PKD Information Page (Main Page)

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09/25/00 16:34:50
Name: Ronnie Willis My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: dad does What's your age/gender?: 34m/his 57 Are you on Dialysis/what kind?: need any info for pkd
Where do you live? List state, area or country: SRQ, FL. USA Is it alright for others to e-mail you?: Yes

Comments:
Hello, My grandfather and oldest uncle both died of this disease. My father has just been diagnosed of it. I would like any info to be e-mailed to me at the address given:saranaz@juno.com This is located at the church where I attend. Thanks ever so much. For I A - Ronnie Willis


09/25/00 01:35:44
Name: Jennifer My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/had transplant What's your age/gender?: 23/female Are you on Dialysis/what kind?: no, never have been
Do you have a kidney transplant?: yes/ September 1999 Where do you live? List state, area or country: Illinois Is it alright for others to e-mail you?: Yes.

Comments:
I was born with PKD. Apparently my mother and father both carried the gene and did not know it. I have 2 sisters who neither one has this gene. I was the only one. I had no problems with my kidney, other than being on medication for hypertension, until ab ut 2 years ago. My creatinine and BUN started going up until I had to have a transplant. My sister donated a kidney and so far, it has been almost 1 year and I have been doing great. I would like to hear some stories from others about this disease and what the life expectancy is.


09/24/00 22:25:32
Name: Chris My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes 73% What's your age/gender?: 40 Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: Western Pennsylvania Is it alright for others to e-mail you?: Yes

Comments:
I am the coordinator of the PKR Foundation Pittsburgh Friends as well as a PKD patient. My 3 sisters and my teenage son also have PKD. We inherited PKD from my Mother who passed away 4 years ago. If anyone is interested in the Pittsburgh Friends group, please e-mail me. We are an active group who would love to have you join us!


09/24/00 15:35:14
Name: Kate Tee My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: PKD Full function What's your age/gender?: female 32years Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: southampton england Is it alright for others to e-mail you?: yes

Comments:
great site. I thoroughly enjoyed the message board and found it sad but also very useful to 'hear' from others with pkd


09/24/00 13:00:51
Name: davidhe does not know My URL: Visit Me Do you have PKD? Approximately how much kidney function do you have?: no/100%
Are you on Dialysis/what kind?: no Do you have a kidney transplant?: no Where do you live? List state, area or country: canada
Is it alright for others to e-mail you?: of course YES

Comments:
I need some information about one of my friend,s cosideration about selling one of his kidneys.unfortunately he would not change his mid. he has his own good reasons and problems. so, is there anyone who can giude him? he does not know that i will get hi some information online.please anyone give me some complete INFOS will help a lot.thanks


09/24/00 02:01:24
Name: linda smith 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?: 34 white female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: muskegon mich ,49425 usa Is it alright for others to e-mail you?: yes

Comments:
I'D LIKE TO FIND OUT ALL INFO ON WEIGHT LOSS WITH HAVING PKD I NEED TO LOSE WEIGHT.ID ALSO LIKE RECIPES AND MORE INFO ON SOY PROTEIN AND ABOUT FLUID ,WATER,WHAT IS BEST AND HOW MUCH DO I DRINK A DAY.


09/21/00 17:35:17
Name: Tracy 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?: 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: North Carolina

Comments:
My uncle was diagnosed with PKD over 10 years ago & his dr. suggested that all the family be checked because PKD is hereditary and when my mom died in 1991 from stomach cancer at the age of 39 I decided to get a complete check-up & that's when I found out I had PKD. I have 2 children and so far, the both seem to not have PKD but I don't know much about the disease at all. I'm trying to learn more about it, especially since my uncle is now on dialysis 3 times a week.


09/20/00 22:37:15
Name: J. Frierson 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?: 50/F Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: MD Is it alright for others to e-mail you?: Yes, but not excessively

Comments:
My daughter's baby was diagnosed with this disease in the womb. She carried the baby to term, but the baby lived only 23 hours; 21 hrs on a respirator. I wonder if any resources are available that would have helped my grandaughter to survive.


09/19/00 00:09:40
Name: loretta stammer My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: no/ my to sisters What's your age/gender?: im 52, they are 51 & 45 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Belleville, Illinois Is it alright for others to e-mail you?: yes

Comments:
My father, his two sisters and brother died of the pkd. I do not have it my two sisters have it and the tow of my cousins. the next generation, my on sisters children have it.


