Comments:
I had a CT scan last week and my doctor indicates that I have cysts on my kidneys. He indicated with the cysts the kidneys are about twice the normal size. He indicated that my kidney function is fine and my blood pressure is normal. My father was diagnosed with PKD a few years ago. He is 83 years old. Any feedback is appreciated.

Comments:
I was diagnosed in 1992 at 50% function. I seem to be the first in my family to have PKD. My disease seems to be progressing way to fast, and I'm afraid of what may be ahead for me. I'm also very concerned that my children may get it. My husband may be able to donate one of his kidneys for transplant when the time comes, and I would be interested in hearing from anyone who's had a live donor transplant. Also, does anyone know if acupuncture can help? Can chiropractic back manipulation hurt the kidneys I would appreciate any information on low protein diets and soy in the diet. I welcome any information on anything that will preserve kidney function and delay dialysis or transplant. I will "talk" to anyone who wants to communicate about this disease May the cure be soon and available to all of us!!

Comments:

Comments:

Comments:
Have been on PD since August 1997. Had a fistula put in the right arm. In 1995 had a total kidney failure while overseas. To save the situation a catheter was put into the upper chest. Had three heamo dialysis treatments and the forth was aborted after two hours, as blood condition was declared OK. Every 6 weeks check-ups with bloodtests. Have to watch weight and Blood pressure and use the appropriate strength (glucose concentration) of fluid bags. This is her husband (her carer) writing.

Comments:
i was diagnosed 12-93, have done well since. my dad had it and died at 73 from an anuerysm. i am under the care of agood md and have very few symptoms.watch my protein intake, 62 GRAMS/KG. I am on benazepril ace inhibitor.b/p undercontrol now started 12-99 creatine is 1.2,protein in urine is 105/24hr period. i am doing well, phydically very active, participate in hiking , backpacking,mountainclimbing,international travel and outdoor photography. so far no pain; iam hoping not to go on dialysis and to live well into my 80's. currently i am 54.

Comments:

Comments:
i was born with infantile pkd. i grew up w/pkd, and had a healthy baby 2 yrs ago. i know a lot about pkd. seen by the u.v.a. medical staff and have been thru genetic counseling. always interested in research on pkd!!!

Comments:
I am now my cousin's caregiver. She was diagnosed with PKD several years ago. We are preparing her to begin dialysis soon, and would like some information on what she, and I, will face together. I should also point out that my cousin is developmentally challenged, and also has some mental illness issues. Foremost, I am concerned about her recent depression, as well as the necessary change in her diet (which seems to eliminate her favorite foods!!). Any information that anyone has will be appreciated.< >

Comments:
Was diagnosed w/PKD approx. 7yrs. ago.Was put on low dose of blood press. med. today. Also have kidney stones and was told this was rare. I would like to know if my three kids may have PKD, but was told not to check for ins. purposes. I also get kid. infections that get into bloodstream & have to be hospitalized. Not only do I have to carry pain med. w/ me, I have to carry antibiotics.

Comments:
I just found out that my biological mother has this disease. I have several cyst in my kidneys but are waiting for my doctor to get the ultasound results. I am playing the waiting game. And then what?

Comments:
dad died 58, lft kidney 5.2kg rht kidney 3.8 kg im 40,and have bigger kidneys from multiple cysts which ruptured in 99. hospital treated me for diverticulitis for 3 days before an ultra-sound showed them i knew my body better than them. when i asked questions they really didn't have an idea. i hope other people get better care than in australia where pkd isnt high priority. i was in an accident in 1984 spent 7 mths bedridden had numerous ivp xrays of kidneys was never told about cysts or size growth. i wasnt even told to control blood pressure. Garry

Comments:
Dad died when he was 39, I was diagnosed in 1992, hard to live with the pain and uncertainty that comes with the disease, feel that I can't make any long term plans, want nothing more than to be here for my children and one day hold my grandchildren. Have a great deal of pain, feel that the dr. is just waiting until my kidneys fail before taking any actions. Would like to know how they can identify a particular cyst in order to drain it, what test they can use, was hospitalized on and off for a year '96-' 7, Bowman-Gray was unable to locate particular cyst or cysts that was infected, no positive cultures of blood or urine was ever obtained.

