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
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.
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!
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
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
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.
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.
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.
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.
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.
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?
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
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.
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.
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
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
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:
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.
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.
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.
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
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.
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:
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.
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!
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?
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.
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
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.
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.