02/11/00 04:06:11
| Name: STEVE | 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?: 36 male | Are you on Dialysis/what kind?: NO |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: MASSACHUSETTS | Is it alright for others to e-mail you?: YES |
Comments:
I WAS DIAGNOSED WITH PKD AT AGE 21.DOCTOR'S TELL
ME MY HIGH BLOOD PRESSURE IS CAUSED FROM THIS.
I TAKE 2 MEDICATION'S, VERAPAMIL + ZESTRIL.
ALL THEY TELL ME IS TO KEEP MY BP UNDER CONTROL
AND MAYBE MY KYDNEYS WON'T BECOME A PROBLEM.
I HAVE A BLOOD TEST AND A URINALYSIS DONE EVERY
6 MONTHS.
WHAT ARE MY CHANCES OF HAVING A PROBLEM?
ARE THERE CERTAIN FOODS I SHOUD EAT AND STAY
AWAY FROM?
| Name: Angie | 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?: Female 31yrs old | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Melb. Aust. | Is it alright for others to e-mail you?: yes. |
Comments:
I was diagnosed with PKD at the age of 20 due to slightly raised blood pressure. It's always interesting to chat to others with the same condition or who have family with the disease.
| Name: mark t piucci | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: two-thirds | What's your age/gender?: 45 | Are you on Dialysis/what kind?: not yet |
| Do you have a kidney transplant?: not yet | Where do you live? List state, area or country: Arizona;Maricopa county | Is it alright for others to e-mail you?: Yup |
Comments:
I need information,not junk mail
| Name: Mike O' Grady | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes. Fine for now. | What's your age/gender?: Male, 43 | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Dorset in England | Is it alright for others to e-mail you?: Yes |
Comments:
I am beginning to suffer with what seem to be side effects and this is making me rather apprehensive. Hypertension and most recently gout. I thought only old people got gout. Guess I'm not as young as I thought.
I'd like to here from anybody with general advice or information that would cheer me up. The bad news I can make up myself no problem.
| Name: Marcia Cunningham | 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?: 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: hazleton,PA | Is it alright for others to e-mail you?: yes |
Comments:
I'm a 25yr. old female with PKD. I have had this since I am 9yrs. old . I have been going through a great deal this past year and it's only been getting worse.I have a lot of knowledge about this disease since I've been dealing with it for a long time and
it runs through my family.If anyone has any questions or just needs a friend e-mail me I would be happy to hear from you.......
| Name: Sue Chandler | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no, husband has | 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: Florida | Is it alright for others to e-mail you?: yes |
Comments:
Thanks for your resource page. We have just discovered my husband's PKD, and would like information on diet and exercise. The doctors in our area are overworked, and we have been put off continually in trying to get information and/or appointments.
| Name: Pat | 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?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Washington | Is it alright for others to e-mail you?: Yes |
Comments:
My mother and grandmother died of complications from PKD. I have cousins,siblings and children who have been diagnosed with PKD as well, so I am very interested in current research which gives us all some hope. I have PKD and severe PLD. So far hypertens
on and fatigue are the main problems with the PKD, but I would like to hear from anyone who also has problems related to the Polycystic Liver. This seems to be more rare, but is a real problem for me. I can't be the only one with this complication.
| Name: Chris | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: my husband has PKD | What's your age/gender?: 29, f | Are you on Dialysis/what kind?: no, his only symptom is high blood pressure at this point |
| Where do you live? List state, area or country: Cleveland, OH | Is it alright for others to e-mail you?: yes |
Comments:
My husband was diagnosed with PKD in his early 20's. His father struggled with it and passed on when my husband was a teenager. I am beginning the phases of getting educated. It is so scary. I was so very encouraged about a recent article in USA today
a couple of weeks ago about an aggressive medication treatment. I, too, am hopeful for a cure and am looking for ways to cope with the information until that cure comes.
| Name: STAN A STARKS | 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?: 50-Male | Do you have a kidney transplant?: YES |
| Where do you live? List state, area or country: FRESNO,CA | Is it alright for others to e-mail you?: YES |
Comments:
MY KIDNEYS WERE REMOVED. THEY WERE 45 pounds.(IN 97).
| Name: Chantelle | 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?: 26/F | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Hawaii | Is it alright for others to e-mail you?: Okay |
Comments:
My 9 yr old son was just diagnosed with PKD and I am going crazy. More information on PKD for younger children would be helpful. It would really help me out knowing exactly what my child is going to have to bear in the coming years and ways that I can hel
him. It's extremely frightening! I also have to monitor my other 2 children. They inherited it from their father. If anyone can help me please do!
| Name: Kevin Woolums | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 70% | What's your age/gender?: 33 | Are you on Dialysis/what kind?: N/A |
| Do you have a kidney transplant?: N/A | Where do you live? List state, area or country: Round Lake Il | Is it alright for others to e-mail you?: yes |
Comments:
I was 23 when i found out i have Pkd i was crushed not just for me but my mom I had to tell her that i have it (pkd) also her worst fear is that one of her kids might have it she had Pkd kidneys and live she has had a transplant 12-99 and all is very good
now. but a very long road it has been I myself and not looking forword to this i guess we have to wait this one out and see what happens in researh.
