward to connecting with you all. Thanks for reading.
Hello everyone! I'm new here and don't know exactly how these posts work, but I'm here to reach out for advice...I do not have PKD but my boyfriend was diagnosed months ago with "the worst possible case" of this disease...he's been sick for well over a year before he was diagnosed. for all of you who have it..I'm sure you can all sympathize with him. He's 29 years old. His father, aunt, and uncle...
Hi all,I wrote here about 6 months ago...i was very anxious and scared , diagnosed with pkd accidently (no symptoms)... my father was a very complicated case , died 2 years ago in 3rd transplant surgery(!). He had very big kidneys and very high blood pressure from young age.I feel better now mentally and Im optimistic.I'm 28.5 recently did an mri , my right kidney looks better than the left...
Has anyone tried supplements like L-argenine, NAC or CoQ10? I know they all help bp but not sure of thier impact on PKD?
Hi there , I am 29 years old who inherited this disease from my dads' side of the family. Just recently I visited the neuro for a twitch I was having, and although he ruled the twitch out as a minor event, He asked me if I have ever screened myself for an aneurysm?Well I have not, no-one in my family has a history and my dad is 58 years old, with one transplant. Now that he has told me about...