The only thing you can do that may help with cyst growth is to avoid caffeine. It is thought that caffeine may accelerate cyst growth. Other than that there is not much you can do.

There is a new medication available in Canada by the name of Jinarc(Tolvaptan) that is being prescribed to hopefully slow down cyst growth. It was just approved this spring. I believe it is still in trials in America.

Jinarc makes you very thirsty so you drink a lot of water while on it. My nephrologist believes that drinking up to 2 litres of water a day while on the medication may be part of what helps. So if you wanted to try increasing your water intake you could. Of course if you have low function already then you will want to check with your doctor first. There are fluid restrictions as you go into kidney failure.

Hi lyonsmilk1,

Welcome to the group. This is a good place to ask questions and learn about PKD and its effects.

In PKD 1, 50% of sufferers go on to experience renal failure. Thus, 50% will go through life without requiring transplant or dialysis. In PKD 2 (15% of those with PKD), symptoms tend to be milder throughout life.

For most people with liver involvement, no treatment is ever needed. I am one of the very few with a massive polycystic liver, which causes me problems.

There are a few things you can do to help slow the progression if the disease. Keeping blood pressure low is important, as high BP can lead to kidney damage. You should also aim to drink plenty of water, keep sodium intake low, avoid alcohol and avoid caffeine. You should also not take NSAIDs such as Ibuprofen and aspirin, as these can be toxic to the kidneys. Your vegan diet may have helped you to keep your kidneys healthy longer than might otherwise have been the case.

As Kelley says, there is a drug newly available to some. In the UK it's just been licensed fort those who are at stage 2-3 with rapidly declining function.

Do you know your kidney function? When you have blood tests, we can help you to understand the results.

Let us know how things are going.

I add my welcome. Check out https://pkdcure.org, it's a good place to start on your learning journey. The folks on this site have decades of experience and I have often turned here when I don't get enough info from my doctor (he's only human). Your plant based diet is great for kidneys. You didn't mention how old you are. Age, onset of symptoms and progression of disease are sometimes related. As Chewitt said, we all have a 50/50 chance of advancing to renal failure - if the proverbial truck doesn't hit first!

Thanks for the input.
I'm 51 and my kidney function is at 57%. My liver is working okay for now. It's good to know that about aspirin. So, what should I do if my stomach starts to hurt again?
Re: Jinarc, my doctor did mention it, but he says it's really expensive. It won't be covered by medical insurance here (I'm resident in Japan) for another 6 months.

Last week my stomach expanded and I had a stomachache. So I went to the emergency room, got a ct, and they made the PKD diagnosis. This week I'm doing the right things - no caffeine, no salt, loads of water flavored with apple vinegar or grape vinegar,, and the discomfort is mostly gone. But I still look like an 8-month pregnant man. If my abdomen is not inflamed, won't swelling go down, regardless of the cysts? Or am I stuck like this?:(

This is an old paper but much of the contents are still relevant. It is very informative about the progression of PKD. It mentions something that we have neglected suggesting - you may have had a cyst rupture. The article goes into some detail about cyst ruptures.
http://cjasn.asnjournals.org/content/1/1/148.full

This new site is so clunky! Hopefully this post will appear in the right place.

Lyonsmilk1, your kidney function is doing well at 57%. As the number of cysts increases, abdominal girth usually increases gradually, not suddenly as you describe. This makes me think that your rapid expansion is something else eg. gas, complicating the matter. The finding of the PKD on your scan is not disputed of course.

I have a huge abdomen from both kidney and liver cysts. It will never go down unless the offending organs are removed. It's the presence of cysts (fluid filled sacs) which causes the increase in size, not inflammation. The cysts don't come and go, though they may rupture. Your abdominal swelling will only go down if it is caused (at least in part) by something other than the cysts.

I am lyonsmik1 - I've been unable to log on to this site for a month, and today I made a new account.
Thank you all for your replies. I really appreciate the advice.

When the doctor gave me the diagnosis, he told me about Tolvaptan, and gave me some lifestyle and diet hints, and said that PKD increases the risk of stroke and heart problems. He said I had to have an MRI on my brain, and an ECG for my heart. Thankfully the results were all clear.

(Japanese health insurance covered most of it, but I still went home $150 poorer. I suppose I'll need to get checked again in a year or two!)

I have another question for you all. Can PKD be controlled with a disciplined, healthy lifestyle? The right diet, the right amount of exercise, lots of water, no stress? Given a choice between that and Tolvaptan, I would choose the former.

Hi Mike, good to hear from you. I would say that PKD progression can be slowed by following a healthy lifestyle such as you describe, but not stopped in it's tracks. I've always been careful with my diet and for the last ten years have taken care with all of the other factors involved, but I'm still now in a position of probably needing to start preparing for renal replacement therapy within the next 2 years. I'm 49. I do, of course, have the complicating factor of an enormous cystic liver, which is quite rare. Tolvaptan would have given me longer if I'd started it 10 years ago when diagnosed. If I'd known I had PKD sooner, I would also have made different lifestyle choices (avoided caffeine, hormones etc) which could have helped a great deal. That's one benefit of earlier diagnosis which I didn't have.