09/18/00 07:14:52
Name: leilani steyn My URL: Visit Me Do you have PKD? Approximately how much kidney function do you have?: yes100%
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: Johannessburg South Africa Is it alright for others to e-mail you?: no e-mail address

Comments:
I am a Pharmacy student at UPE (Port Elizabeth SA).My father died 2 weeks ago from pkd-he was 57. I believe we can beat this disease if more research is done. please contact me at : 12 Miller Street, Summerstrand, Port Elizabeth ,6001, South Africa. I will be doing a research project on the disease in 2001.


09/16/00 02:34:37
Name: kris 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?: 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: madison wi Is it alright for others to e-mail you?: yes

Comments:
A major complication of PKD in my family is brain aneurysm, besides of course kidney failure. Anybody else out there dealing with this brain issue?


09/16/00 00:34:52
Name: shelly My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: both What's your age/gender?: 44 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: ill Is it alright for others to e-mail you?: yes

Comments:
just very tired of pain and swelling and i don't want to trouble my family all of the time with my discomfort


09/15/00 22:52:04
Name: Joyce Lemarie My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, not sure yet, I was just diagnosed yesterday What's your age/gender?: 45/female Where do you live? List state, area or country: New York
Is it alright for others to e-mail you?: yes, please !!!!!!!!!!!!!!!

Comments:
My father had pkd, along with heart problems. He died 16 years ago. I'm a single parent with two sons, and I'm scared about what lies ahead. I'd be interested in joining a support group.


09/14/00 01:34:36
Name: LaToya My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: my infant son has it What's your age/gender?: he is 7 months old Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Florida Is it alright for others to e-mail you?: yes

Comments:
I want to learn all I can about PKD because my son was born with this disease.


09/14/00 01:20:55
Name: Robin Cotton 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?: female, 28 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: ontario, canada Is it alright for others to e-mail you?: yes

Comments:
My mother-in-law has pkd and I am looking up information because I am worried about my children's chances of getting it. Also I have problems getting information and my mum-in-law's doctors haven't told her diddley about what she can expect and about her chances at living pain free ever. I am terrified that my children will have to deal with that kind of pain later in life


09/10/00 00:37:36
Name: Janice Clark My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 25% What's your age/gender?: 60 Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: no Where do you live? List state, area or country: Kentucky Is it alright for others to e-mail you?: Yes please do

Comments:
I have had pkd for at least 15 years. In April I found out I only have 25% function left. I also have a son that about 3 years back was told he also has pkd. I retired tyhis year, now I find myself getting very depressed. Not knowing what the future holds I have kidney infections often that make me sick, I take so many medications for the infections. I also have the cysts in my liver,as far as I know they haven't given me any trouble.I would love to hear from others, Thank you. Janice


09/08/00 22:56:14
Name: hilary cook My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, all so far What's your age/gender?: female 50yrs Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: sanbernadino ca Is it alright for others to e-mail you?: yes

Comments:


09/08/00 05:04:13
Name: Denise My URL: Visit Me
My Email: Email Me Do you have PKD? Approximately how much kidney function do you have?: no
Is it alright for others to e-mail you?: yes

Comments:
My son has ARPKD.


09/08/00 02:19:25
Name: Laura My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: less than 40% What's your age/gender?: 68 F Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: ontario,canada Is it alright for others to e-mail you?: yes

Comments:
I learned that I have PKD a year ago. Neither parent had the disease. Father passed away at 95, Mother still living at 90. Saw specialist today and he is making arrangements for me to see dietician for a low protein diet. Page has been very helpful to understand disease. Have no pain, only found out I had PKD after many urinary infections and subsequent tests.


09/07/00 23:47:07
Name: RED My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Brother-in-law/Transplant Do you have a kidney transplant?: Yes Where do you live? List state, area or country: Kansas City KS area
Is it alright for others to e-mail you?: Yes

Comments:
At the end of his health ins. rope. Financially very tight & in need of help or info. Any funding? Health ins.? Wife is exhausted -- another job could do her in permanently. Any info. would be GREATLY appreciated ASAP. Thanks.


