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since it is said that there is no cure for this disease,also my father died of this disease also other members of my das fly are suffering with kidney problem

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Recently diagnoised, had cysts show when I came down first with uti's about six years ago not bothersome but did have back-side pain. I have an uncle on my dad's side dx with same recently PKD so I went back and had the tests done again and it came back onclusive with PKD now.Some lab work is borderline so more tests to follow. My two sons age 9 and 12 are going for ultrsounds to see where things are at for them.

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Always interested to hear from others. Interested in how they are managing their care, if they are on medications and special diets.

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my mother and at least six of her eight siblings had PKD. Mom apparently died of a ruptured cerebral aneurysm when I was twelve years old. My sister has had her cadaver transplant for about one year and seems to be doing fairly well. I'm taking antihypert nsives now, but when I reach the point of ESRD, I will terminate all treatment; I can't see the point of devoting every thought, word, and deed every moment of every day entirely to surviving to do the same thing for another day.

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Does anyone have any information on Dr. Gabe Mirkin's doxycycline treatment for PKD?

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I've heard so much about people with PKD, either receiving a kidney transplant, going on dialysis, or dying from complications of the disease. But I would like some information about the statistics of PKD. I was diagnosed 6 years ago, but have not felt an effects of PKD yet. I know that the kidneys usually start to react in your middle years (40's-50's) at least that's the average. I have also hear that a small percentage of people have PKD and never suffer from Kidney failure. One man I heard about wasn't diagnosed until he was 80! He had cysts all over his kidneys and wasn't adversly effected! How common is this occurence. What are the statistics or how common is it for people to have PKD and NOT have their kidneys fail? I would like to remain very posit ve, and I think this type of info. could help...Thanks!

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Long family history of PKD. My grandmother died with it when dialysis had a waiting list. I was the first of our immediate family to go on dialysis at 40 yrs. of age. My daughter was next at 19 yrs. of age. My mother went on when she was 60 yrs. old. am now 49 and have been on hemo, peritoneal, and had 2 transplants. The last being a great success! My daughter has had a cyst drained at KU Medical Center because of pain, has had one kidney removed preparing for transplant and has a successful transp ant for 1 year as of Aug. 10, 1999! My sister (age 51) has PKD without much failure (also has MS), my younger sister has PKD (age 40) close to getting on the list for transplant. Dr. Grantham at KU Med Center and co-founder of PKD Research Foundation has been the family doctor. I have another daughter that has not had any symptoms and has not been tested since she was 3 yrs. old (neg.) Dr. Grantham explained hereditary factor like a flip of a coin (50/50). You may flip it 5 times and come out with head 5 times, or you may flip and get 2 heads, 3 tails, but the math equals out 50/50 overall. I hope that I had a heads and tails flip, so that one daughter can plan her future without PKD.

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I inherited autosomal dominant polycystic kidney disease and have been on hemodialysis for a year and a half. With a doctorate in physiology and experience teaching biology, I try to keep up to date on recent developments in treatment, both conventional and complementary. I am on a list for a kidney transplant

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father and brother both had pkd. father died at 60 never experienced esrd. brother died 56 - 6 years on dialysis. i was on dialysis at 45 but opted for transplant. doing great. my son and daughter both wanted to be my donor-son could not has pkd. da ghter ok but we did not match. we had dna testing done to double check that daughter is disease free. i got transplant from cadaver

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Just discovered that I inherited PKD. Just overcoming the initial shock. I will be happy to hear from anyone who can advice me diet.

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Im looking to talk to someone with the disease to see what there going through through and there families and be able to swap questions.

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Thanks for the information. I recently moved here to Ct. and can't find a Dr. who knows about PKD. I have had this since 1979. Keep up the great job informing others. Irene

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WOULD LIKE TO KNOW AT THE LENGTH IN YEARS BEFORE ONES KIDNEYS STARTS TO MALFUNCTION,AND HOW LONG DOES ONE HAVE TO WAIT FOR A KIDNEY TRANSPLANT.

