Jul
11
Drinking Water and Polycystic Kidney Disease (PKD)
Posted by Kidney Experts Comments (24)
Drinking Water and Polycystic Kidney Disease (PKD) with Ronald D Perrone, MD - Professor of Medicine at Tufts Medical Center; Learn more at http://PKDcure.org.
Categories: Kidneys
I’m 25 with PKD, it scares me that I’m so young with this disease. I discussed with my doctor today that I should be drinking more water. PKD is depressing:-(
sorry to hear. I have PKD as well and found out when i was 29. I have pain with it sometimes. I also have heart disease. I was born with both heart and kidney disease. I am 32 yr old female. Your not alone.
I found out I had it around the same age (25) and my kidneys didn’t fail until the end of 2008 (45). I hope that helps.
, are you ok now? did you have a kidney transplant? I’m terrified that my kidneys will fail in my forties or fifties, I’d love to learn more from you about this. I tend to just try to ignore it for the time being. I take medication for my blood pressure.
I’m great. It took about 15 months to fully recover from my transplant. Now it’s time to get back to work. I ignored it for a decade after I found out. Keep that BP down as low as you can, but make sure to have a life. Make sure you have a nephrologist you trust, make sure s/he approves of any medication change. Field the idea with family members to get tested with the time comes. It is easier for them way ahead of time; less scary. Good luck.
I got diagnosed two years ago…. u guys are not alone .
this video was helpful. I was diagnosed a yr ago with pkd and it has changed my life alot. My dad is in stage 5 kidney failure due to the disease and just recently my brother was told he also has it. Im 26 and my brother is only 22.
I am surprised to know from the comments here that so many people in their early 20s have found themselves having PKD. Normally, PKD can be detected after the age of 30.
Drinking water is good. Avoid sodium, too, i.e. the sidium chloride in salt, the sodium bicarbonate (baking powder) in bread.
My father has this. It’s terrible. :/
This kidney disease is heriditory. If a father or mother has this disease, the chance of passing it to his/her child is 50%.
This is a bad disease i have it and most of my family on my others side has it (mom aunts uncle) best thing to do is to just avoid salt excersise and avoid salt.
I was diagnosed with PKD a week and a half ago. I’m 17 years old.
Im 18 years old now and I was 16 years old wenn they diagnosed it.
you’re not allone
i just got diagnosed today and it is a shock . I didn’t know it even existed until my brother was diagnosed with it recently. i`m 43 with two kids and i hope that i have not given it to them. good luck to you all xx
I was diagnosed 15 years ago, in mid life. I had no idea it ran in my family. Usually this is a disease that does not cause problems until middle age. My best recommendation is to NOT be diagnosed and merely control your blood pressure by having it checked regularly. Being diagnosed affects your ability to get insurance. Eat healthy, cut back on protein, drink plenty of water, and live a healthy life. Enjoy what you have right this moment. It’s NOT a death sentence!
It sounds way more intimidating than it actually is. I have been through renal failure, I have been on dialysis, and I have had a transplant. Dialysis and transplant are simply treatments for kidney failure but they both work WELL. You can live a pretty normal life. I even worked while I was on dialysis. Do the best you can. Get counseling if you need it. Be optimistic. Look around you. So many people are worse off than you are.
I was diagnosed at 16… I am now 26… It hasn’t run my life at all… The best advice I can give any one is to watch your diet and fluid intake… If I start drinking cokes and coffees I feel like crap and almost always get a kidney stone if I drink them for long amounts of time… I am still young but I don’t think this thing will ever take hold of my life.. Kkorland you have a great testimony to the life we live with this.. Still gotta live!!
I was diagnosed at 16 and am now 33. I got lucky and got a transplant when I was 21. Unfortunately my transplanted kidney is starting to fail and will have to get another transplant in a few years.
i was diagnosed at 18 my senior year talk about scary and then on top of that my mother and little brother were diagnosed at the same time…..my ex step dad use to tell us we were dying slowly talk about a doosh but he’s gone now…..i just passed my first stone it hurt so bad i passed out the first day of school….now that i am better I’m drinking more water and trying i said trying to watch my salt in take i just love mexican food though
I have learned more about my disease from these videos than I have from my own doctor. Thank you to the PKD foundation and to Dr. Perrone for doing this!
I was diagnosed in 2010 at the age of 35. Very painful and surgery is useless because the cyst grow right back after being removed. Riding my bicycle 4 miles a day to help control my blood pressure and *sigh* taking pain medication to help with the pain. Like 1981jsk said, I learned more from these videos then I did from my primary doctor. Keep up the great work Dr. Perrone and people out there watching, please donate to help find a cure for this very painful disease.
I tried the whole large fluid intake and all it landed me was in the toilet ever five minutes. I wish I was joking.
I attempted to follow this recommendation and ended up in the hospital for 24 hours with depleted potassium and sodium. This was linked to both the PKD and the blood pressure medicine I was taking that included a diuretic. As a result of this event, I am only to drink water when thirsty, am taking prescription potassium, and have had my blood pressure diuretic decreased to one-half of what it was before the trip to ER and hospital. My symptoms included nausea, light-headedness, and headache.
My 27 year old son was just diagnosed with this. He is constantly in pain . His doctor is suggesting he have some of the cysts drained. Does this help?