PKD Information Page (Main Page)
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| Name: Helen Carter | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes - 75% | What's your age/gender?: 58, female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Bronx, NY | Is it alright for others to e-mail you?: yes |
Comments:
have family history of PKD, lost sister and brother and have a brother currently facing removal and, on availability, transplant of kidney. no dialysis yet but following surgery expected to start. I feel fine and have no symptoms, take vitamins and drink lots of water.
| Name: chris cottrell | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, As yet undefined, but I'm still well | What's your age/gender?: 39, male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: United Kingdom | Is it alright for others to e-mail you?: yes |
Comments:
I'm interested in understanding the likely progession of the condition. Both my parents are undiagnosed, but in their 60's and fit and well. My Grandfather died of renal failure aged 89.5 years and with no diagnosis of the condition. I would welcome some other experiences of the progression of the disease/condition.
Thanks
| Name: Adriana Papadopoulos | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: yes /all |
| What's your age/gender?: Female/ 37 | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: Adelaide Australia |
Comments:
My grandma died of PKD aged 55years and my father had a kidney transplant and lived 7 years with that kidney. I have pkd and was very interested to see so many others who are in the same boat.
| Name: Angie | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, don't know | What's your age/gender?: 47, female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Sask., Canada | Is it alright for others to e-mail you?: Yes |
Comments:
I found out I had PKD at age 33 and have thought about it every single day since then. My mother passed away from the disease when she was 61. She had two brothers pass away from it when they were in their forties. She has another brother with it who is in his sixties now and on dialysis. The doctor told her she wasn't a good candidate for a kidney transplant. I don't know why--that was in 1987/88. I wonder if that is still true today--whether anybody can get a transplant or not(provided, of course, that there is a suitable donor)? She also had liver cysts which I think were quite bad. This disease has consumed my life. I think about it all the time.
| Name: Jennifer | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, Full | What's your age/gender?: F/27 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Michigan | Is it alright for others to e-mail you?: yes. |
Comments:
I am looking for others in my age range (25-35) who have PKD or have lived in a family that it has affected.
| Name: justin paslay | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no - my 3 year old son. | What's your age/gender?: 3 yr. male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: eugene, or | Is it alright for others to e-mail you?: yes |
Comments:
I have a 3year old son who was diagnosed with PKD last year. I need to know more about this disease.
| Name: Rick Whaley | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 30% remaining | What's your age/gender?: 38 male | Are you on Dialysis/what kind?: not yet |
| Do you have a kidney transplant?: not yet | Where do you live? List state, area or country: St. Louis MO, USA | Is it alright for others to e-mail you?: yes |
Comments:
I am a 38 yr old male with ADPKD. I am on Permanent Disability due to chronic pain from PKD. I would like to hear from others who have experienced the problems pf PKD
| Name: John A. Rohr | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes none | What's your age/gender?: 51 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: yes | Where do you live? List state, area or country: michigan | Is it alright for others to e-mail you?: yes |
Comments:
have had kidney transplant, cmv,natural kidneys removed,cancer from fk506
| Name: Bienvenido S. Magnaye | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: I don't know. Kidney function tested normal | What's your age/gender?: 70, male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Las Pinas Metro Manila, Philippines | Is it alright for others to e-mail you?: yes, provided no virus infected mateiral |
Comments:
I commend this research activity as it makes available information that doctors do not normally share with patients probably on the theory that patients cannot completely compehend diseases and need only to wait for Doctor's instructions on treatment modalities. My purpose is to know more about prevention! Thank you.
| Name: Greg Lewis | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, 80% | What's your age/gender?: 37/M | Where do you live? List state, area or country: FL |
| Is it alright for others to e-mail you?: yes |
Comments:
Any info, thanks!
