04/03/99 01:40:55

Name: Brenda	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, 35%	What's your age/gender?: 54 female	Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: not yet	What do you live? List state, area or country: Massachusetts	Is it alright for others to e-mail you?: yes

Comments:
I started doing genealogy in 1964 for medical problems but wasn't dianosed w/ PKD til 1975. I have lost from 50% to 35 % in past year which doctors explain is hendered by my dibetis. I have read the guestbook and can relate to several. I have 4 children, 3 were toxic births. My BP became out of control about the same time I was dianosed. Some of you mention a low protien diet but I wonder how this would effect my sugar? Last week I had a MRI and the results shows a aneryisum in the right side of brain. Has anybody else delt with this side effect? Trying hard to take one day at a time and putting the rest in God's hands. Brenda

04/02/99 01:04:51

Name: Terry Shaw	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, 14%	What's your age/gender?: 45, male	Are you on Dialysis/what kind?: Yes, hemodialysis
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:
I started dialysis the first of March/99. I have known that I had PKD for approx. 20 years. I am just now discovering the pros and cons of dialysis first hand.

03/31/99 19:48:20

Name: Dan Wilson	My URL: Visit Me	What's your age/gender?: 22
Are you on Dialysis/what kind?: yes	Do you have a kidney transplant?: yes	What do you live? List state, area or country: us
Is it alright for others to e-mail you?: no

Comments:

03/29/99 23:23:45

Name: Walter	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes... 70%	What's your age/gender?: 26	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Peru	Is it alright for others to e-mail you?: yes

Comments:
My mom died from PKD and I have the disease too. I'm trying to have a normal lifestyle. I've recently graduated as a MD, so I know the magnitude of this disease. I've faced the sadness and pain of dialysis since I've seen them on my mom... but I think t at we have to live the present and try to live as the last day of our lives... Regards...

03/29/99 21:09:55

Name: Mark Hamner	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes....dont know	What's your age/gender?: 31 yr. male	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 was diagnosed with PKD about 2 yrs. ago. Everything works fine, but I have a very difficult time finding out what kind of foods I should and should not be eating.....I hope someone can help... Thank you.....

03/29/99 12:43:37

Name: Sam Arab	My URL: Visit Me
My Email: Email Me	What do you live? List state, area or country: Australia
Is it alright for others to e-mail you?: yes

Comments:
I do not have PKD but my 1year old son does

03/26/99 13:31:21

Name: Lisa Weldon	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: My 1 year old son was born with ARPKD. He has about 75% kidney function right now	What's your age/gender?: I am 28/ my son is 1	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: My husband or I hope to be a match	What do you live? List state, area or country: Cottage Grove, Minnesota	Is it alright for others to e-mail you?: Yes

Comments:
My son was put in the NICU immediately after birth and three days later diagnosed with ARPKD. He takes 2 blood pressure medications three times a day. At his 1 year exam they found problems with his liver and he is now on another medication. He will ne d a kidney transplant and possibly a liver transplant sometime during his childhood. If there is any one who has a child with recessive polycystic kidneys please contact me. I would love to talk to you.

03/25/99 23:20:03

Name: Dohnna Collins	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/ 7% function	What's your age/gender?: Female/48	Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: on the list	What do you live? List state, area or country: Vienna, VA. USA	Is it alright for others to e-mail you?: yes, please

Comments:
I was dignosed in 1986 with PKD and never thought I would now be facing dialysis and transplant. I am scheduled to have a periteneal catather inserted on 4/5/99 to begin dialysis. I would love to hear from people that are on dialysis. It's my intention to continue to live my active life I have prolonged my kidney function by diet, meditation, and going to a natropathis doctor for my kidney and overall health, especially keeping my immune system up and running!

03/25/99 23:01:45

Name: Jack Dempsey	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 20 percent	What's your age/gender?: 52 male	Are you on Dialysis/what kind?: haemo
Do you have a kidney transplant?: not yet	What do you live? List state, area or country: Northern Ireland	Is it alright for others to e-mail you?: yes

Comments:
Quite a hisstory in my family of this disease.

