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i came to this website to get information on this and i came to this so if any one wants to email me and tell me how this is that would be great!

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Deseo contactarme con personas que hablen en español, en especial saber si en Argentina se estan haciendo alguna investigación sobre PKD.

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I've had PKD since the day I was born. I'd be more than happy to answer anyone's questions to the best of my knowledge!

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I am looking for other PKD patients that have experienced bleeding cysts (causing blood in the urine) for more than a week. My husband has had blood in his urine for over 2 weeks now accompanied by pain. The doctors feel the pain is caused by the cysts. However, the bleeding has yet to stop. Has anyone ever had any procedures done to stop the bleeding? He is at risk for getting his right kidney removed if the bleeding doesn't stop soon.

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I filled this out for my mother... She has this disease and so do i.. I think it might be nice for her to talk to other people about this..

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ive known about my pkd since beforeage 19, when my mom needed atransplant. she didnt get one she was too sick, i decided i did not want to go thru the same. i just turned 44 , she died age 40, most of my relatives are deceased because of pkd or heart dis ase. so ive mostly lived with the knowledge and tried to take care of the people around me. i have five adult childdren and nine grandchildren, did not have genetic counseling, so hope i haven't passed on the pkd.I have explained some to my children, so t ey will take care of their health, but do not want to scare them, dont want them to worry about me either. am a licensed cnt , worked in long term care, now unable to work, but take care of my little brother who is blind and brain damaged but delightful, oth our parents are deceased, and two other brothers not much count. my husband deceased, and i avoid relationships because of the future of my disease. I would welcome all e mail from all persons , i think my mind is still working at least.forgive me for talking about me so much, i have never talked to anyone else who may have the same health related probs i do, so hiding the problem is the norm. im dreading dialysis, may refuse it--first instinct- knowing chances for transpl are very slim, so trying to ccomplish as much of my life path as possible while i still can, hope to hear from someone soon

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My Grandmother died from complications due to pkd. My Mother was having problems with pkd before her death. My great aunt has had a transplant and is doing fairly well. Since everyone is gone I do not know much about it and since I know that I have it I am thinking I better get educated about it.

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Ijust found out that I have PKD....I'm going to see a kidney doctor on October 30.....My mother passed away in 1976 from kidney failure she was 42 years old..I have cysts on both kidneys and liver and oviers.email me aytime. bye

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I have been researching this disease because of the active role it has played in my family. I am only 19, but i may have it so i want ot know all that I can in case I or my brother may have it.

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Im looking for a way to get grants or donations helps for http://davidmurphyfoundation.com, to help with a research site at my community so others around the world can get this information and any other helps,researches, institutions and all that is available so everyone can benefit as much as possible on any helps or encouragement of any kind,i knew i had this 15 years or so ago but by my own faith and my choosing as well i would not let this even be confessed from my mouth,i think sometimes that this is the only reason im alive today, i just stood on my faith and kept it to myself,i have all the pains and symptoms everyone has too,my lungs collapse at random,then get better,my kidneys always hurt with sharp pains like spears got me,my sides have constant sharp pains for 15 years,headaches,dizzie spells,almost passing out for no reason at all, rained out of no where ,cant get the energy to function at times,many more pains too,perhaps the greatest pain is the mockings and cruelty of having to confess my pain and deny my faith before a judge only to be more rediculed and the sadness i feel when watch innocent handicapped individuals that cant fend for themselves or find a hope and if they do they are stripped of their hope only left in desperation,my heart is torn on this issue alone,it makes me forget my pain,sometimes i feel like im dieing,but im being treatened with a short jail term because i cant produce creatine like everyone else,thats why i want to stop the abuse on this form of drug testing for all the innocent who suffer as well,judges have no right to forget the first law,ignorance is no excuse for the law,yet they abuse the handicapped without research or cause.thank you david murphy foundation

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I am not doing too well. My cysts on my left kidney are rupturing. My renal physician seems uninformed and unconcerned. I am not sure how to act with a ruptured kidney. And I am unsure why it is rupturing. If anyone can point me in the right direction I would be grateful. Thank you.

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My father was the carrier of the polycystic kidney disease...had kidney stone bouts in his late twenties and heart disease problems in his late thirties. He died of a heart attack at age 43. My dad's father died of an aneurysm at 36 and my dad's sister ied of one at age 29. Two years ago, my first cousin died of complications from at-home dialysis, she was only 46. My only sibling,so far, doesn't have any signs of the disease and she is now 43. She has 2 young daughters and I'm worried about them too I have other cousins who are in their 40's and 50's and even an aunt who has the disease.

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i would like to thank you for putting this information on the internet. i know what it is like to live with someone who has it, my mom. my mom was diagnosed in 81 and is still hanging in there. thank you again for helping me understand more

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my husband was diagnosed in 1970, he is now at 30%, however he has followed a strict diet for almost 8 years, he limits his protein, and drinks lots of water.just this year he has declined considerably, i noticed that he cannot do alot of the things he is used to doing, and he is in pain more. his family has a long history of this affliction. unfortunately he has passed it on to our oldest daughter 28 and our granddaughter 5. i think that is the hardest part for him, it is hard to think that you gave your loved ones this disease. we did not know that it was familial when we had our first child, we chose to have a second child ten years later, so far she has shown no signs.

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I am originally from West Virginia. Family is also from Kentucky, Ohio. Voiers, Tyree, hope to connect with them to see who has PKD. Ws diagnosed when I was about 37. Not to many problems until recently. Very tired, insominia just take one day at a time. Best wishes to all of you. I am the only one out of 6 children that has been diagnosed. My son who is now 27 has PKD. The doctors said it is a disease that you are born with, it is just when it decides to wake up.

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Diasnosed when I was 26, inherited from mother. no pain but cannot run my 3 miles per day anymore.

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I'm looking at starting dialysis soon or possible transplant. A family memeber is undergoing tests to check compatability. Was first found to have PKD at age 17, very slow changes in creatine level until this year .

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I do not have PKD, but my daughter did. She passed away on April 2, just two days before she turned eight months old. I still do not know a lot about this disease, but would like to learn as much as I can. The doctors told me that she did not have pain but I'm not sure of this. No one in my or my husband's families have had this disease. Any information would help me understand what my daughter suffered in her short life. My prayers are with all who suffer from this disease. May God Bless!

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I am interested in learning more about the disease and how to modify my diet. I am eager to hear from others with this disease.

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Hello, My grandfather and oldest uncle both died of this disease. My father has just been diagnosed of it. I would like any info to be e-mailed to me at the address given:saranaz@juno.com This is located at the church where I attend. Thanks ever so much. For I A - Ronnie Willis