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I HAVE FOUND THIS MESSAGE BOARD VERY INFORMATIVE AND TO LEARN THAT NONE OF US ARE ALONE.MY HUSBAND WAS TOLD IN 1986 THAT HE HAD PKD,WE HAD NEVER HEARD OF IT.HE CHOSE NOT TO WORRY ABOUT IT,BUT I WAS VERY CONCERNED.I SPENT A WHOLE DAY AT THE PUBLIC LIBIARY AND DID A LOT OF RESEARCH ON THIS DISEASE.I BECAME VERY WELL INFORMED AND NOW I AM ABLE TO ASK HIS DOCTORS QUESTIONS AND AM ABLE TO UNDERSTAND WHAT HE TELLS ME.

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I have PKD. Diagnosed 3 years back . presently taking meds for high bp. and zero salt . If i take even little salt i get swelling in my legs during day time, due to water retention in the body. Is there any body who have experienced the same. though it is difficult to eat zerosalt food , i am scary to take little. my bp is under control. I am worried about my diet, I am browsing through for more information on diet for apkds . I cant really judge which is low protine which is high. If any body know about this ,kindly let me know about diet control for people like me. thanks. seena

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I was the first one in my family to be diagnosed with PKD,during my first pregnancy at age 27. Since then both my father,who died last month while on dialysis,and my brother were diagnosed.I have been told by my doctors to stick my head in the sand. I can t seem to get much information. I'am scared and frustrated.

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My mom, my sister and me all suffer from PKD. I want to know more about it and provide any new information I know about PKD to the group.

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My mother was diagnosed with PKD about Five years ago, she has it on various organs as well as her Kidneys. She has hish blood pressure, dizzy spells and pain in her back. I am the only daughter and was checked out to see if I had the disease. The result as that I have got it too. Mine is not as bad as my mothers. It is difficult to find out anything about PKD in Great Britain, its good to know that there is a place you can go to talk and find answers.

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I was wondering if anyone had information for me. I had strep throat, which left me with kidney disease (not the kind for this site). Now, I get sick all the time (sore throat, headache, fever). My doctors don't think anything is wrong, but for a year now I've been getting sick every 2-6 weeks like clock work. Can anybody help me with this.

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I inherited my PKD from my Mom and she died from it without any chance to have a dialysis or kidney transplant. My cousin also died from PKD due to brain aneurysm and she did not have the chance to have dialysis and kidney transplant.My youngest brother was also diagnosed when he was 30 but he doesn't feel the same way I do. I don't have high blood pressure like he does. Mine is totally different. I get tired easily. I feel dizzy and palpitations. I used to be very active but now I am very scared to do any exercise although my doctor told me I can but avoid lifting and contact sports. I really need to get some information and I will be glad to receive any information or support.

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I believe that I inherited the disease from my father. My father was on dialysis when he died. To the best of my knowledge, he was not diagnosed with PKD. My cousin (on Dad's side )had PKD/so do his sons. Both of my children have PKD! My husband donated one of his kidneys to me in Jan 1997. His surgey was performed laproscopicly. Our surgery was performed at the Univ of Maryland. I have had no rejection.

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HAVING A FAMILY HISTORY OF PKD HAS BEEN HARD, BUT I'VE COME IN CONTACT WITH GREAT PEOPLE WHO SUPPORT ME AND THAT SEEMS TO HELP THE "MENTAL" ASPECT OF THIS DIEASE THAT KNOW CAN SEEM TO HELP WITH. THINK POSTIVE!!

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I don't have much to say. Only that I think somnething else could have been tried before putting me on dialysis.You know maybe some kind of medication or something. I've been on for 2 years and I still have good kidney function

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This sight has been a big help,my father dosen't like to talk about it, and it has helped to awnser all of my questions. Thank you .

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Information is really scarce.. I would like as much info as possibe, that is up to date. I am very thankful to find what I did on the web.