PKD Information Page (Main Page)

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05/10/00 20:18:27
Name: David My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes/40-50% 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: East Arkansas Is it alright for others to e-mail you?: Yes

Comments:
Diagnosed at 24 because of hypertension and hematuria. In the last 5 years, I have had occasional flank pain, large increase in size of abdomen, and occasional hematuria. Do not know who else in my family has/had it.


05/10/00 14:23:48
Name: Chris Cottrell 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?: 40 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 West UK Is it alright for others to e-mail you?: Yes

Comments:
I've been diagnosed for 12 months and was well for most of the last year. My initial diagnosis followed a kidney infection and I have had a low grade infection for the last few weeks. It's taken 3 courses of antibiotic treatment and it's still there. I a interested in understanding other peoples experience of pain and pain management. I have deliberately avoided taking anything for anything since I was diagnosed, its a real drag when you get a cold. I am experiencing more back pain now and assume its the infection. What have you experienced?


05/09/00 18:15:56
Name: Ben Baldwin 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?: 34 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Little Rock, Arkansas Is it alright for others to e-mail you?: Yes

Comments:


05/09/00 10:15:54
Name: Tom Timlin My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, just diagnosed. What's your age/gender?: 49 Male Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: Petersburg, Ohio Is it alright for others to e-mail you?: Yes

Comments:
I'm just learning about PDK and don't know enough to comment yet.


05/06/00 09:51:55
Name: Rose Marie Williams 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?: F/58 Are you on Dialysis/what kind?: No/CAPD when I was
Do you have a kidney transplant?: Yes Where do you live? List state, area or country: Pa Is it alright for others to e-mail you?: Yes

Comments:


05/06/00 00:08:55
Name: Cynthia J Scott My Email: Email Me Do you have PKD? Approximately how much kidney function do you have?: I think so. My father has it and I am getting the symptoms he had.
What's your age/gender?: 20/F Are you on Dialysis/what kind?: No Do you have a kidney transplant?: No
Is it alright for others to e-mail you?: yes

Comments:
I would really like some info on PKD and what others symptoms have been.


05/05/00 19:20:57
Name: Theresa Anderson 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?: 62 female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Pittsburg,Calif. Is it alright for others to e-mail you?: yes

Comments:
I would like to get some feed back on Policystic


05/05/00 06:20:43
Name: Ursula Gray My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes in both kidneys. At the moment they seem to be functioning properly although I am getting signs - high blood pressure, frequency urination, headaches, back pains et . What's your age/gender?: female Are you on Dialysis/what kind?: Not at the moment
Do you have a kidney transplant?: No Where do you live? List state, area or country: England Is it alright for others to e-mail you?: Yes

Comments:
I am very worried. I actually have Polycystic Disease of the Kidneys and Liver as well. My liver cysts have almost completely taken over although it seems to still function properly. My kidney cysts are starting to give problems. Anyone with these problem I would like to share views to help, perhaps, slow down progression if possible


05/01/00 03:14:35
Name: Cindy My URL: Visit Me My Email: Email Me
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: GA Is it alright for others to e-mail you?: yes

Comments:
My grandmother passed it to my father, who passed it to my brother and sister. I haven't been checked lately, so I don't know if I have it yet.


04/30/00 19:26:26
Name: toby My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 15% What's your age/gender?: Female, 55 Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: no Where do you live? List state, area or country: Connecticut Is it alright for others to e-mail you?: yes

Comments:
I am going to have the operation to ceate a shunt on May 31. I was diagnosed 11 years ago. There does not seem to be any history of PKD in my family.


04/29/00 23:58:04
Name: Karman L Krein My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, so far all of it, but not expected to be very long for limited use. 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: Wheatland, Wyoming, U.S.A Is it alright for others to e-mail you?: yes

Comments:


04/29/00 13:22:49
Name: Lori Sheeks My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 35% 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: ohio Is it alright for others to e-mail you?: yes

Comments:
Looking for new friends.


04/28/00 22:27:50
Name: Richard Tan My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/no idea What's your age/gender?: 30/m Are you on Dialysis/what kind?: yes/na
Do you have a kidney transplant?: no Where do you live? List state, area or country: singapore Is it alright for others to e-mail you?: ok

Comments:


04/28/00 13:33:59
Name: Louise My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes. Approx.20% What's your age/gender?: 49 (no, really) F Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Hampshire, England Is it alright for others to e-mail you?: yes

Comments:
PKD has come down my mother's side of the family. I have been told to expect renal failure in 2 to 5 year's time. I also have cysts in my liver. My sister had a transplant nearly 14 years ago.


