| Name: kitkatis2much | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: yes 60% |
| What's your age/gender?: 30 f | 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:
I was 28 years of age when i learned of my condition. I had no idea what the doctors were saying to me; thats pretty sad when I share the same exact diease with my father.Thats what happens when your parents divorce and you lose that bond with them. At an
rate,once I realized that this (PKD)was here to stay I started getting more information from my father and learned that PKD runs very strongly on my fathers side of the family. His mom passed away at age 38,his two sisters have the trait,but the majority
of his brother has the actual diease.A few of them has passed away. My father not only had an kidney transplant but an heart transplant as well as an result of the strain of the one remaining kidney.I have to say that he looks and sounds good! He no longe
has dialysis due to his surgery.I am very nervous about whats down the road, I look to my father as inspiration and hope because he has been through alot. I,m prety healthy and active right now but I also know within time that will change. It's nice to know that I'm not going through this alone; so if anyone want to write and give me some advice that will be nice. I dont know as of yet If I can be of any help to some of you because I'm still healing and educating myself but I'll try! God bless.
| Name: Carol | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Do not know | What's your age/gender?: 50 Female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Leicester. England. | Is it alright for others to e-mail you?: Yes |
Comments:
I found out quite by accident that I have PKD. I did not even know there was such a thing. I was frightened because no one could discuss it with me. No one to answer my questions. I have two grown up children. One would like to have a scan the other d
es not. I am having a problem keeping my BP down. I do not find the doctor very helpful.
| Name: Jan | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes I have PKD 80% left of kidney function | What's your age/gender?: Female age 39 | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Pennsylvania | Is it alright for others to e-mail you?: yes |
Comments:
My mother died of PKD 6 years ago. My two brothers and two sisters have it. My sister who is one year older than I had a transplant last year and is doing great. Her husband was the donor. My sisters and I were involved in a same sex sibling study at
he research center in Denver. We found this to be very informative and some what depressing. Overall we were happy that we got involved. We reget that we did not take a more active role in trying to get my mother to at least consider a transplant. I h
ve four children and of course worry about them. but with the research that is now being done I'm confident that there will be a cure.
| Name: Richelle | 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/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:
Does anyone take a drug for high blood presure called zestoril (lisinopril)?? I have been on it for over a year. Recently at night while trying to sleep I have wheezing in my chest. I do not have a cold. Could this be a side effect of the drug? ~~~~ Fathe
has pkd too. On transplant list.
| Name: Kerry Maidment | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 50% | What's your age/gender?: m 52 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Newcastle Australia | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Betty Bennett | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes-? labs normal | What's your age/gender?: 57years/frmale | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Washington state | Is it alright for others to e-mail you?: Yes |
Comments:
I have an extensive family history of ADPKD. Our family has been involved in research efforts since 1950. We have had many, many family members with PKD and so we have encountered most all symptoms of PKD. I have two sisters on hemo dailysis, one for 10 y
ars and one for 12 years.
I also have cousins on peritoneal dialysis.
| Name: jennifer | 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?: F/15 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: logan,oh | Is it alright for others to e-mail you?: YES |
Comments:
I need someone my own age to talk to. My friends
know i have pkd, they don't understand. PLease
e-mail m
| Name: Frank A Saunders | My URL: Visit Me |
| My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: not known yet |
Comments:
| Name: Marvin Arnold | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes 80% | What's your age/gender?: 47 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Missouri | Is it alright for others to e-mail you?: yes |
Comments:
Just found out I have it. So far doing well. I
inherited from my mother. She didnt know she had it until she was 70 yrs old she is now 75. Just want to keep up with newfindings and now just trying to keep blood pressure under control.
| Name: Jerri Gray | 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?: 47;female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Phoenix, AZ | Is it alright for others to e-mail you?: Yes |
Comments:
Myself, three sisters, and one niece have been diagnosed with PKD. We were all told several years ago not to worry about the cysts. However, recently two of us were hospitalized due to the pain, and wanting to find out more about the cysts brought us to
the PKDcure.org website. Talk about enlightenment! Now we understand why we are in pain all the time! I'm very interested in learning as much as I can about this disease, but I must ask that emails are limited to information only. Thanks! I wish you
all gentleness in your lifes!
| Name: Joshua | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: IGAN | What's your age/gender?: 13 Male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Lethbridge, Alberta, Canada | Is it alright for others to e-mail you?: ok |
Comments:
Please send me nice low salt recipies.
| Name: lise troldborg | 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/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Denmark | Is it alright for others to e-mail you?: yes |
Comments:
My father died on 28 April 2000 from PKD.
We are 4 sisters of whom 3 suffer from PKD.
| Name: Lesley Nunez | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: unknown, I think so my mother does. | What's your age/gender?: 32 year-old female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Fresno, California | Is it alright for others to e-mail you?: yes, please |
Comments:
I am a 32 year old female with a wide variety of symptoms the doctors cannot seem to figure out. I would like to converse with someone who is knowledgeable about kidney disease, in particular polycyctic kidney disease. Thank you.
| Name: Mark Biggs | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, approx. 80% kf | What's your age/gender?: 40 M | Are you on Dialysis/what kind?: No yet |
| Do you have a kidney transplant?: Not yet | Where do you live? List state, area or country: Ohio, northeastern | Is it alright for others to e-mail you?: Yes |
Comments:
I would be interested in contacting others of approximately the same age as me who have PKD.
| Name: Ky'a N Wheeler | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no, my nephew does | What's your age/gender?: 21/female/my nephew is 7 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: I live in springfield,MO/ he lives in Lexington, KY | Is it alright for others to e-mail you?: yes please do |
Comments:
This sign on is for my nephew who is now 7 years old. He was diagnosed at the age of 4 with the disease. We were told it was a miracle that he is still with us,because they said that most die within the first year or two. I am trying to get enough infor
ation about the disease to help my nephew and to also write a book about PKD. If anyone can help me it would mean so much. thank you.
| Name: CAthy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no/need infor for friend | What's your age/gender?: male/40yrs old | 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:
Im seaching informaiton for a friend who lives
outside this country. Need information on diet
and up-dated medical treatments.
