Comments:
have been diagnosed with PKD for 10 years. Suffer from kidney stones regularly, cysts on liver as well. Sister also has PKD, diagnosed 2 years ago as a result of high blood pressure. Just browsing through, looking for any information I can get.

09/12/98 17:17:25

Name: Debbie Marasco	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes-Idon't know	What's your age/gender?: 29/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Austin, Tx	Is it alright for others to e-mail you?: yes

Comments:
I am the coordinator for the Austin Friends Group.

09/04/98 22:05:38

Name: Tracie Wallace	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?: 29/ female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Erwin, NC	Is it alright for others to e-mail you?: yes/ Please

Comments:
I have just found out that I have PKD. My mother died from PKD at age 36. I am 29 now and I am really scared! My sister has the desease also. She is 24. If anyone has advice for me , please e-mail me. My family has had allot of tradgedy recently. We are t usting God for his guidance.

09/04/98 00:02:52

Name: Pam Smith	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?: 45/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: CA	Is it alright for others to e-mail you?: yes

Comments:
Just trying to connect to other people with this disease to compare notes.

08/31/98 21:37:01

Name: Linda R. Hall	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?: female. 46	Are you on Dialysis/what kind?: ccpd
Do you have a kidney transplant?: no	What do you live? List state, area or country: New York	Is it alright for others to e-mail you?: yes

Comments:
I started dialysis 3 years ago. [capd} I lost my catheter to peritonitis last May. Did hemo until Dec. Back on ccpd until last month. Went to ccpd so I have my days free.

08/26/98 15:06:50

Name: Terry Lawson	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?: 52/m	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Texas	Is it alright for others to e-mail you?: yes

Comments:

08/25/98 15:10:55

Name: John Kipe	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?: 39/Male	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Pa.	Is it alright for others to e-mail you?: Yes

Comments:
I have a long history of PKD in my mother's family. My grandmother passed away due to kidney failure. My aunt and cousin have had transplants. My uncle is on dialysis. My mother will be on dialysis before year end. I am at 20% usage. My 18 year old son has been diagnosed with PKD.

08/19/98 14:46:04

Name: Fernanda	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: no - a friend of mine	What's your age/gender?: 38 years old	Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: no	What do you live? List state, area or country: Buenos Aires - Argetina	Is it alright for others to e-mail you?: yes, please

Comments:
I thank you or others who has any information about new treatments for ADPKD.

07/29/98 12:54:10

Name: Jerry Lacy	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: normal	What's your age/gender?: male/45	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Florida	Is it alright for others to e-mail you?: yes

Comments:
I have just been diagnosed with PKD, quite a suprise, as I wasn't aware of anyone in my family having kidney disease.

07/29/98 03:18:06

Name: Diana	My URL: Visit Me	My Email: Email Me
What's your age/gender?: 48/F	Do you have a kidney transplant?: yes	What do you live? List state, area or country: Iowa
Is it alright for others to e-mail you?: yes

Comments:

07/28/98 17:58:17

Name: Brent Banks	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, unsure	What's your age/gender?: 28/male	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Greenville, SC	Is it alright for others to e-mail you?: Yes

Comments:
I just found out that I have PKD, but I've anticipated it for a while. My father has had 2 transplants (due to PKD), and he is doing pretty good. I am very interested in diet and exercise information. If anyone could help, I would appreciate it.

07/26/98 03:01:26

Name: Bill Layer	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?: 29, M	Are you on Dialysis/what kind?: N/A
Do you have a kidney transplant?: N/A	What do you live? List state, area or country: Minnesota	Is it alright for others to e-mail you?: yes

Comments:

07/23/98 16:53:24

Name: Jane	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?: 34/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Denver,CO	Is it alright for others to e-mail you?: yes

Comments:
Ihave pkd. My older sister has just started hemodailysis and is awaiting her transplant. My father died from pkd at age 37 in 1973. I am taking vasotec to control my blood pressure. After visiting this sight I realize my story is alot of other family's st ry as well. I would like to hear from anyone who has a similar story to share.

07/23/98 01:46:51

Name: janice may	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 5%	What's your age/gender?: 54-F	Are you on Dialysis/what kind?: capd
Do you have a kidney transplant?: no	What do you live? List state, area or country: Rochester,NY	Is it alright for others to e-mail you?: yes

Comments:
I am interested in talking to other PKD patients who are living with CAPD and hearing of their coping situations especially as I am attempting to continue work. I would also like to find out others' physical symptoms and how they are being treated. I have sleep difficulties and cramping and I am trying different approaches to improving this. How do you cope psychologically? I know no others like myself with this disease. I am a teacher. Please respond.

07/21/98 16:35:03

Name: Marcus Seiler	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 80%	What's your age/gender?: 24 yrs old MALE	Are you on Dialysis/what kind?: NO
Do you have a kidney transplant?: NO	What do you live? List state, area or country: Washington, DC AREA	Is it alright for others to e-mail you?: YES

Comments:
My father has had a transplant, I have the disease, and I want to find out as much as I can about this. What are some good sites besides this o

07/17/98 20:06:52

Name: Christina Godfrey	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: have pkd; transplanted 1992	What's your age/gender?: female; 28	Are you on Dialysis/what kind?: was on hemo for 6 months
Do you have a kidney transplant?: transplanted july 9, 1992	What do you live? List state, area or country: 23 Quail Ridge, Dahlonega, GA 30533	Is it alright for others to e-mail you?: sure

Comments:

07/14/98 16:04:18

Name: Carole McCloskey	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: none	What's your age/gender?: 50	Are you on Dialysis/what kind?: Not any longer
Do you have a kidney transplant?: Yes, for 8 years	What do you live? List state, area or country: NJ	Is it alright for others to e-mail you?: yes

Comments:
PKD runs in my family. I was on dialysis for 18 months and then received a transplant in 1990. I am working, am in good health, and feel absolutely terrific. I watch my diet and exercise everyday. We have a gym at work which makes it really easy to exercise and stay healthy.

