I was diagnosed with ADPKD/PLD 28 years ago and 28 years of age, at the time there wasn't much education about dieting or the disease in general. As a result, I developed my own "clinical trial" to see how I could better manage the ever expanding mid-section of my body. Fast-forward to today, I went from 256 lbs. to 175 lbs. and have remained steady. This is what I have done: 1) I limited red meat to literally once a month if I feel like eating something otherwise I won't even eat it. 2) I eat chicken, some sliced turkey for sandwiches, seafood and plant based proteins. 3) I drink copious amount of water, you will never see me without a bottle of water in hand. 4) I eat breakfast, snacks during the day and lunch at around 2:00 pm - 3:00 pm. I do not eat anything at all past 6:00 pm. My snacks consist of pop-corn, nuts, and some fruits. 5) I exercise five days a week leaving two for resting. Results: My weight has remained steady at 175 lbs. and sometimes less, my waist size went from 38 to 31-32 and I feel as healthy and full of energy as I did when I was in my teens. I have had no kidney (cyst) pain or bleeding in over 10 years and no UTI's or complications. I should mention that I had a successful cadaveric kidney transplant 16 1/2 years ago and my lab work (done two weeks ago) all came out within normal limits. And kidney function (creatinine) is still at 1.2 same as it was after the transplant and GFR at >70. My take is that changing my eating menu (I don't call it diet) along with exercise and being my own advocate has played a major role in my health today. Thank you to the entire team a the PKD foundation for this very informative session.
Your nutrition will depend on where you are with your health, what type of kidney disease (PKD and/or PLD/Others), type of transplant or if you are on dialysis or not. In addition, you must take in consideration any other comorbidities if any. I do not believe on any diets because I have to adjust to my own situation, I stated the things I eat and those I stay away from than can aggravate my Polycystic kidneys or damage my transplant. In summary, I stay away from animal protein as much as possible and eat more plant based meals although I am not a vegetarian or vegan. I have also made exercise (movement) a big part of my life, not a single day goes by where I do not do some type of exercise whether is walking, calisthenics, cycling, hiking, gardening and such. I do stay away from impact sports for fear of affecting my transplanted kidney.
It's great to see the ketogenic diet picking up steam even with more conservative organizations. We've been seeing such great results with our version for PKD patients over the years, no issues with cholesterol or stones - quite to the contrary - so thank you for including it in this video.
For me when in ketosis for extended periods of time, I have to increase my salt intake to keep my blood pressure high enough to prevent dizziness. If not in ketosis then limiting salt is a must. It’s easier and feels better to just stay on keto diet. It improved my EGFR. For me my abdomen looked slim while in ketosis. When I stopped keto I can tell my kidney enlarged because, it’s difficult to sleep on a large lump. I have one kidney ADPKD. I lost the other to multi-cystic at 6 weeks old. ( those details are just what I was told by my parents). I have never had potassium issues. And it may be that keto is almost no salt and that may be why I have to add it when on keto. I was on keto for 6 years and fell out after a Cipro Injury and am ack on keto. Life is more than food. On keto and never had high cholesterol, LDL etc. I exercise one hour every morning. BMI is 20.
I was diagnosed last week with PKD I just had an ultrasound and the radiologist saw that one kidney was covered in cysts and had stopped function. The symptoms I had were I was fatigued and bloated. My skin had been itching for years but this was put down to allergies by my GP. I wasn't given any advise just told to wait for a specialist which could take months 😢
What exactly is a safe Keto diet that's ADPKD specific? Just asking, because I'd always thought bananas were "good for me," however, people like myself with ADPKD shouldn't eat bananas, and a lot of other things that are good for most people, but again not for ADPKD patients. Please give more information regarding what a good Keto diet consists of. Thanks a million!!!
Bananas are definitely not keto. Keto is very low carb 20% of your intake. Keto think grilled chicken , advocacies, olives etc. it is easier if you calculate your macros and focus on clean meat, veggies and fats. Walk, walk, walk or resistance exercises. I started with walking, the Body Fit by Amy videos I could do at home before work.
