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.

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I've just found out I have PKD at age 56.I think I have had it for many years.I have had high BP for 30 years.I've been hospitalized 4 times in the past 5 years for high BP. Iknew I had cysts on my kidneys for about 5 years, but was told not to worry about them. Then I had an CT-scan on my lower back to check my 5-level fusion and they showed up. I saw a neph and he orderded bloodwork,urine and an MRI.It showed numerous cysts, and my GFR was 59.I also have blood in urine. I have terrible back pain but I always thought it was from surgery.I dont know what to expect because my neph seems to downplay. All he told me was my kidney function is ok for now,and there trying to lower my bp still.I was in the hosp. last month and they let me go home when they got my bp. down to 160-107.They added meds but it is still high,142-98.I am taking benicar40,lisinipril20,lasix and coreg. Any info would be appreciated about how fast it progresses or anything. Thanks



you were born with PKD, it doesn't just develop. the fact that you are now 56 and still have good kidney function is a good sign.
your high bp is NOT a good sign and you have to do all you can to get it under control.
two of the best things you can do are drink plenty of water and cut way back on salt. read labels, avoid processed and canned foods, ask for your food prepared without salt if eating out. that will help lower your bp and reduce any edema (swelling).
cutting back on caffeine is beneficial, avoid soda such as colas because they are high in caffeine, sugar and all kinds of bad things.
if you smoke, stop! alcohol should be reduced to one drink a day or less.
I don't know anything about your lifestyle but often people in their 50's receive a wake up call to eat right and exercise more. this may be yours.
as to how fast this will progress, that is anybody's guess but you should do all you can to stay healthy. that will be of great help to you.
oh, and welcome to a great support group.

My nepurologist explained to me that one of the reason for high blood pressure with PKD patients is caused when cysts create pockets of kidney tissue where blood flow is reduced. Your kidney responds by sending out a signal telling your body to increase the blood pressure to get a better blood flow to that kidney tissue.

There is a fairly new technic being used to combat uncontrollable blood pressure caused by kidneys and that is denervation. They laproscopically go in and sever the nerves that service your kidneys. The two beneficiary side effects are that the signal to increase your blood pressure can't get out and your blood pressure decreases and the second is that pain can be reduced often significantly.

Did I mention that it can be done laproscopically. :)

I am having it done to one kidney in a few weeks due to uncontrollable pain.

Hello - my sister is 43 and has kidney function of 67%. She has been advised that provided she continues with her BP meds which are controlling her blood pressure it is unlikely that she will reach end stage renal failure. That said kidney can steadily decline or suddenly drop by a few percent so it is impossible to determine how and if yours will decline. At your age your GFR sounds like a pretty good figure, but it's a terrible shame that this has not been diagnosed for you earlier. I maintain a good BP reading of about 110/75, however it has taken me a good while to get to this. This is the level that my nephrologist has been aiming for and you need to do the same. High BP is definitely a serious factor in declingin kidney function. I take 40 Lisinopril, 15 bisoporol, 5 amlodopine,20 furosemide. Good luck
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