| Name: Silvana Kostic | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes | What's your age/gender?: 43 | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Macedonia | Is it alright for others to e-mail you?: Yes |
Comments:
I hope I will find friends to talk about everything not just for kidneys
| Name: calford | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, full function | What's your age/gender?: 37, female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: nc, laurinburg, usa | Is it alright for others to e-mail you?: yes, please |
Comments:
AT THIS MOMENT I AM HAVE PAIN IN THE LEFT KIDNEY AND I WOULD LIKE TO KNOW WHAT TO DO TO EASE THE PAIN WITHOUT USING A LOT OF PAIN MEDICATION.
| Name: Shawn | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes/Unknown | 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: North California | Is it alright for others to e-mail you?: yes |
Comments:
I inherited this disease from my mother and also passed it on to my two beautiful daughters. Had I known then that I had this disease I dont think I would have reproduced and risked passing this on to future generations of mine. I've accepted my future
but Im Scared for my kids!
| Name: Sandra | 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?: 38/F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Georgia | Is it alright for others to e-mail you?: yes |
Comments:
My father has PKD and had a transplant 6 years ago. As I get older I get more frightened of my future. I have multiple large cyst in both kidneys. I try to keep my blood pressure under contol since high blood pressure can decrease my kidney function.
| Name: Paul Radley | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Full (as far as i'm aware) | What's your age/gender?: 40 Male | Are you on Dialysis/what kind?: none |
| Do you have a kidney transplant?: none | Where do you live? List state, area or country: Hertfordshire UK | Is it alright for others to e-mail you?: Sure |
Comments:
I've just been diagnosed with PKD. Inherited from father.
| Name: Denise | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: 20 percent |
| What's your age/gender?: 26 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?: I don't have an email address |
Comments:
I have not talked to anyone with pkd ever before in my life this is all new to me to find someone else who has this disease that no one seems to know much about!!
| Name: Cath donohue | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes.Waiting to find out | What's your age/gender?: female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Qld Australia | Is it alright for others to e-mail you?: yes please |
Comments:
I was diagnosed 12 yrs ago.My mother died of a related heart attack 3 yrs ago.I have just discovered I have got worse and have moved to Australia at the same time ,so I feel very isolated.I also have 2 sons who I have told very little.Please let me have all the info u have & let me talk to you.I am originally from the U.K.
| Name: Ronald Morgan | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 10% | What's your age/gender?: 51 Male | Are you on Dialysis/what kind?: Hemodialysis |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Jacksonville, Florida | Is it alright for others to e-mail you?: By all Means |
Comments:
I have been on dialysis for almost 5 years now. Be careful with your diet. If they say it can kill you, believe them.
| Name: Louis | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes 65% | What's your age/gender?: 43 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Northeast Indiana | Is it alright for others to e-mail you?: positively |
Comments:
Had this thing for over 23 yrs. Initially had 1/3 of one kidney removed back in '75 and virtually no problem, except with minor BP elevation. Last 3 months it has reared its ugly side. 1 large stone disintigrated, cysts drained and pain. Neph estimates
7 yrs before dialysis/Tx.
| Name: Harold Hatter Jr | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 25% | What's your age/gender?: male 51 | 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 have had pkd for twenty years. I am on a waiting list for a kidney since last Aug. Would like to hear from people who are on dialysis.
| Name: Pam Hooley | 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?: 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: County Durham, U.K. | Is it alright for others to e-mail you?: Yes - please do! |
Comments:
I'd especially like to make contact with other PKD patients in the U.K. as I'm the first in my family to have this disorder so I feel rather isolated. Also I'd particularly like to hear from anyone who suffers from liver cysts as so far this is my main problem.
| Name: Crystal | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Not that i know of. My grandmother died from it and my aunt and mom have it. | What's your age/gender?: Im 16 years old and female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: bethlehem, pa | Is it alright for others to e-mail you?: yes |
Comments:
Hi im 16 and im looking for comfort...seeming that PKD runs on my father and mothers side but my father does not have it. My grandmother died from it and currently my aunt and mom has it. They all had the same kidney doctor and it is said that they have 10% more cysts then my grandmother ever had. Knowing that it runs on both sides of my family I came to this web site to get info.It has helped me alot Thank you!
| Name: Sandy Inman | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: not sure/not sure | What's your age/gender?: 37 / F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Fairfield, Ohio | Is it alright for others to e-mail you?: yes |
Comments:
My father had PKD and I was tested in Jan."99" by way of CT Scan. Test showed 2 cysts, one on each kidney. My doctor "OB/GYN" told me not to worry, alot of people had cysts for unknown reasons. Said we would keep an eye on it. PLEASE somebody, what does
it sound like to you? Do I have this disease or not? What should I do?
