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PKD Information Page (Main Page)
| Name: RON RICCI | 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?: male, 51 years | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: maine | Is it alright for others to e-mail you?: yes |
Comments:
Dr Steinman my MD in Boston has left his practice and I am looking for MD in Boston area.....
| Name: Karen | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, good function | What's your age/gender?: 37yrs | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Toronto, Canada | Is it alright for others to e-mail you?: yes |
Comments:
I have a long family history of PKD. My father has had a transplant.
| Name: Mirna Rivas | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: not much |
| 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: Richmond Virginia |
Comments:
my adress is 119 emberwood ct richmond va 23223
| Name: Rudolph V. Bianco | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, I do have PKD and I don't know kidney fuction yet, I have just been diagnosed. | What's your age/gender?: 44 male | 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:
My husband Rudy has just been diagnosed with PKD. His father died from the disease in his late 30's. He also has one younger brother who was diagnosed with PKD about 5 years ago when he was in his early 30's. We didn't think Rudy had the disease because he had never had any symptons indicating such. At our peditricians, request we had one of our children checked via sonogram. She was negative, therefore they assumed Rudy was also negative. About a month ago Rudy started having blood in the urine. His blood pressure was sky high, and has since been put on medicine to control it. The doctors are assuming the high blood pressure put a strain on the kidneys causing the blood in the urine. As a result to all this a sonogram was preformed on Rudy and ultimatly showing the PKD. This is all the information we know at this time. We are being refered to a specialist next month because the kidney function test was not normal.
Does this sound familiar to anyone out there?
Thank you,
| Name: Cenida | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: No | Are you on Dialysis/what kind?: No | Do you have a kidney transplant?: No |
| Where do you live? List state, area or country: St. Thomas, VI | Is it alright for others to e-mail you?: Yes |
Comments:
Hi,
I do not have polycystic kidney disease. However about two and a half years ago my new born baby died after 10 hours in the hospital. Later I found out that he had polycystic kidney disease.
Ever since his death I have been interested about this disease. I am aware that polycystic kidney disease is inhereted and I am afarid to get pregnant again. To my knowledge I do not know any of my family members or husbands family with kidney problems.
My mother however is presently on dialysis due a high blood pressure, diabetis and other complications. I would like to know more about this disease and other parents who have lost a child preferably a newborn due to this disease. I would also like to
now if parents can be tested to see if the disease runs either between the wife or the husband.
| Name: shane | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no I don't but my dad does | What's your age/gender?: 10 years of age/male | Are you on Dialysis/what kind?: my dad is |
| Do you have a kidney transplant?: no of coarse not | Where do you live? List state, area or country: colorado/usa | Is it alright for others to e-mail you?: no |
Comments:
can you help me?I am worried a lot of my life that something will happen
| Name: michelle | 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?: 32-f | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: indiana | Is it alright for others to e-mail you?: yes |
Comments:
3 years ago I found out I had PKD. my mother and uncle have had transplants. Another aunt and a cousin found out recently. It's comforting to know that we aren't alone. if any one has any new info please e-mail me. I have also had conflicting answers of protein intake and caffeine intake. take care.
| Name: Jodi Sanborn | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no, but most of my family does | What's your age/gender?: 21/F | Where do you live? List state, area or country: N.H. |
| Is it alright for others to e-mail you?: yes |
Comments:
I just found out my brother has PKD. My Mother, Aunt, Uncle, and Grandfather either have it or have passed away from it. Please send me any info.
| Name: sandra | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: yes, 90% |
| What's your age/gender?: 37/F | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: TX | Is it alright for others to e-mail you?: yes,please do |
Comments:
I was diagnosed 10 years ago problems encountered have been reoccurring, uti, with back pain, seem to have no energy any more always fatigued. Dr. doesn't seem to have a clue surely there is more to do than just wait for fate. Mother had pkd and past 2 years after transplant. It's really frustrating to not know if you'll ever be able to hold your grand babies. I would really like to know about the cure if it's a fluke or not. Any information would be appreciated.Thanx!!!!