Thank You so much for your help
Cathy
| Name: owen | 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?: 36 m | Are you on Dialysis/what kind?: yes heamodialysis |
| Do you have a kidney transplant?: not yet | Where do you live? List state, area or country: dublin ireland | Is it alright for others to e-mail you?: yes |
Comments:
i have known about my condition for a long time but i still was'nt prepared for the life change of dialysis i am now in my third week i would be interested to hear from transplant recipients
slainte
| Name: coleen davidson | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: pkd | What's your age/gender?: 92% | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no brain anursym | Where do you live? List state, area or country: Alberta canada | Is it alright for others to e-mail you?: yes |
Comments:
I recently had a bladder infection which resulted in severly painful spasms everytime I urinated. has anyone with PKD
experienced this?
| Name: Angie Jacobs | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, 50% | What's your age/gender?: 35/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Virginia | Is it alright for others to e-mail you?: yes |
Comments:
I just recently won disability and it was a hard
process considering that so many do not understand
the disease. I feel very alone since everyone seems to think that it is just a disease that effects older folks. I just found your site and I'm grateful to finally find others that understand. I live in constant pain and its hard when you feel like you're all alone. Now I know I'm not.
Thanks, Angie
| Name: Kalina Silva | 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?: 33 years. Fem. | Are you on Dialysis/what kind?: No. |
| Do you have a kidney transplant?: No. | Where do you live? List state, area or country: Rio de Janeiro, BRAZIL. | Is it alright for others to e-mail you?: Yes. In Portuguese, please. |
Comments:
I just read and speak Portuguese.
| Name: Greg Madrigal | 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?: 42/Male | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Ca, San Luis Obispo | Is it alright for others to e-mail you?: Yes |
Comments:
My Mother had PKD and past away last year at the age of 75 after 17 years on dialysis. I have one cousin who has had a transplant,now has diabetis -otherwise,she is doing well. I have several cousins with the desease with various symptoms. I have 5 sibl
ngs, 2 others have been diagnosed with PKD, 2 without and 1 undiagnosed. 4yrs. ago I had 2 veins break in my head, never could diagnose aneurysms. Was diagnosed as venious malformations. Since then I have been on Blood pressure medicine. I have learned a
ot about PKD and research from the PKD foundation. They have a website, I think it is PKDfoundation.com. Anyway, would like to talk with others who live with this desease.
| Name: Lisa Chadwell | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes/ Full at this time | What's your age/gender?: 46/ Female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Alaska/U.S.A. |
Comments:
I was diagnosed officially this year. But was told that it is a double mutated gene..I do hope that they are real close to a cure...I really do not want to do the Dialysis thing..My Aunt did and was in a lot of pain from it...Both my kidneys have cysts on
hem..scary thing this disease..
| Name: Tiger1 | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: a little | What's your age/gender?: 45 | Are you on Dialysis/what kind?: yes, hemo |
| Do you have a kidney transplant?: yes, and failed | Where do you live? List state, area or country: New Jersey | Is it alright for others to e-mail you?: yes |
Comments:
I would like to talk to any one about hemo-or
peritonel dialysis.
I am an amputee, on dialysis and I have diabetes.
I've been on dialysis since August,11,1995.
If anyone who wants to chat, just e-mail me and
I will chat back!! Peace!!!
| Name: Jennifer Taylor | 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?: 27, Female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: NV,Elko | Is it alright for others to e-mail you?: yes |
Comments:
I was dignosed in August of 1999. My father has it and he won't talk about it.I have had a grandfather and a uncle that has passed away from PKD. I need someone to talk to. I have no doctor here that are qaulified to deal with this,and i have no insurance
Do you have any ideas or suggestions. Please E-Mail,I need someone to chat with.
| Name: Charles Bachert | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, 5% | What's your age/gender?: 42,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: PA, Northeaetern | Is it alright for others to e-mail you?: yes |
Comments:
I enjoy looking at your site, because I can get information about my disease.
| Name: Valarie Hodge | 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?: 36/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Southeast Arkansas | Is it alright for others to e-mail you?: yes |
Comments:
PKD comes from my mother's side of the family. I was diagnosed when I was 18. Have not had any problems until recently. I've noticed my left side getting really big and somewhat painful. My blood pressure is beginning to be a problem, but I am not on
ny medication now. My mother and two of her sisters have the disease. I have lost a granmother and great-grandfather to the PKD. My mom also has Lupus. She has cysts on both kidneys and liver. I need any input on how to help keep this under control.
I have two daughters and both were tested by ultrasound at birth and nothing showed up. I pray for a cure soon because of those two wonderful girls.
| Name: Debra Sinclair | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, too early to know | 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: Ontario, Canada | Is it alright for others to e-mail you?: yes |
Comments:
I have only recently been told I have polycystic kidneys (found by accident as an ultrasonography student). I don't have my appointment with a specialist until August 31st. My mother and father both have been told they have normal kidneys. I am getting
conflicting stories about the disorder and am very frustrated that my age has made people tell me to not worry about it until later. I want to know if there is anything I can do about it now.