04/26/00 14:47:31
Name: Ffiona My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: my boyfriend has, just had scan to determine function What's your age/gender?: 19/f Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: London, England Is it alright for others to e-mail you?: Yes

Comments:
He was first diagnosed 20 years ago, but told it wasn't serious. He has recently been told differently. Any advice to help me help him would be appreciated


04/21/00 23:44:34
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?: yes
Where do you live? List state, area or country: pa Is it alright for others to e-mail you?: yes

Comments:
be glad to answer any question


04/21/00 19:09:01
Name: Brenda Adekeye c/o Janis Burl 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?: 49 / female Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: no Where do you live? List state, area or country: Atlanta, Ga. Is it alright for others to e-mail you?: yes

Comments:
My sister has PKD. she has not started Dialysis yet but may start any day. We would like all info that you can give us about what the future may hold (your experiences). Thanks, Janis


04/19/00 14:54:32
Name: Donna Wilmes My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes unknown at this time What's your age/gender?: 34 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Alexandria, Kentucky Is it alright for others to e-mail you?: yes

Comments:


04/19/00 11:34:24
Name: Alicia Ammons My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: new diagnosis 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: Alabama Is it alright for others to e-mail you?: yes

Comments:
I am 24. I was just diagnosed in Dec. I am looking for advice on just about all topics. I am already having early renal failure sx. Thanks!


04/18/00 16:50:12
Name: Donna Wilmes My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes and I am not sure at this time What's your age/gender?: 34 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Alexandria, Kentucky Is it alright for others to e-mail you?: yes

Comments:


04/17/00 01:48:10
Name: Bill Flynn 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?: 60 Male Are you on Dialysis/what kind?: Yes Hemo
Do you have a kidney transplant?: No Where do you live? List state, area or country: Cape Coral, Fl Is it alright for others to e-mail you?: Yes

Comments:
Ive been on hemodialysis for 12 years. Six years ago, I was diagnosed with Dialysis related amyloid, and have since suffered with moderate to severe pain. Where can I get info on Amyloidosis, such as symptoms, etc.


04/16/00 23:23:21
Name: Dave Koskey 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?: 46 male Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Wisconsin Is it alright for others to e-mail you?: yes

Comments:


04/16/00 22:56:07
Name: CINDY 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 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: EDMOND, OKLAHOMA Is it alright for others to e-mail you?: yes

Comments:


04/16/00 21:24:11
Name: GEORGE ALCOTT My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: YES 57%R 43%L 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: FL. USA Is it alright for others to e-mail you?: YES

Comments:


04/16/00 16:54:03
Name: Miss N A Adams 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?: 29 Female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Essex, England Is it alright for others to e-mail you?: yes

Comments:


04/16/00 16:48:43
Name: Alan My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, and according to my doctor, I'm down to about 74% What's your age/gender?: 41 and male 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 family on my mother's side has a long history of PKD. Her father died from it, as well as several of his siblings. My mother has PKD, and so do three of her sisters. Apparently, three other sisters do not have PKD, and her brother has yet to be tested or it. the three sisters that have PKD received kidney transplants and are doing well. My mother was not so fortunate. After her transplant, her apendix ruptured, causing her to reject. She was a pioneer recipent of CAPD in the late '70s- early '80s, and ince her rejection, she has been a hemo patient. I was diagnosed about six years ago. I'm a father of two children, and they have not yet been tested.


04/16/00 00:38:59
Name: Kelly My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, I don't know, just diagnosed and getting blood test on Monday 4/17 What's your age/gender?: 32/female 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

Comments:
My father died of PKD in 1993 and I just found out that I also have it at age 32. I am the mother of 4 very young children and have no idea what this all means to me!


04/15/00 19:48:22
Name: kimala 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?: 20 female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Marion,Alabama Is it alright for others to e-mail you?: yes

Comments:
I found out I had PKD about 2 years ago. I have one child I don't know if she has it or not.


04/15/00 19:27:06
Name: Tara Coleman My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: i have not been tested yet What's your age/gender?: 21/ female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: northern california Is it alright for others to e-mail you?: yes

Comments:
My father, aunt and grandmother have PKD. My grandmother passed away at 56 from complications. My father will need a transplant because he refuses dialysis because of my grandmothers pain and suffering on it. I would like info. on any kind of special d et that there might be. Thanks, Tara


04/14/00 16:03:17
Name: Shannon Griffin My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes...just found out..not sure yet What's your age/gender?: 24/f Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Kansas Is it alright for others to e-mail you?: yes

Comments:
new to all this...trying to find information or anything I can...my doctor doesn't have a very pleasing bedside manner to where I feel comfortable talking to him... If anyone feels like talking...write me


04/14/00 01:06:25
Name: suzieq My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes also pld 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: canton ohio,44710 Is it alright for others to e-mail you?: yes

Comments:
site has helped me alot looking forward for more information.


04/13/00 01:39:24
Name: Tana My URL: Visit Me
My Email: Email Me Do you have PKD? Approximately how much kidney function do you have?: my children do
Where do you live? List state, area or country: North Dakota Is it alright for others to e-mail you?: yes

Comments:


04/12/00 09:32:07
Name: ishan My Email: Email Me Do you have PKD? Approximately how much kidney function do you have?: yes
What's your age/gender?: 6 years Are you on Dialysis/what kind?: no Do you have a kidney transplant?: no
Where do you live? List state, area or country: india Is it alright for others to e-mail you?: yes

Comments:




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