Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
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.
My son is nervous about his wife having a baby and possibly having a child that will have PKD. I had 3 children and never knew about it. My son so far is the only one that knows he has it. My younger daughter is pregnant and doesn't know if she has it.
Since my husband is 67 with no problems from it, I'm hoping that will be the case with my son too.
Good luck!
I also found that almost completely eliminating sodium from my diet, combined with exercise, kept my blood pressure under control for years. Many find the strict sodium regime too much to tolerate, but I'm completely used to it now. It may at least help you.
I've read that Methyldopa, amongst other drugs, is used to control hypertension during pregnancy. I wonder whether it might be work seeing an Obstetrician to discuss how your health would be managed during a pregnancy. Along with the cardiologist and nephrologist, they might be able to come up with a plan that actually works.
As for kidney damage associated with renal hypertension, the picture is a little complicated. PKD can cause high BP early in the disease, before kidney function is affected. In addition, high BP can cause kidney damage, so it's important to control it. Mine has been well controlled with Losartan until recently, when I started experiencing BP dips! The investigations begin.......
Good luck,
Chewitt.
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I tried the low sodium thing (1200 mg/day) when I was first diagnosed with hypertension- no change. The lisinopril worked like a god send but I can't take it during pregnancy.
I tried methaldopa- got to the highest dose and my bp stayed around 170/105. We've been trying new meds, in different doses and combinations ever since. It's so frustrating because all of the information online says PKD doesn't tend to interfere with pregnancy, and I can't even consider it right now. I'm so tired of playing musical medications and crossing my fingers the side effects aren't horrendous (9/10 they are).