03/25/99 15:42:19

Name: Gayle Bentley	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes - ok at the mo	What's your age/gender?: 26	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Lancashire, England	Is it alright for others to e-mail you?: YES

Comments:

03/25/99 01:00:49

Name: Mike	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes - both removed	What's your age/gender?: male/45	Are you on Dialysis/what kind?: home night-time HD
Do you have a kidney transplant?: waiting	What do you live? List state, area or country: Toronto, Ontario, Canada	Is it alright for others to e-mail you?: yes

Comments:
In hindsight, having the kidneys removed was the best thing I could have done. They were grossly enlarged and caused much discomfort. Although still a relatively new procedure in these cases, I had one of my kidneys removed laparoscopically (small incision surgey). I now am on "slow nocturnal hemodialysis" (SNHD) and could not recommend this method with more enthusiasm. If I can answer any questions, please feel free to write.

03/24/99 17:14:14

Name: Ryan anderson	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?: guy 15	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: St. John's, NFLD	Is it alright for others to e-mail you?: yeah

Comments:
Have fun!

03/23/99 13:18:19

Name: mark piucci	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: two thirds of both	What's your age/gender?: 44/male	Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: not yet	What do you live? List state, area or country: Arizona;phoenix	Is it alright for others to e-mail you?: yup

Comments:
need info on proper diet/validity of...

03/22/99 05:09:33

Name: Suzanne Hughes	My URL: Visit Me
My Email: Email Me	Do you have PKD? Approximately how much kidney function do you have?: I do not but, my father does
What do you live? List state, area or country: California	Is it alright for others to e-mail you?: yes

Comments:
My father was diagnosed with Polysistic Kidney Disease about 10 years ago. He is now 63 years old and they expect his kidney's to fail within a year. I have been tested and show now signs of PKD yet (I am 22). I have a lot of questions and I am happy t find this page. Thanks Suzanne Hughes

03/19/99 19:46:30

Name: Bob	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, 12% creatine 8.0	What's your age/gender?: 42/Male	Are you on Dialysis/what kind?: Hemodialysis
Do you have a kidney transplant?: On list	What do you live? List state, area or country: Indiana	Is it alright for others to e-mail you?: Yes

Comments:
I'm writing for my husband, Bob. We just found out about that he has this disease and we are in the end stages of it. He is only 42! How did we get to the end stages much quicker than some of the posts of I've read? We have a 12 year old daughter and 'm scared to death she has this, too. When can we haver her tested? Would an Ultrasound show up in her early age or would we need DNA testing? I know I'm asking lots of questions, but we are still in the "numbing" stage. All e-mails are welcome

03/18/99 23:45:05

Name: VERONICA AWAN	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: YES,I DO. I DON'T KNOW.	What's your age/gender?: 21Y.O. FEMALE.	Are you on Dialysis/what kind?: NO,I'M NOT.
Do you have a kidney transplant?: NO, I DON'T.	What do you live? List state, area or country: CALIFORNIA.	Is it alright for others to e-mail you?: YES.

Comments:
ONE OF MY FRIENDS TOLD ME THAT IN THE GENERAL HOSPITAL OF MEXICO, I CAN FIND INFORMATION ABOUT MY DISEASE BECAUSE MEXICO IS ONE OF THE COUNTRIES WHERE THERE IS MORE CASES OF PKD.MAYBE THESE INFORMATION CAN BE USEFUL FOR ANY OF YOU. I ALSO WANT TO KNOW IF IT IS POSSIBLE TO HAVE A SUCCESSFUL PREGNANCY WHEN YOU HAVE PKD? AND IN WHICH GRADE THIS CAN AFFECT THE HEALTH OF THE BABY?. THANKS FOR GIVE ME THE OPPORTUNITIE OF EXPRESS MY FEALINGS AND MY DOUBTS.