Comments:
I WAS DIAGNOSED JUNE 1999, I NEVER REALIZED THAT SO MANY PEOPLE HAVE THIS DISEASE. I AM THE ONLY ONE IN THE FAMILY THAT HAS PKD. NO ONE ELSE HAS GOTTEN TESTED, THEY CHOOSE NOT TO. I HAVE TWO SMALL BOYS AND IF THEY ARE EVER DIAGNOSED WITH THIS DISEASE It WOULD TEAR ME APART. I MEET A VERY ENCOURAGING AND SWEET LADY NAME PATTI ON THIS GUEST BOOK. SHE IS THE PERSON I TURN TO WHEN I NEED TO TALK ABOUT PKD AND SHE SOME HOW FINDS SOMETHING TO EMAIL ME TO MAKE ME SMILE, KEEP IT UP PATTI, LOVE YOUR FRIEND BEC KY

Comments:
My father and sister have PKD and my father had a transplant 7 years ago and has been through more than I have time to write about. My sister has it and is doing fine, but actually my dad has been in the hospital for the last 12 weeks due to complication with his lack of immune system from the transplant. My problem now is I know I have cysts but wasnt able to confirm if they were polycystic in nature because I didnt have enough money to pay for the CAT scan. Are there any avenues I could take to find this info out without going broke?

Comments:
I need a good guide for my protein and calcuim intake. What meats are better than others. What I need is a good nutrition. Thanks Mary Harrison

Comments:
I was diagnosed with PKD when I was roughly 5 years old. At that time it was in only one kidney. Now I have it in both. I am interested in any information that will help me to have a better longer life with PKD.

Comments:
i would like to know if anyone has insomnia if yes what to do

Comments:
Although it's been rough recieving this diagnoses, it's truly helpful knowing that we are not alone. Have been losing a lot of weight and need to knoe if anyone has experienced this same symtoms as this. PLEASE FEEL FREE TO E-MAIL ME. THANK YOU

Comments:

Comments:
I was diagnosed with PKD last year. My mother, grandfather, and and uncle all had PKD. I am greatful for the information that I have found on the internet about PKD. It helps to know that I am not alone. I am looking for a support group in South Carolina. If anyone else is out there, please feel free to e-mail me. Here's to finding a cure-keep up the good work PKR.

Comments:

Comments:
Out of five children born to my father who eventually died of the disease, one brother has had two transplants and is still alive after 15 years of the disease, one sister died at the age of 47, one sister died at the age of 56. I was diagnosed about a year ago. Only one brother has not been diagnosed so far. Is this a dominant gene disease? Is it common for so many siblings to have inherited it? What chances do my 5 twenty-something children have I wonder.

Comments:
PKD in the family. First diagnosed at 22. 2 transplants, both failed. 15 years on hemo, 1 month on PD. Waiting for the 3rd transplant. My home page includes my 2 transplants story and info for hemo dialysis patients. My PD story soon. Good luck to everyone.

Comments:
I'm having trouble controlling my blood pressure. Does anybody else take an ACE inhibitor, a beta blocker, and a diuretic? Is that safe? Are there other natural methods to get the BP down? What about hawthorne berry? I heard it is similar to an ACE inhibitor. Also, are researchers exploring the connective tissue angle of this disease? I have mitral valve prolapse,a hernia, and a spot of scleroderma on my back{morphea}. Anybody out there with the same problems? Has anybody tried any alternative therapy such as acupuncture that has helped preserve kidney function and reduce the size and pain of the kidneys? By the way, the people that write in this guestbook are wonderfully supportive and encouraging. Keep up the good work and stay healthy!

Comments:
My condition has been passed down the family chain I was informed of my condition in 1996, I have been informed today 01/03/2000 that I would expect to be on dialysis within 5 to 10 years

Comments:
I was diagnosed with PKD after going for an ultrasound for something else. I was told that I had multiple cysts on both kidneys which terrified me. My late grandfather (who had PKD) had the first kidney transplant from a fraternal twin in the 1950's. My father,(59)has PKD and has 70% kidney function which is reassuring. I guess finding out about this now is better than 20 years down the line? I don't drink or smoke and exercise everyday and my BP is at 110/70. Finding out about this changed my outlook on life. I honestly feel healthier in this past year knowing about my disease because I am taking better care of myself than I ever did before. I worry about the future like all of us I am sure. I want to live a full life and hope that this condition won't stop me from doing so. Feel free to write to me anytime!!