| Name: Michelle Singerline/Woodward | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: their still functioning ok. | What's your age/gender?: 25 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: New Jersey | Is it alright for others to e-mail you?: Yes |
Comments:
Everybody on my mom side has this disease. It's very scary,and sometimes very lonely.
| Name: Josh | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes - 95% | What's your age/gender?: 8 yrs old, boy | Where do you live? List state, area or country: Kansas City |
| Is it alright for others to e-mail you?: yes! |
Comments:
I was diagnosed with PKD before I was born, with an ultrasound. Grandpa had it, mom has it, and so do I. I am a research subject for this disease, so I know all about it. I take blood pressure medicine and have since I was 3 months old. I want other kids to lnow it's O.K. to have PKD. You can still have fun. I play football and everything. My friends know, and they don't care. If any kids (or moms and dads,) want to talk to me, please e-mail me, I'd love to talk to you!
| Name: Steph | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: My son and I both have ADPKD. | What's your age/gender?: We are 29, and 8. | Where do you live? List state, area or country: K.C. |
| Is it alright for others to e-mail you?: yes |
Comments:
I would like to talk with anyone who has had cyst drainage or other surgical treatments for pain. I can not find a doctor who is willing to talk to me about this. Thanks!
| Name: RANDY | 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?: 39MALE | Are you on Dialysis/what kind?: SOON |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: TOLEDO,OHIO | Is it alright for others to e-mail you?: YES |
Comments:
MARRIED/HAVE 3 CHILDREN 16, 13, 11. HAVE KNOWN I HAVE PKD SINCE 18 YRS. OLD. WOULD NOT CHANGE FAMILY STATUS EVEN KNOWING THIS. GRANDMOTHER PASSED FROM PKD, MY MOTHER (57) JUST HAD DOUBLE KIDNEY REMOVAL OF LARGE/PAINFUL OF NATURAL KIDNEYS. MOTHER HAD TRANSPLANT 2 YEARS AGO THAT HAS WORKED GREAT. UNCLE, COUSINS AND TWO SISTERS HAVE PKD.
| Name: Cheryl | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, full-functioning for now | What's your age/gender?: female - 27 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Nova Scotia, Canada | Is it alright for others to e-mail you?: yes, please do. |
Comments:
I can't begin to tell you how wonderful it was to find your site! I was disgnosed just recently when I underwent tests for other reasons. I was adopted so I know nothing of my family medical
history on my father's side (no one in my mother's family has it.) I know of no one else with this disease and have felt very much alone until now.
I was also very excited to see that someone else who signed the guestbook mentioned that they heard a cure had been found. A friend told me that she heard Dr. Gabe Merkin, on the radio, talk about a cure which was found recently. I have been trying
to find out more but have been unsuccessful and was starting to think she had been mistaken. I have hope again that there is some news
| Name: hasiak | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes - so far no deterioration of kidney function (I think) | What's your age/gender?: female - 43 | 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?: yes |
Comments:
I was diagnosed about 12 years ago and over the last few years am beginning to develop more frequent pain and enlarged kidneys. I am interested to learn any new developments in treating symptoms and/or progression of this disease.
| Name: gary thompsen | 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?: male/46 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: yes | Where do you live? List state, area or country: florida/new port richey | Is it alright for others to e-mail you?: yes |
Comments:
my wife gave me a kidney in November 1996 and I am doing great
| Name: Lyn Kaiser | 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: San Diego, CA | Is it alright for others to e-mail you?: yes, please do |
Comments:
Thanks for the research you've done and for posting it for the rest of us to use. I am the only one in my family with PKD, and am asymptomatic. I am looking for others like me, and for new information as it becomes available.