| Name: catherine | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 15 yr old son/ 100% | What's your age/gender?: 15 yr/boy | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: ma | Is it alright for others to e-mail you?: yes |
Comments:
My 15 yr old son was diagnosed with PKD at the age of 9. We have altered our diets drastically and see a nephrologist 1xyr. He is doing fine but the doc put him on vasotec 2 yrs. ago as a preemptive measture. Would love to speak with other parents and share information.
| Name: Lelsie Del Sesto | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes | What's your age/gender?: 27 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Kensington, NH | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Shelia Dischbein | 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?: 44 y.o. | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Missouri | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Marsha | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes. Alot | What's your age/gender?: 45/F | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Ohio | Is it alright for others to e-mail you?: Yes, please |
Comments:
Never knew what Daddy died of--found out at age 42. Cried for a long time, then educated myself. Just now feel that I'm coping with life. Back pain's the worst.
| Name: Jeff Carlson | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes-unknown | What's your age/gender?: 36, M | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: South Dakota | Is it alright for others to e-mail you?: yes |
Comments:
My father also has PKD and received a cadaver kidney transplant about 8 weeks ago. It is very slow and is only now appearing to start to work. He is taking prednisone and has some bad side effects (loss of appetite, depression). I would like to hear from anyone else who has or is taking prednisone. Thank you.
| Name: Paul Sandberg | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 2nd transplant ok! | What's your age/gender?: male 63 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: 2nd | Where do you live? List state, area or country: Orange Co,CA | Is it alright for others to e-mail you?: yes |
Comments:
It's too late for me-but I've 2 sons w/PKD. are there any studies done on neutrician and PKD to indicate how good neutrician might impede or slow down the progression of the disease?
| Name: Mardie | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, 37% | What's your age/gender?: 46F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Ca. | Is it alright for others to e-mail you?: sure |
Comments:
Looking for others with about the same function to compare notes with. Also on insurance--my carrier recently denied follow-up with the nephrologist and is sending me back to my GP. Anyone having problems with insurance coverage out there? Also starting
to wonder about Disability. I'm a teacher, and teaching isn't a cake walk. Would enjoy some company in this journey of ours......
| Name: Sarah Shelden | My URL: Visit Me |
| My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: unknown |
| What's your age/gender?: 18/F |
Comments:
| Name: Phil | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: Yes, normal |
| 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: Herts, United Kingdom | Is it alright for others to e-mail you?: No |
Comments:
I was diagnosed (by ultrasound scan) after suffering three bouts of e-coli infection. I have no other symptoms. I inherited from my mother who is in her late seventies and shows no symptoms.
| Name: Mark | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: YES NOT MUCH | What's your age/gender?: 37 W/M | Are you on Dialysis/what kind?: YEP HEMO 9MOS |
| Do you have a kidney transplant?: ON A LIST BROTHER IS TRYING TO DONATE ALSO | Where do you live? List state, area or country: JACKSONVILLE, FLORIDA | Is it alright for others to e-mail you?: SURE |
Comments:
ITS A VERY GOOD PAGE. IM LEARNING MORE ABOUT MY CONDITION ALL THE TIME. I WOULD GLADLY TRY TO HELP OTHERS IF I CAN.
THANKS,
| Name: page | 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?: 51/F | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: NY | Is it alright for others to e-mail you?: Yes |
Comments:
Just diagnosed by accident. Family doctor referred
me to a urologist. Should I be seeing a nephrologist? I keep hearing this is a common
disease and not life threatening.
| Name: Sabina Paredes | 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?: 28 , female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: IL | Is it alright for others to e-mail you?: yes |
Comments:
Please e-mail me.. I was diagnosed with PKD about 48 hours ago. I am terrified to death and would love to talk to someone about it. I have no clue how to tell my fiancee, I feel lost, confused, etc. My biggest fear is that I will not be able to have children. If anyone out there has had children, or knows how to break the news to your loved ones, or just want to chat please email me !!
Thanks
| Name: Jeff Payne | 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?: 54 Male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Los Angeles, California | Is it alright for others to e-mail you?: Yes |
Comments:
| Name: william | 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?: 38/male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: texas, dallas | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Bridget | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes , not sure about function | What's your age/gender?: im female and 37 | Are you on Dialysis/what kind?: no not yet |
| Do you have a kidney transplant?: no not yet | Where do you live? List state, area or country: New York,upstate | Is it alright for others to e-mail you?: yes ,feel free |
Comments:
This is a great site and has helped me a great deal. Would like anyone who wants to chat about PKD to feel free to contact me.
| Name: Steve Wade | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes (not sure) | What's your age/gender?: 42 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Millington Tennessee | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed 4/29/99 and I guess I have alot to learn.
Thanks Steve