| Name: maria | My URL: Visit Me | My Email: Email Me |
| What's your age/gender?: 38/f | Are you on Dialysis/what kind?: was for 4 years | Do you have a kidney transplant?: yes for 7 years |
| Where do you live? List state, area or country: FL miami | Is it alright for others to e-mail you?: yes |
Comments:
hi there I was in dialysis for 4 years and then got my transplant. On june 21 it will be 7 years now. I am doing good. would love to talk to others with kidney transplant. My dad is on dialysis for 15 years now and my brothers kidneys r gone to this is a family thing ^_^ i have a 16 year old daughter which i am so afraid for her
| Name: Pam | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes - kidney function normal | What's your age/gender?: female - age 36 | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: County Durham, U.K. | Is it alright for others to e-mail you?: Yes |
Comments:
My main PKD-related problem is liver cysts - my liver rests on my right hip bone and my waistline is several inches larger than it would otherwise be. Unfortunately none of the cysts are large enough to be worth draining - my liver probably resembles a sponge. I'd like to hear from anyone with the same problem or anyone with any info on the link between estrogen and liver cyst size - do the cysts stop growing after the menopause and it is worth inducing the menopause/removing the ovaries? I feel that somebody out there must have some direct experience on HRT/liver cyst development/association of liver cysts with menstrual problems/PMT etc etc
| Name: Beth | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes-----creatinine-.09 | What's your age/gender?: 53 female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: yes | Where do you live? List state, area or country: W.Va. | Is it alright for others to e-mail you?: yes |
Comments:
I've known that I have PKD for about 25 years now.. I was on dialysis for almost 2 years. Had my transplant in February 1997 . Would like to hear from others with pkd. I've never known anyone with this. Stay well!!!
| Name: Barry M. Owens | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, less than 20% | What's your age/gender?: 44 male | Are you on Dialysis/what kind?: yes, peritoneal |
| Do you have a kidney transplant?: no, in testing | Where do you live? List state, area or country: East Glacier Park, Montana | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Bob | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: Yes 100 % |
| What's your age/gender?: 48 male | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: Indiana | Is it alright for others to e-mail you?: yes |
Comments:
I have had PKD for 30 years, and have shown no ill effects, except for high blood pressure. Mother has had PKD since she was 16 and has had a transplant
| Name: Troy Pharr | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, both native kidneys removed | What's your age/gender?: 47, male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: yes | Where do you live? List state, area or country: Kansas City, Mo. area | Is it alright for others to e-mail you?: yes |
Comments:
I had a kidney transplant on 11-21-97. Wife was compatible and was able to donate. Had both of my non-working kidneys removed 01-27-99. Kidney function looks OK.
| Name: V. Nico | My URL: Visit Me |
| My Email: Email Me | What's your age/gender?: F-37 |
| Where do you live? List state, area or country: Chattanooga, TN |
Comments:
Grandmother died in 1968. Aunt has had kidney transplant. Father has only 4% function at this time. Not on dialysis yet. Doctors are amazed that he is not sick. Doctors say I have an 88% chance of having this. Afraid to be tested at this time.
| My URL: Visit Me | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: YES-NORMAL |
| What's your age/gender?: 20 | Are you on Dialysis/what kind?: NO | Do you have a kidney transplant?: NO |
| Where do you live? List state, area or country: ARKANSAS | Is it alright for others to e-mail you?: YES |
Comments:
| Name: GAIL | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: YES , DON'T KNOW | What's your age/gender?: 49 FEMALE | Are you on Dialysis/what kind?: NO |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: BRITISH COLUMBIA, CANADA | Is it alright for others to e-mail you?: YES |
Comments:
| Name: Rich Simmons | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes-don't know | What's your age/gender?: 51/male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: New York | Is it alright for others to e-mail you?: yes |
Comments:
I've had kidney stones on four occasions, PKD was discovered during the first kidney stone episode when I was in my thirtys. My father has PKD and is on the verge of dialysis.