09/07/00 19:27:05
Name: Rick Lewis My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 20-30 % What's your age/gender?: 39 Where do you live? List state, area or country: Ontario, Canada
Is it alright for others to e-mail you?: yes

Comments:
lots of family pkd history. Thx. for the helpful board


09/06/00 02:08:56
Name: KIM BULLS My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: NO,FAMILY MEMBER DOES What's your age/gender?: 29 Are you on Dialysis/what kind?: NO
Do you have a kidney transplant?: NO Where do you live? List state, area or country: TEXAS Is it alright for others to e-mail you?: YES

Comments:
I WAS JUST LOOKING FOR A LITTLE MORE INFO. I HAVE LOTS OF QUESTIONS.


09/05/00 05:47:30
Name: Tony My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 45% Are you on Dialysis/what kind?: no Do you have a kidney transplant?: no
Where do you live? List state, area or country: Canberra Australia Is it alright for others to e-mail you?: yes

Comments:


09/05/00 02:45:19
Name: Barb My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, Creat is 2.4 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: Mississippi Is it alright for others to e-mail you?: Yes

Comments:
Diagnosed 1969, one cyst burst in 1970. In both kidneys and liver;No major problems but Creat & potassium keep rising;Family history, Dad & Brother died. Dad on dialysis 11 years, transplant 13 years;Brother on dialysis 1 year, died;Sister dialysis 2-3 ears, transplant 2 years ago; Looking for info on how to plot to determine when go on dialysis, plus what destroys the kidney function and what lifestyle choices I can make to continue to slow the progress.


09/01/00 16:41:34
Name: Dave Switzer 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: Kansas City, MO Is it alright for others to e-mail you?: Yes

Comments:
I am the Marketing/PR Director for the Polycystic Kidney Research Foundation. Our mission is to help fund research that will help find a treatment and cure for PKD. We are also dedicated to providing information about PKD to anyone who wants it. We can be contacted by calling (800) PKD-CURE or (816) 931-2600. My email address is daves@pkrfoundation.org If the Foundation can be of service, please let us know!


08/31/00 23:13:24
Name: Elizabeth R-L My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/maybe 100% still 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: Los Angeles, CA Is it alright for others to e-mail you?: yes

Comments:
I was just diagnosed with early stage PKD. My father died of kidney failure so long ago that I never even heard of PKD (but all his symptoms do match). I learned about it due to a kidney stone attack recently. I'm hoping to halt progression through ca eful diet - I'm already vegetarian. Does anybody know of any success stories? Has the disease ever reversed itself?


08/30/00 17:13:12
Name: Suzie Lettunich 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?: 31 / female Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: Seattle, WA Is it alright for others to e-mail you?: Yes

Comments:
I am co-coordinator of the Seattle Friends Group - a volunteer group that serves as an extenstion of the Polycystic Kidney Research Foundation. We are planning a meeting on Monday, Sept. 11 with speakers who will discuss the benefits of diet and nutrition. Please join us. For more information, email me at suzie@hlm.com.


08/30/00 12:49:21
Name: Valerie Jeffries My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes; at last check it was 35% but I think it is probably lower now What's your age/gender?: 47; 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: Tulsa Oklahoma,U.S.A Is it alright for others to e-mail you?: yes

Comments:
I see that the biggest complaint is pain. When I was diagnosed my dr. said that you don't get pain with PKD. He is not the only one that I have heard say this. How do we get the word out to health care professionals that this is a very common symptom and improve pain management?

ask the PKR Foundation to send you an info packet. It use to have a fact sheet that listed common symptoms including flank pain. Show it to your doc and try not to dance around and say "I told ya so". If the packet doesn't have it anymore, thier web si e talks about it too on this page http://www.pkdcure.org/lib/pkrp_pain.html#
You could print it off to show your doc too...beth


08/28/00 20:18:50
Name: Dorothy Barron My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 16% What's your age/gender?: 53 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Georgetown, Ky. Is it alright for others to e-mail you?: yes

Comments:
I would like to converse with others about PKD. I am getting ready to be signed up for a transplant and will probably have to go on dialysis before that. Let me hear from you, please.


08/26/00 23:10:21
Name: Lynn Olivier 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?: 53 Female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Maryland US Is it alright for others to e-mail you?: yes

Comments:
I am only just starting to have some pain and a lot of discomfort due to enlarging abdomen.




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