I was diagnosed with PKD about 3 years ago. It was found on a bit of a fluke because my blood pressure jumped pretty quickly (normal in July, then dangerously high in January) and so my doctor ordered tests to find the cause. She had a cat scan done thinking it was an adrenal issue and found the cysts in my kidneys.
I initially took Lisinopril (40 mg/ day) which kept my blood pressure in check. My husband and I would like to start our family though and that medication can not be taken in pregnancy. We have been trying for two years to find a safe medication that can control my blood pressure and have yet to find one that works. I am exhausted, tired of doctor visits, and just crushed because two doctors now have suggested I start considering adoption because pregnancy may not be safe for me.
I try not to over-research, because I am not a doctor and I don't want to make judgements that I am not trained for. However, I have read quite a bit about renal hypertension lately. Has anyone been diagnosed with renal hypertension? My kidney function is still 99%, but I understand that renal hypertension doesn't necessarily affect kidney function in the beginning. My primary care doctor does not seem well versed in PKD, and my nephrologist rarely deals with women who could be pregnant, so neither of them have been much help. I just started seeing a cardiologist who seems to have an understanding of PKD. None of them has ever done an ultrasound of my kidneys. The only imaging I have had done is that initial cat scan that found the cysts in the first place and the possibility of renal hypertension has not come up. However, some medications work for short periods (and hour or two) before my BP hikes back up to it's typical 170/110 and that seems to be a common sign of renal hypertension.
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...