Hi Folks, Wondered if anyone had any dietary advice you could share. I was born with PKD and now at the age of 38 my efgr is 29.

[strant1974]

I have never been given any advice on what to eat or not to eat a part from cut bad on the salt in order to keep the BP down. I exercise regularly so maybe it is time to start thinking about what food I put into the engine as I have read that you can slow down this deteriation by diet and exercise alone. Any hints and tips would be most welcomed. Thanks in advance.

[Hidden]

Take a look at the link below and see what you think :

nhs.uk/news/2009/07July/Pag...

I am attaching a link to some information about PKD on the NKF website :

kidney.org.uk/Medical-Info/...

Ask for a referral to see a Dietician who can check your blood results.

The Helpline have a dietary pack and cookbook available to help if you need to cut back on potassium. Telephone [phone]

[strant1974 in reply to Hidden]

Brilliant, thanks so much I will check these links out.

[googie]

I have read about the sodium bicarbonate before, but please be careful, as I take that in capsule form in order to RAISE my bp, as mine is too low. I would ask before using it.

[HiveMind in reply to googie]

Hi Googie,

I have suffered with low BP for ages and I also take heart meds which really don't help. My BP is regularly 70ish or 80ish over 40ish or 50ish.

I have never heard of taking sodium bicarbonate to raise BP. How did you find this out, was it recommend by your doc?

[googie in reply to HiveMind]

Yes, my Renal Doctor put me on it. Sodium is salt and that raises your bp. I can't have more than I am taking though as it wouldnt be good for my heart.

[googie]

Also, avoid processed foods. Get ham from the deli rather than out of a packet, and cook from scratch if possible rather than ready meals. The less work your kidneys have to do to clean the blood the longer they will last Agree with the above, ask to be referred to a Renal Dietician.

[strant1974]

Thanks Googie, my BP was slightly high but I am on an AIIA to counter this and am now below target. I don't eat many processed foods due to the salt content. I'll make the call and ask for a referral. Thanks for taking the time to reply. Good luck.

[ROXE]

Hallo,

Here in London, where I live, nobody has told me anything about keeping a diet yet, even now that I am in stage 4, although they did advised me to lose some weight. I know that in my country, at least in Madrid where I come from, things are different and patients get a list with a recommendation guide about what to eat and what not to eat.

Anyway, I start talking around and I don’t write what I want to write about. This is the food that I can and can’t eat trying to avoid as long as possible going into dialysis or needing a transplant. This is the list I got from my hospital in spain before moving to London 3 years ago.

Good:

White bread, rice, pasta, corn, goat milk products, chicken, veal, lamb, fish in general except exceptions (100 gr a day of meet being able to exchange it for eggs, bearing in mind that 1 egg is the same as 50 gr of meet)

Asparagus, Aubergine, courgette, green beans, pumpkin, beet root, squash, onion, lettuce, broccoli, cucumber, cabbage, peppers and spinach (this last ones with a certain restriction)

Apple, pear, water melon, graves, strawberries, plums, apricots in conserve, pineapple in conserve, all jams and honey and sugar as well as olive oil.

Bad:

Bread and full grain products, soy products, Danish and industrial pastry. Chocolate

All cow products, seafood, oysters, clams, mussels, cold cuts, charcuterie, soda drinks, leeks, celery, mushrooms, chicory, dried beans, beet root, radish, olives, potatoes (specially fried or without previously being at least 30 minutes in water)

Banana, cherries, apricots, avocados, mango, Granada, grapefruit, dried fruit and orange.

I guess that as with everything there will be exceptions to the rule and there will be people telling this or that should or shouldn’t be in the list but I just decided to be extreme and eliminate from my diet anything that has high potassium because after all... if I really have to live without coca-cola or chocolate that I really love... the rest doesn’t really bother me anyway.

Another thing that I asked my doctor in my last visit was about meet since in spain they recomend a lees meet diet and she said for many years it was thought that avoiding meet would help but it has not been proven and the negative part of it is that avoiding meet is bad for your iron and anemia so is better to keep eating it for the nutrients.

I have to say that since I started my diet in April I have lost weight and my sgf has stayed put at 19% as my last report last week was still the same.

I am planing a transplant from my hubby who luckyly for me is compatible and my doctor went from thinking it would have to happend by januari 2013 to maybe by end 2013.

So, diet is very important.

I hope it helps,

Good luck!

Eva

[strant1974]

Hi Eva (lovely name - my daughter is called Eva!)

Thanks for taking the time to send your advice.

I love my cold cuts but needs must! Need to cut down on the sodas too but it will be worth it if I can put off the transplant/dialysis.

I wish you all the luck in the world with your transplant when that happens - thats true love right there!

Thanks again and let me know how things go.

G.

[vaw777]

Hi strant 1974 diet is very important. . low potassium and protein and no dairy except half a cup of milk daily. My doctor didn't know thing About diet I got in touch with the kidney dietician at our public hospital and she have me akidney diet sheet and my gfr is up to 33 so I'm really chuffed Cheers vaw777

[jesswecan]

Look into a Dr Walter Kempner and see his research on Kidney disease and how he was able to help 60 percent of his patients with the Rice Diet. I have not personally followed his diet, but I am following a Whole Plant based diet.