| Name: tanya | My URL: Visit Me |
| My Email: Email Me | Where do you live? List state, area or country: knox,indiana |
| Is it alright for others to e-mail you?: yes |
Comments:
HELLO!I AM NOT YET A PKD PERSON,MY MOM JUST RECENTLY FOUND OUT SHE HAD THIS,AND FROM WHAT I AM TOLD IT IS HEREDITERY,SO IT IS MORE LIKELY THAN NOT THAT I ALSO WILL GET THIS DISEASE.I HAVE YET TO BE TESTED,I KNOW THAT IT IS IMPORTANT,BUT WITH ME BEING ONLY
5 AND HAVING 2 KIDS,THE TEST IS NOT WHAT I WANT TO DO.I WAS JUST WANTING TO TALK TO SOMEONE AND MAYBE GET SOME MORE INFORMATION ON THIS AND MAYBE SOME INCOURAGEMENT,SO IF YOU WANT TO TALK TO ME LET ME KNOW.
| Name: donna wilezol | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes..no functional loss | What's your age/gender?: 41/F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: NJ | Is it alright for others to e-mail you?: yes |
Comments:
Has anyone heard of an experimental treatment that involves injecting cysts with alcohol to shrink them and reduce functional loss? I'd appreciate hearing @ it.
| Name: Sylvia Edwards | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes,, 20% | What's your age/gender?: 55/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Bucks, UK | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed with PKD after a routine medical screen at age 50 - my blood pressure was raised and creatinine levels high in urine. Had a fright in Dec 1998 with blood in urine - hospital scans & test revealed 20% function remaining with very enlarged
kidneys. Consultant suggests normal lifestyle BUT watch Blood Pressure regularly to stay better than 150/85 and test urine periodically for creatinine level changes, etc. Expect to need dialysis in 3 to 5 years then transplant. Does anybody know of UK contact groups, etc ? Best wishes - Sylvia
| Name: Louise Jerrett | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, 50% | What's your age/gender?: 45 female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Sask. Canada | Is it alright for others to e-mail you?: yes |
Comments:
I have been diagnosed with Pkd for 15 years and have done a great amount of research. Are you experiencing pain? What has worked for you? Can my children get this disease? Risk of pregnancy? Please feel free to contact me.
| Name: Lisa J. Dudek | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: Yes, still 100% |
| What's your age/gender?: 36; female | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: Massachusetts | Is it alright for others to e-mail you?: yes |
Comments:
I would like to get more information on the soy protein diet and am also trying to get pregnant and would like to know the effects of my health from pregnancy.
| Name: Betsy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, am not sure | What's your age/gender?: 48yr. old female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Pa. | Is it alright for others to e-mail you?: yes |
Comments:
I think that this is a dreaded disease, that has already caused way too many deaths.I would like to see more monies alloted for research as this disease kills way too many people per year. Please feel free to e-mail me if you have any interesting topics
relating to this disease. Thank you. The Weege
| Name: Jonah | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, 90% | What's your age/gender?: 43 male | Are you on Dialysis/what kind?: not yet! |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Kyoto, Japan | Is it alright for others to e-mail you?: sure |
Comments:
if Japanese or English network exists here....
| Name: David Rignall | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes 100% currently | What's your age/gender?: 33, Male | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: England, Northampton | Is it alright for others to e-mail you?: Yes |
Comments:
| Name: John F. Maher | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no | What's your age/gender?: 57/male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: doner to my brother with PKD | Where do you live? List state, area or country: CA | Is it alright for others to e-mail you?: no |
Comments:
I have a history of at lease 3 generations with PKD. It skipped me!? I would like to know if my offsprings are capable of getting the disease?
| Name: Michelle | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes - 100% | What's your age/gender?: 38 - female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: WA | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed a few years ago. Aunt has had 2
transplants, uncle starting dialysis now. Am
looking for perventative idea
| Name: Diana | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no | What's your age/gender?: 23/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Australia | Is it alright for others to e-mail you?: yes |
Comments:
My mum (47) was diagnosed 8 years ago as was one of her brothers. She currently is okay with moderately high BP. I recently had an ultrasound that was normal and my BP is fine. Is there still a chance I may have the disease? What other tests can I have to be 100% sure?
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