03/18/99 19:04:35

Name: Gail Hall	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: YES, NOT SURE OF FUNCTION	What's your age/gender?: 46 YEARS OLD/FEMALE	Are you on Dialysis/what kind?: NO
Do you have a kidney transplant?: NO	What do you live? List state, area or country: TENNESSEE	Is it alright for others to e-mail you?: YES, WOULD LOVE TO HEAR

Comments:
I'd love to hear from others with polycystic kidneys...how they cope, diets they use,symptoms we might have in common. . .anemia, parathyroidism, back pain, calcium imbalances, just comparing notes. I want all the information I can get to fight these complications. I'll be glad to share what I know.

03/18/99 16:10:13

Name: barun	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: almost normal	What's your age/gender?: 43 m	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: bombay	Is it alright for others to e-mail you?: yes

Comments:
please let us have some details on pkd. does it pass over from one generation to the next. how do we contain or keep it under control

03/18/99 12:45:19

Name: Nicole	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?: 31 - F	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, please do.

Comments:
I've just come home from a two week stay at the hospital because one of the cysts ruptured and I had a massive infection. PKD is not a well known illness and I'd like to share ideas for diets or therapies that could help. I hear that a soy protein diet an retard PKD. Does anyone know more?

03/18/99 02:31:06

Name: Jim Traufler	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?: 35/male	Are you on Dialysis/what kind?: yes/peritoneal
Do you have a kidney transplant?: no	What do you live? List state, area or country: Clayton, New York	Is it alright for others to e-mail you?: yes

Comments:
just logged on to talk and gather info from others, thanks

03/17/99 10:57:04

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

Comments:
I have polycystic kidney problems which was detected during my preganancy. I was having very high blood pressure during preganancy (170/110). In view of this I had to scissarian and had pre-termed baby of seven months old. Recently during ultra sound it was detected that my left kidney had three cysts; the largest one being of the size of about 4cm x 4cm. Similarly my right kidney is also affected by polycys. I am suffering from very high blood pressure inspite of consumpti n of anti-blood pressure medicines (although I do not take medicines on regular basis). I have come know that there is hardly any cure for this disease. I am only 28. Please advise. Yours faithfully, Indu

03/17/99 02:27:25

Name: Theresa Baker	My URL: Visit Me
My Email: Email Me	Do you have PKD? Approximately how much kidney function do you have?: no
What do you live? List state, area or country: Indiana	Is it alright for others to e-mail you?: yes

Comments:
I have three sisters with the disease.

03/16/99 23:36:16

Name: Brian Hatch	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: creatine - 4.5	What's your age/gender?: 49-male	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: vernon, ct.	Is it alright for others to e-mail you?: yes

Comments:
PKD has been in my family for sometime. My uncle and aunt have died due to complications from kidney disease. My mother's age 74 has it but has few problems. During the past year I have made visists to Dialysis center and to Transplant group for education My docter feels I will reach ESKD by the end of the summer. I have 1 cousin who just recently went on hemo dialysis. I've experience no pain (yet) but have had problems with infections.I been able to control my BP with medications (Novasc and Metoprolol) Anyone interested in sharing experiences I will respond.

03/16/99 20:09:52

Name: Tammy Steadman	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes Im b=not sure about function	What's your age/gender?: 33	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Michigan	Is it alright for others to e-mail you?: Yes

Comments:
I have bee diagnosed for 7 years, I have the mutant disease cannot trace PKD back to anybody.

03/16/99 17:55:58

Name: Susan Bailey	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 71%	What's your age/gender?: 46	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Alachua County, Florida

Comments:
I was recently diagnosed with PKD. It has normally affected my family in their later years 70's or later) I have absolutely no symptoms at the present time, but expect something each day. It amazes me how no cure or treatment has been found. My grandmother died of this disease 25 years ago at age 73. Has anything been done in the past quarter of a century? Obviously not, if there is still no treatment except dialysis or a kidney transplant.Please let me hear some good news about PKD research!!!

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