I was diagnosed with ADPKD/PLD 28 years ago and 28 years of age, at the time there wasn't much education about dieting or the disease in general. As a result, I developed my own "clinical trial" to see how I could better manage the ever expanding mid-section of my body. Fast-forward to today, I went from 256 lbs. to 175 lbs. and have remained steady. This is what I have done: 1) I limited red meat to literally once a month if I feel like eating something otherwise I won't even eat it. 2) I eat chicken, some sliced turkey for sandwiches, seafood and plant based proteins. 3) I drink copious amount of water, you will never see me without a bottle of water in hand. 4) I eat breakfast, snacks during the day and lunch at around 2:00 pm - 3:00 pm. I do not eat anything at all past 6:00 pm. My snacks consist of pop-corn, nuts, and some fruits. 5) I exercise five days a week leaving two for resting. Results: My weight has remained steady at 175 lbs. and sometimes less, my waist size went from 38 to 31-32 and I feel as healthy and full of energy as I did when I was in my teens. I have had no kidney (cyst) pain or bleeding in over 10 years and no UTI's or complications. I should mention that I had a successful cadaveric kidney transplant 16 1/2 years ago and my lab work (done two weeks ago) all came out within normal limits. And kidney function (creatinine) is still at 1.2 same as it was after the transplant and GFR at >70. My take is that changing my eating menu (I don't call it diet) along with exercise and being my own advocate has played a major role in my health today. Thank you to the entire team a the PKD foundation for this very informative session.
Hello pls help me
What do you need help with?
@@rvnut1133 what diet you follow?
@@rvnut1133 i also have pkd
Your nutrition will depend on where you are with your health, what type of kidney disease (PKD and/or PLD/Others), type of transplant or if you are on dialysis or not. In addition, you must take in consideration any other comorbidities if any. I do not believe on any diets because I have to adjust to my own situation, I stated the things I eat and those I stay away from than can aggravate my Polycystic kidneys or damage my transplant. In summary, I stay away from animal protein as much as possible and eat more plant based meals although I am not a vegetarian or vegan. I have also made exercise (movement) a big part of my life, not a single day goes by where I do not do some type of exercise whether is walking, calisthenics, cycling, hiking, gardening and such. I do stay away from impact sports for fear of affecting my transplanted kidney.
Thank you for sharing the research. Next time please make an audio check before recording.
It's great to see the ketogenic diet picking up steam even with more conservative organizations. We've been seeing such great results with our version for PKD patients over the years, no issues with cholesterol or stones - quite to the contrary - so thank you for including it in this video.
For me when in ketosis for extended periods of time, I have to increase my salt intake to keep my blood pressure high enough to prevent dizziness. If not in ketosis then limiting salt is a must. It’s easier and feels better to just stay on keto diet. It improved my EGFR. For me my abdomen looked slim while in ketosis. When I stopped keto I can tell my kidney enlarged because, it’s difficult to sleep on a large lump. I have one kidney ADPKD. I lost the other to multi-cystic at 6 weeks old. ( those details are just what I was told by my parents). I have never had potassium issues. And it may be that keto is almost no salt and that may be why I have to add it when on keto. I was on keto for 6 years and fell out after a Cipro Injury and am ack on keto. Life is more than food. On keto and never had high cholesterol, LDL etc. I exercise one hour every morning. BMI is 20.
Hello My Dad egfr 24.8 and creatinine 2.9
Is there anyway to make improvements
I was diagnosed last week with PKD I just had an ultrasound and the radiologist saw that one kidney was covered in cysts and had stopped function. The symptoms I had were I was fatigued and bloated. My skin had been itching for years but this was put down to allergies by my GP. I wasn't given any advise just told to wait for a specialist which could take months 😢
What exactly is a safe Keto diet that's ADPKD specific? Just asking, because I'd always thought bananas were "good for me," however, people like myself with ADPKD shouldn't eat bananas, and a lot of other things that are good for most people, but again not for ADPKD patients. Please give more information regarding what a good Keto diet consists of. Thanks a million!!!
Bananas are definitely not keto. Keto is very low carb 20% of your intake. Keto think grilled chicken , advocacies, olives etc. it is easier if you calculate your macros and focus on clean meat, veggies and fats. Walk, walk, walk or resistance exercises. I started with walking, the Body Fit by Amy videos I could do at home before work.
Good info. Thank you all. Very helpful guidence. I also have polycystic liver disease as well.