07/07/98 03:52:13

Name: Gerald Whitman	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?: 56/male	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: New Glasgow,Nova Scotia,Canada	Is it alright for others to e-mail you?: yes

Comments:
Just found out that I have PKD 5 days ago. Still very new and learning as fast as I can.

06/26/98 18:22:20

Name: Dolie1	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes-very little	What's your age/gender?: 70 years-female	Are you on Dialysis/what kind?: yes-P.D. Cycler
Do you have a kidney transplant?: no	What do you live? List state, area or country: Illinois	Is it alright for others to e-mail you?: yes

Comments:
Does anyone have any trouble sleeping while on P.D.? How can I stop My skin from itching? Any information would be helpful.

06/26/98 02:35:08

Name: gary	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes,60%	What's your age/gender?: 50m	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: mo	Is it alright for others to e-mail you?: yes

Comments:

06/25/98 16:43:55

Name: Barbara Porter	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/unkown	What's your age/gender?: 55/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Arizona	Is it alright for others to e-mail you?: yes

Comments:
My father died in the fifties along with his sister. This was before all the current dialysis and transplant procedures. He had surgery to remove the cysts. It was sucessful, but he had a cerebral hemmorage soon after the second surgery. My two cousin had dialysis until their transplants, but died soon after the transplants. I am the only known living member of my family with PKD. So far, I have had no problem. I am thankful, but cautious. I also have cysts on my liver. I keep urging my sons to be checked. Thank you for this page and the shared information.

06/24/98 20:58:43

Name: Linda Chupka	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Not Sure	What's your age/gender?: 41 - Female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Edmonton, Alberta, Canada	Is it alright for others to e-mail you?: yes

Comments:
I havelived with a long family history of this disease and feel like I've seen it all. I am just starting experience some changes in my body. Can tell my liver is a little larger and kidneys measure 19 cm. I feel great though, have never been on blood ressure medication and have very good blood pressure (110/72). I exercise vigorously, job, walk, play golf. So far am the only one in family to go untreated for this long. I would like to talk to someone about diet, exercise, etc. I really think my exe cise and eating habit have prolonged my health cause the rest of my family have much, much worse cases. Any ideas on vegetarian diet? I do like meat but I would be willing to try.

06/21/98 06:32:21

Name: Y.SUSHAMA	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: I have bilateral ADPKD, till now, renal function is normal	What's your age/gender?: 22years, female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Karnataka state, INDIA	Is it alright for others to e-mail you?: YES,SURE.

Comments:
THANK U DEAR PAGE!! VERY HAPPY TO FIND U!!! HOPE ALL YOUR USERS CAN HELP ONE ANOTHER!!!

06/19/98 20:18:40

Name: seminolestar	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?: no	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: florida	Is it alright for others to e-mail you?: yes

Comments:
bye now you must think this woman is a nut ,trust me i'am not .my nephew has cancer in his one remaining kidney,plus kidney failure runs in his family and he is worried about his brother giving him a kidney its all so confusing the drs are going to try to shrink the tumor and cut it away ,he wonts to try this frist ,i pray it works for him .i will not go into this whole story but it is so sad and so uncalled for some times there are doctors who just try to play god and they arent he was never told he had c ncer in the frist kidney and it was removed five years ago and now he is in a fight for his life and we can only hope he makes it thank you for a moment of your time

06/19/98 01:04:29

Name: brandy fields	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: My son has arpkd and chf	What's your age/gender?: he is 3	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: indiana	Is it alright for others to e-mail you?: yes

Comments:
I would like to here from anyone who has pkd or knows someone with pkd .

06/18/98 23:17:51

Name: Rekha	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: My brother /unsure	What's your age/gender?: 33, male	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: yes, if i match, i'll be the donor	What do you live? List state, area or country: United Arab Emirates - currently on job, originally from Bombay, India	Is it alright for others to e-mail you?: yes

Comments:

06/18/98 04:20:50

Name: jim hall	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?: 55/male	Are you on Dialysis/what kind?: was
Do you have a kidney transplant?: yes	What do you live? List state, area or country: ala	Is it alright for others to e-mail you?: yes

Comments:
i have pkd but never heard of it till 1989. no known past relatives has record of pkd. most direct kin lived till 70s 80s years old. guess i am the lucky one. have bro and sis both tested found small but problemless cysts.

06/16/98 17:10:35

Name: Richard J. Tokarz	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: my wife Valerie does	What's your age/gender?: 41 female caucasion	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: AZ 85635	Is it alright for others to e-mail you?: yes

Comments:
we need to find a list of qualified doctors in this field of PKD in Arizona and Missouri.... Can anyone help?????

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