| Name: Jack | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes / full | 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: Milford,New York | Is it alright for others to e-mail you?: yes |
Comments:
First found out I had PKD last year when a ruptured cyst put me in the hospital from the pain.
| Name: lynn | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: arpkd/chf--- my son |
| What's your age/gender?: 17 male | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: pa | Is it alright for others to e-mail you?: yes |
Comments:
i am just learning how to work this internet i am very interested in any info i can get i will ask my son for the e-mail address so we can talk my son has been living with this for 17 years so has his family
| Name: Scott Bakotic | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 85% | What's your age/gender?: 33 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:
| Name: Valerie | 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?: 37; female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Texas; Ft Worth | Is it alright for others to e-mail you?: yes |
Comments:
I've posted on the message board and will state again - I would love visiting with others that have PKD. I come from a strong family history of it. I have two children, both girls; 13 & 5, my youngest also has PKD - would love visitng with any and all
iving the same thing. THANKS
| Name: jean | 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?: 51 female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: mn. | Is it alright for others to e-mail you?: yes |
Comments:
Dear friend has this disease and I want to help her all I can.
| Name: Carrie | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes i dont know | What's your age/gender?: 14/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?: sure thing |
Comments:
im 14 turning 15 soon and im scared i dont know
exactly what i have. ive read tons of things about pkd. i want to know how long ill live or if im worrying every day for nothing my mother doesnt know anything about it and my doctor is in another city im scared.
| Name: walter gleye, p.e. | 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 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: not yet | Where do you live? List state, area or country: san antonio texas | Is it alright for others to e-mail you?: for now |
Comments:
i am presently doing dicovery of the mechanics of
PKD.
so...if you can be of any assistance, then thank
you
| Name: ravi | 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?: male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Mumbai - India | Is it alright for others to e-mail you?: yes |
Comments:
I am 32 yrs of age, at the moment my kidneys are functioning normally. If somebody could advise on day to day diet.
| Name: bobrovski rami | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes.end stage renal failure | What's your age/gender?: 53,femail{it is my wife} | Are you on Dialysis/what kind?: hemodialysis |
| Do you have a kidney transplant?: not yet, | Where do you live? List state, area or country: Israel | Is it alright for others to e-mail you?: yes |
Comments:
| Name: daisy garcia | 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: Philippines | Is it alright for others to e-mail you?: yes |
Comments:
| Name: richard payne | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Less than 50% | What's your age/gender?: 60 | Are you on Dialysis/what kind?: Not yet |
| Do you have a kidney transplant?: Nope | Where do you live? List state, area or country: Guam | Is it alright for others to e-mail you?: No problem |
Comments:
Hi. My fraternal twin is currently on a dialysis machine (5 years) and is doing quite well (if you don't mind having a machine tend to you every 3 days). My younger brother (age 55)is now a candidate for the dialysis program. Me? Well, I am almost 60 a
d the attending physician said I have another 5-6 years (the way things are going). I currently live on Guam and have stayed away from pork, red meat. My brothers are disturbed that I am not on a dialysis machine as yet. They believe its because I have
een living on Guam since 1979, exercise daily with (Denise Austin),monitor my Bp. Rest assure I do have PKD and have seen pictures to prove it.
| Name: Linda Grable | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: my brother does | What's your age/gender?: he is 60 | Are you on Dialysis/what kind?: he was on hemo 5 years |
| Do you have a kidney transplant?: yes, 2 years ago | Where do you live? List state, area or country: Bellevue, WA | Is it alright for others to e-mail you?: yes |
Comments:
I would like to know whether it is common practice to give a CMV positive kidney to a CMV negative patient.
| My URL: Visit Me |
Comments:
| Name: hana | 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?: female, 10 days | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: slovenia, europe | Is it alright for others to e-mail you?: yes |
Comments:
I gave a birth on June 13th and right away after birth doctors told me my baby have PDK. I've never heard for that deasise, so I am not sure what to do or what to expect in future. So far the blood results are great.
| Name: Shania | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes,not sure yet | What's your age/gender?: 3yrs old,fem | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Colorado | Is it alright for others to e-mail you?: yes |
Comments:
I just found out that my daughter has PKD a few days ago, so all of this is all new to me, don't know of any family members with it yet, don't know what to expect and will she be able to have a normal life at all. Anyone that knows what I'm going through
please send me any info that you have on children with this disease. The Dr said, "that I don't need to do a thing for her", thats hard to believe!
Laurie (mommy)
| Name: Shannon Alsbrooks | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, I have PKD | 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: Adams, TN. | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Sai K. Huan | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: Yes, with around 60% |
| 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: Kuala Lumpur, Malaysia | Is it alright for others to e-mail you?: Yes |
Comments:
I'm wondering what is the average age of a PKD patient to reach end-stage renal failure.
| Name: Dani | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/all | What's your age/gender?: 20/f | Where do you live? List state, area or country: wyoming |
| Is it alright for others to e-mail you?: yes but place PKD in subject line |
Comments:
I'm 20 and just found out 2 days ago tha i have PKD. I'm trying to learn as much about it as possible. Please help. I found a little bit of information but I like the information learned from people telling there stories. If anyone would like to email
me, please place PKD in the subject line. Thank you, Dani
| Name: Andrea Nutt | 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?: 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: Northern Ireland | Is it alright for others to e-mail you?: Yes |
Comments:
Hi. I'm writing in the hope that someone can help. My fiance died in March of a brain haemorrhage - he had PKD. His Mum also has the disease, has had a transplant & is in her mid 60's. She has also had 2 brian heamorrhages and some "clipped" whatever th
t entails. His brother and one of his sisters also have the disease and are now understandably terrified. He was 30 when he died they are 26 and 28. Can anyone give me some information, advice anything.... desperate for information on brain scans, chances
of haemorrhages occuring,etc. He never suffered from any problems connected to PKD. Hoping someone can help.