Thanks, kevin
| Name: Steve | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes- 35% | What's your age/gender?: 39 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Gaylord, Mich | Is it alright for others to e-mail you?: yes |
Comments:
I would like to converse with others with funtion below 35%, Also would like to share with others, regarding symptoms. I found out at 22, I have 5 brothers and sisters. No one else in entire family has pkd. I have alot of pain in flanks and extreme fatiqu
at times. I feel a cure is coming soon! God Bless!
| Name: dr foose ( charles) | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 75-80% | What's your age/gender?: male/ 42 | 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:
Pkd is very heavy in my family. Father had it and was a sucessful transplant in the early 70's lived 18 years after. 5 of his 10 siblings have it and his uncle's 2 children have pkd. His father died early as did the uncle. Other than lower back ache an
bp no real problems yet. write me. drfoose
| Name: nancy adans | 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?: 63 female | Are you on Dialysis/what kind?: Hemo beginning 94 |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Montana | Is it alright for others to e-mail you?: yes |
Comments:
was diagnosed 5 years before kidneys failed. Have
PLD also. Hemo is working well. Will not
transplant as had open heart surgery 3 yrs ago and
have to take 7 plus mlgms coumadin a day which
makes me a surgeons nightmare, plus my liver is to
big and they'd have to cut out l/3 o
| Name: janet | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no-sister does | What's your age/gender?: her 31 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: greenwood s.c. | Is it alright for others to e-mail you?: yes |
Comments:
my sister has pkd and is very depressed and in pain, she isn`t eating right and not even walking for exercise. i want to help her i love her, can some one please give me any tips taht will help or that have helped you. i know her diet needs help and so do
s her spirit. thank you and i will pray for all of you and your famlies and i will help any way i can i am a survier of hepitis c and a recovering alcoholic and drug addict i draw strength from friends and loved ones.
| Name: graham | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes most | What's your age/gender?: 31 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: ontaio canada | Is it alright for others to e-mail you?: yes |
Comments:
my 7 year old son has pkd also.more info regarding
children with pkd would be nice.
| Name: Dana | 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?: 30 female | 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 recently learned that my best friend has PKD. I would like to speak to someone who can tell me what to expect? So far the only symptoms he has is lower back pain. Is there any treatment?
| Name: aimee | 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?: 22/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: california | Is it alright for others to e-mail you?: yes |
Comments:
my daughter was diagnoised when she was in utero.
i know very little about the disease and would
like to know more about it on a personal level.
She has ARPKD.
| Name: Arlene Gass | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/77% | What's your age/gender?: 23 F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Reno nv | Is it alright for others to e-mail you?: yes |
Comments:
I want to find someone with my age that has pkd so i know im not alone & to find out how they deal with it
| Name: parushi Shah | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 50% | What's your age/gender?: 24 yrs female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: nairobi, Kenya | Is it alright for others to e-mail you?: yes |
Comments:
I actually did an MRI for back pain but was diagonised with PKD. I'm not sure how to react or what to do. Any suggestions
| Name: Lisa Cauley | 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?: 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: Georgia | Is it alright for others to e-mail you?: yes |
Comments:
My mother has PKD and has been on dialysis for almost 8 years. She also has Hepatitis C (from a blood transfusion in the 70's) so she has not had a kidney transplant. I was diagnosed in 1988 but the only symptom I have now is high blood pressure. I wou
d be interested in what I can do now to prevent the PKD from effecting my health until later in the future? Any suggestions would be helpful. Thanks
| Name: joan neilson | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: dont know | What's your age/gender?: 61/F | 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:
Hi; I don't want to become overly fearful of this situation. I discovered ADPKD when I noticed my B/P extremely elevated, about 3 years ago. I could attribute symptoms to PKD but it is difficult to know if that is what is causing these symptoms or just
ld age. No flank pain, guess I'm lucky, so I can't complain. Thanks for the support from this web site. I have 4 children. According to investigations, the two girls are free of the disease but my two sons do have PKD. I have warned them to watch thei
blood pressure. Joan
| Name: Kim Ellman | My URL: Visit Me | My Email: Email Me |
| What's your age/gender?: 34yrs.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: Cinti. Ohio | Is it alright for others to e-mail you?: yes |
Comments:
It would be nice to talk to someone who understands.My mother and Grandfather both died from complications of PKD. I've known for 4yrs. now that I have it.
| Name: Darold Bott | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/20% | What's your age/gender?: 44/male | Are you on Dialysis/what kind?: not yet |
| Do you have a kidney transplant?: not yet | Where do you live? List state, area or country: Redding CA | Is it alright for others to e-mail you?: yes of course |
Comments:
If any body can give me some more info on the Paul Harvey program last week it would great. Both my kids have been diagnosed with pkd it would be great to see a cure soon.
| Name: Kate wisniewski | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/34% | What's your age/gender?: 40/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: nj | Is it alright for others to e-mail you?: yes |
Comments:
thanks for the informational site. I am a nurse and to be quite frank there isn't alot of information out there that isn't
repitetious. Thanks for some fresh ideas/in.
I am without function of 1 kidney and am at 34% of the 2nd. I don't feel like anything is wrong with me, I feel like this is a hopeless cause. Just what am I going to experience? Does everyone have esrf with this?
| Name: David Rhoten | 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?: male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: south carolina | Is it alright for others to e-mail you?: yes |
Comments:
I would like to hear from other people with this disease.
| Name: andrew norton | 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?: 30 Male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Plymouth, England |
Comments:
| Name: Gwen Koon | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes don't know | 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: sc | Is it alright for others to e-mail you?: yes |
Comments:
I just found out that I have PKD so I am searching for some information, since my doctor did not have alot of information.
| Name: Linda Lynaugh | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes. Normal | What's your age/gender?: 34/F | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Somerset, WI | Is it alright for others to e-mail you?: Yes |
Comments:
My father had PKD, complete removal of kidneys in 1984. Transplant/rejection 1986. Dialysis for 11 years. My kidneys are 17.5 cm length (left) 15.7 cm (right). I have had high blood pressure for about 6 years and do have discomfort. Both sisters also have
PKD. We have known since I was 12 that we all have it.
