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.
Hi I'm 42 years old and have pkd. I got diagnosed 3 years ago and recently my GFR fluctuates between 13-20%. Does anyone else have this problem?? It dropped and they had me get a fistula placed for dialysis. Now it's back to 19% and my Dr is questioning my symptoms. I am exhausted and have vomiting/nausea. Some days seems a little better than others. I really have no energy for nothing. Now I'm...
Hi everyone.. Do any of you have muscle cramping as you approach(ed) Stage 5? I'm probably at around 13-14 GFR now, and am starting to get some recurring cramping - especially feet and ankle areas. It's not chronic, but starting to be more than just a fluke cramp here or there I think. Just wondering if this is something that is common.Thanks,Steve
hi, I am 16 and was diagnosed with PKD 3 years ago. I've always had mixed feelings about my diagnosis. On the one hand, i have seen what several of my family members have had to go through with dialysis and transplants. However it doesn't feel real because I have no symptoms. I had an ultrasound recently, and seeing the cysts on screen was hard to experience. I joined this group because I wanted...
Hello all. I'm looking to connect with others for support in helping my husband manage issues around PKD and deteriorating health. We have been lucky to be rather symptom free, but more recently things have started to decline. He found that his function is down to 20% and we are looking at likely needing dialysis or transplant in the next year. Since this time he has felt more fatigued and...