| Name: sarita | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: unknown | What's your age/gender?: 54 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: tampa, florida | Is it alright for others to e-mail you?: yes |
Comments:
Megustaria que alguien me informara de esta enfermedad.
| Name: Susan | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes still good function | What's your age/gender?: 43, female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: n/a | Where do you live? List state, area or country: Scotland UK | Is it alright for others to e-mail you?: Yes |
Comments:
Looking for advice on preservation of kidney function for as long as possible/
| Name: Judy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes-30%-70% | 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: Knoxville,Tn | Is it alright for others to e-mail you?: only if they have PKD |
Comments:
Family history of PKD-Third-maybe fourth generation
| Name: colleen davidson | My URL: Visit Me | My Email: Email Me |
| What's your age/gender?: yes 10% | Do you have a kidney transplant?: no | Where do you live? List state, area or country: Albrta,Canada |
| Is it alright for others to e-mail you?: yes |
Comments:
| Name: colleen davidson | My URL: Visit Me | My Email: Email Me |
| What's your age/gender?: yes 10% | Do you have a kidney transplant?: no | Where do you live? List state, area or country: Albrta,Canada |
| Is it alright for others to e-mail you?: yes |
Comments:
| Name: jenny | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, I'm not sure | What's your age/gender?: 27/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?: yes |
Comments:
I was diagnosed last summer when I was pregnant with my 3rd child. My father had pkd and died of a heart attack four years ago. Two of my three brothers have been diagnosed with the pkd. My doctor isn't very informative. He told me there is nothing I
an do at this point but wait for kidney function to start failing. There aren't any support groups where I live to help get information from. I would love to hear from anyone who has gone through this.
| Name: nbkulkarni | 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?: male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: not yet | Where do you live? List state, area or country: india | Is it alright for others to e-mail you?: yes please |
Comments:
i want to be in touch with othes of pckd
nbkulkari
| Name: Christina | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 80% | What's your age/gender?: 51 fm | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: LV NV | Is it alright for others to e-mail you?: yes |
Comments:
Hi, I would like to here from anyone who has updated info on pkd. So far, all I know to help
it from getting worse, is keeping the blood pressure under control. I have not been told to
watch my diet. I just got my 1st comp. so I hope
I don't mess this up. take care,hopeing for a cure
| Name: Mary G | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: No,a friend of mine does. kf=unknown | What's your age/gender?: He is 43 and I am 42 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Delaware, Ohio | Is it alright for others to e-mail you?: yes |
Comments:
I have been dating this man for 1 1/2 years now. Last year, he told me he had PKD. He has known he has had it for almost 20 years. His father recently died from this last November. His father had gone through a kidney transplant that rejected after 10 ye
rs(?) and was on kidney dialysis when I first met his father. My friend is a very private man and very proud. He doesn't want to worry me. What I have found out about this disease has been from this web page. I love this man very much, and feel helples
because, he keeps this disease a secret from everyone, including his other siblings. So, you see there is no one for me to talk to or ask questions. I'm really scared, and he's already told me he won't go through a kidney transplant. He may be showing si
ns of congenital heart failure as he wheezes from time to time. The good news is he's a runner, which I hear helps to reduce the fluids. I even told him about this web page, but he shows no interest at present. I want him to fight this disease and I wan
to have a life with him. Please give me some hope.
| Name: Melissa McDonald | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: No, my grandfather & mother do... approximately 3% | What's your age/gender?: Female, 20 | Are you on Dialysis/what kind?: No, they are told they are lucky not to be |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Pelican Waters Queensland Australia | Is it alright for others to e-mail you?: Yes |
Comments:
I would like to know more about the disease as my pop was the first one diagnosed with it in our family. We believe that some ancestors had the disease in evidence simply because of their related symtoms but no-one ever had it diagnosed and now my pops k
dneys are really bad as he didn't know what to do and didn't realise until late in life what was wrong. Please can someone help me with information to the diet and potassium and its effects to the kidneys and possibly what foods have it in.. or advise m
where I can seek this information?
| Name: J.D. Burnside Sr. | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes & not yet sure | What's your age/gender?: 52/male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Akron,Oh. | Is it alright for others to e-mail you?: Would appreciate it |
Comments:
Original diagnosis 1994 with a referral to another doc. At that time, the phrase "PKD" had not been used. Cysts were mentioned and no detailed description was given as to what going on. I built new countre tops for a doctor and his wife who just happened
o be a dialysis nurse (thank God)in the Canton,Oh. area and can't even recall exactly how the conversation came up. I mentioned kidney cysts and the questions began. Had it not been for that small job and the fact that the lady happened to be a dialysis n
rse I would have gone on possibly to a point that would have been worse than the present situation. Those are my comments for now and so the education begins. Have an appt. at City Hosp. in Akron approx. 2 weeks from now. It is my understanding that PKD i
a progressive disease but quality of life can be o.k. or at least pretty good following a maintenance program of proper diet and so forth. Really don't know what to expect yet so will hope for the best.
God bless all,
Joe
twofish1947@email.com