who has pkd?

[catmore]

Good morning,

I found out about a year and a half ago that I have this, I havent told anyone since there is not anything you can do, don't want my daughter to know since it wont affect her till later on in life. I have type 2 so that is less severe so that is at least something. My gfr is greater than 60 and im 57. so that's good too. My doctor was pretty nonchalant about diet but i have been sticking to the top 15 kidney friendly foods and no red meat but only once in awhile. My doctor seems to think there is no way to slow down progression but i am of course still going to try.

what is everyone doing to make your life better, has anyone used cbd oil or probiotics? I keep telling myself that im going to have a good normal life but it still sucks.

Any feedback would be greatly appreciated!

[MAS_Nurse]

Hi catmore and welcome to this caring community. Have you seen a renal dietician for advice regarding diet? This may help you and your GP could make a referral. Also, you may find the following website helpful--

PKD Foundation;Polycystic Kidney Disease

https;//pdkcure.org/

There is an online community on their website. Are any other members able to help catmore, please?

Thank you and best wishes.

[Bunkin]

Hi, I have PKD. As far as I know I’m the only one that has it out of 4 children. Although I do have a cousin with it and my doctor says there are many walking around with it they just don’t know it. There’s a 50/50 chance your daughter could have it. I would tell her as it might influence if she has children or not. I wish someone had told me but I guess they just didn’t know. Sounds like you’re in a great place and doing the right things. I take many supplements, drink a lot of water, exercise. I have slowed it down so I know you can. I started a program by Duncan Capicchiano. It tells what supplements to take, what foods are good. It has really been a big help to me. Hope this helps you. Prayers for you, God can do anything😀

[catmore in reply to Bunkin]

Thank you so much for your reply helps a lot. I hear you about telling my daughter but what a burden to put on her but I’m still thinking about doing it .

I have alway believe in diet and exercise, that eating the right food can do anything. You said you have improved can you share how ? Is your GFR better and is there some thing special you recommend? Guess you did recommend Duncan and I will look into to that for sure. But if there is one big thing for you what would it be?

Thanks very much

[Bunkin in reply to catmore]

I haven’t improved from where I started which was GFR 12. Now at 8. But I have slowed it down. Every day not on dialysis is a blessing. The program by Duncan gave me the initial information to build on. I discovered Chitosan thru research of my own. I took it for awhile without any results til I decided to up my dosage. When I did that, it dropped my creatinine down which in turn raised my GFR up one point which in my case was fantastic news. You are in a very good place with your age and GFR being so high so I wouldn’t stress too much over it. Although I wish I had been more proactive sooner then I’d be in a better place now. As for diet, I try my best but sometimes I fall off the wagon! Getting through all of this has only been possible through prayer and my faith in God. Also, other than supplements I take apple cider vinegar. Hope this helps!

I totally understand about your daughter too. On one hand, I wish I had known, on the other, I am a worrier so that part of it has been really hard for me. I didn’t have children and now I’m glad I didn’t because I sure wouldn’t want to pass it down. PKD is such a strange disease. I always wonder how I got it and my brothers and sister didnt

[catmore in reply to Bunkin]

Thanks yeah we all fall off the wagon we have to live our life too. That is good news one point is one point. I appreciate your words about me being a good place and not too stress out sure needed to hear that. Thanks prayers for you too

[Bunkin in reply to catmore]

😀

[lowraind]

Catmore,

As far as I am concerned, any doctor who "seems to think there is no way to slow down progression" is full of it! So many of us have done it that I think the medical community needs to catch up with us!

From kidney.org/atoz/content/pol... "Studies also suggest that some treatments may slow the rate of kidney disease in PKD, but further research is needed before these treatments can be used in patients. In the meantime, many supportive treatments can be done to control symptoms, help slow the growth of cysts, and help prevent or slow down the loss of kidney function in people with PKD. These include:

careful control of blood pressure

prompt treatment with antibiotics of a bladder or kidney infection

lots of fluid when blood in the urine is first noted

medication to control pain (talk to your doctor about which over-the-counter medicines are safe to take if you have kidney disease)

a healthy lifestyle with regard to smoking cessation, exercise, weight control and reduced salt intake

drinking lots of plain water throughout the day

avoiding caffeine in all beverages

In April 2018, the FDA approved a new drug called tolvaptan for the treatment of autosomal dominant polycystic kidney disease (ADPKD). The drug can be used to help slow kidney function decline in adults at risk for this type of PKD. You can speak with a healthcare professional for more information about this treatment and if it’s right for you."

[catmore in reply to lowraind]

Thanks for that info. So much to take in I feel so much better after a workout that I hope I can always do that. If you could share about your GFR and what’s working best for you that would be great. Some days I do feel awesome like it’s not so bad and then today I can really feel the pressure and it does make a difference what pants I wear and so on.

Thanks for responding

[lowraind in reply to catmore]

After I was diagnosed I did much research and in the process found this site, which I have found to be very helpful. I also have used Mathea Ford's books:

--Living with Chronic Kidney Disease--Pre-Dialysis, and

--Create Your Own Kidney Diet Plan.

I know that the numbers can go up and down, but what encourages me is that as a result of reading the 2nd book, I have been religious about diet and trying hard in drinking water. I track every meal:

Date/ Meal /Food Eaten/ Sodium/ Potassium/ Phosphorus/ Protein/ Carbs/ Calories

and then I track the totals for the day. This all makes me feel that I am in control of what is happening, and it appears that is it working.

Regarding exercise, I have discovered chair yoga (many you tube videos available) and then, Tai Chi. I find that through Tai Chi, my arms are much stronger and I can do the chair yoga more easily. They have been helpful to me.

On this site, look for Mr. Kidney's posts. His words have helped me much.

[catmore in reply to lowraind]

Thanks for the book recommendations , and it is encouraging to know your number can go up not just down . Very helpful thank you