Thanks!
| Name: Monica | 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?: 19 | 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?: yes |
Comments:
My grandmother has a friend with this disease and I told her I'd do some checking up for her. This is because my grandma was listening to a radio show the other night and a Doctor siad that a week ago a cure was found for polycystics. She thought she heard wrong but yet again he said it. Then the next night she got her husband to listen and he too said that this doctor stated that a cure was found. Is this True I would really like to know and so would my Grandma's friend. If anyone has any information PLEASE contact me. Thanks Monica
| Name: Ravi Kambhoj | 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?: 32/male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: India/Mumbai | Is it alright for others to e-mail you?: yes |
Comments:
I would realy be intrested to interact with anybody suffering from PFD.
| Name: LIZ MC GARVEY | 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?: FEMALE/43 | Are you on Dialysis/what kind?: NO |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: PHILA. PA. | Is it alright for others to e-mail you?: YES |
Comments:
| Name: MIKE MOORE | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes...only 30% left | What's your age/gender?: male......45 | Are you on Dialysis/what kind?: will be very soon |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: birmingham alabama | Is it alright for others to e-mail you?: yes |
Comments:
nothing much to say ....if you understand what I mean
| Name: Diana Plinski | 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?: 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: Virginia | Is it alright for others to e-mail you?: yes |
Comments:
looking for a local support group
| Name: Julie Hayes | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: I have PKD, and am now on a dialysis machine. | What's your age/gender?: Female, 46 yrs. | Are you on Dialysis/what kind?: hemo |
| Do you have a kidney transplant?: I am on the waiting list | Where do you live? List state, area or country: Cambridge, Ohio, U.S.A. | Is it alright for others to e-mail you?: Yes, I can give very insightful information on this disease. |
Comments:
My grandfather died with this disease, and my father and uncle also died while on dialysis machines. My two aunts have had transplants, and my sister has also had one. I am on a waiting list, and my daughter has the disease. I had one kidney removed and the PKD foundation took it for research. I thought dialysis was the absolute end, but I have since found out it is only the beginning. End-stage renal disease is such an awful name for kidney failure. It sounds like you will die no matter what you do.
I have discovered that being on this dialysis machine is the best thing that has ever happened to me. I used to have so much pain that I could not function. Now I have so much energy that I have gone back to school, and have a 3.7 GPA. I look on the dialysis as a stopping point, until I can receive a new kidney. The kidney that was removed was 22 lbs, and was very bad. It gave me infection after infection, and in the end, it almost made me bleed to death. The other kidney didn't work. That is how I ended up on the machine. To me, that machine and my Dr. and nurses are a Godsend, and I thank God every day for letting me get on with my life.
| Name: Elizabeth Harmon | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, 100% as far as I know. | What's your age/gender?: 25, female | 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, AR | Is it alright for others to e-mail you?: YES |
Comments:
| Name: Martha | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, Very High | What's your age/gender?: 39 Female | 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:
2 of my 3 sisters have PKD so we have a 75% incidence in our family. All are doing very well now.
One sister with PKD had PKU(phenlyketonuria, a recessive genetic disease. Has anyone else come accross this? She has never eaten protein and was the first of us to experience pain from the cysts.
| Name: Tiernan Leahy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes. I have about 40% function. | What's your age/gender?: 33 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?: Absolutely |
Comments:
I was diagnosed at 16. I was training for the Olympics and began having severe headaches (later determined to be BP related). Tests revealed one nonfunctioning kidney and the cycts had already spread to the other one. I believed that it skipped generat
ons. Am I wrong? Am I now understanding that I have a good chance of passing this along to my children if I am so blessed with them?
| Name: Tracy Ireland | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, i do. im not sure.. most of it | What's your age/gender?: 15/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Vacaville, CA | Is it alright for others to e-mail you?: yes |
Comments:
Hi. As my dad already told you, we have PKD> I am 15 years old, and I found out about a year and a half ago when I had severe migraines... Well, I had already had them for a year, and so my doctor decided to take a peek at my kidneys with an ultrasound. T
ere were already a few cysts on my kidneys. I've learned to deal with it, and if there is anyone out there who needs someone to talk to, you can e-mail me, and I'll listen.
Chers for your time!
-Tracy (Spoon)
| Name: Ron Ireland | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 75% | What's your age/gender?: 45 Male | Are you on Dialysis/what kind?: NO |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: Vacaville, CA | Is it alright for others to e-mail you?: Yes |
Comments:
I was diagnosed 10 years ago. My Father, Uncle, and Grandmother have died from this disease. One of my three kids has it also. I watch my blood pressure and have complete physical every 6 months or so. Many liver cysts as well. Back pain is the hardest
to deal with. This is a good site - I appreciate knowing I'm not in this alone.