02/29/00 21:05:04| Name: Alison | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: maybe10-15% | What's your age/gender?: 40 Female | Are you on Dialysis/what kind?: Yes Hemodialysis |
| Do you have a kidney transplant?: I'm currently on the donor list | Where do you live? List state, area or country: California | Is it alright for others to e-mail you?: yes |
Comments:
I've come from a family with generations of PKD. My father, most of his siblings, including his father have all past from this disease. My brother has recently had a transplant, and doing well. We are the first generation to have dialysis/transplant to e
tend our lives. I have two children diagnosed with it, and one child without it. I would be glad to help anyone with questions about coping with this. I've been through the depression phase and the scared phase and I'm now at a level of resolution and lo
king forward to my future.
| Name: allen ellison | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 30% | What's your age/gender?: m/51 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: so.dak. usa | Is it alright for others to e-mail you?: yes |
Comments:
Very frustrating trying to get info on this disease. No one in my familly has had pkd. Looking for good source of info on pkd.
| Name: Sue | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, 100% at present | What's your age/gender?: 29 female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: hertfordshire, ENGLAND | Is it alright for others to e-mail you?: yes |
Comments:
I inherited PKD from my Father, as did my Brother. I was diagnosed 5 years ago after the birth of my Son. I have had conflicting opinions from the medical profession regarding the physical complications of having more children and would like to hear fro
anyone who has experienced pregnancy first hand (either as the mother or father) who could tell me if pregnancy with PKD is any more tiring/complicated than a normal pregnancy!! To anyone newly diagnosed with PKD, PLEASE ask your GP to be referred to a
enetic Counselling Service, they are very patient and understanding and are only too pleased to listen and answer any questions you may have. Look forward to hearing from you.
| Name: Tim younts | 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?: 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: Washington | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed about 10 yrs. ago. Pain is becoming an evertday experiance, along with fatigue. Try to stay upbeat and live life one day at a time. I sure wish I knew how much larger my kidneys could get. God bless all of you and good luck!!
| Name: Kathy Venneman | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, Not sure how much fuction...both are currently working. | 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: Canada | Is it alright for others to e-mail you?: Yes |
Comments:
Would like to speak to people that are in the same boat.
| Name: Ali | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: I've had PKD my entire life | What's your age/gender?: 16/female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: AB, Canada | Is it alright for others to e-mail you?: Yes |
Comments:
I'm a 16/f. If anyone around my age wants to talk about pkd, you're more than welcome to talk to me! I have had PKD my entire life. I was diagnosed with it the day I was born. I'll answer any questions you may have!
E-mail me!
-ALi
| Name: Michele L. Levar |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Ex-husband and mother-in-law have PKD. Living in a small town there is not much info or support groups. I am very interested in hearing from others with PKD or their family members. We struggling daily with trying to keep this at bay.
The future of our son and many others is always on our minds. If anyone would like to drop me a line please do.
| Name: Gary | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, no kidney function | What's your age/gender?: 45 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: Minnesota | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed 12 years ago, right after my mother died from complications of PKD, and have a sister also affected but she had a transplant about 8 years ago and is doing great. Just recently had my kidneys removed because of increased size and pain in
ower back. Now am on hemodialysis 3 times a week. Hope to start peritoneal as soon as possible. Depression was very hard to deal with but was able to work through it. Having PKD shouldn't be a decision making factor to have a family or not. There are w
rse diseases in the world. Someday there will be a cure for the disease.
| Name: Lonnie | 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?: 52 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: North Dakota | Is it alright for others to e-mail you?: yes |
Comments:
My mother at 76 now on hemodialysis. Inherited from her. Exercising and weight lifting now 2 to 3x weekly. Have back itch and or tingling over kidney area. Take B/P meds. Want comments on how to prolong good functioning kidneys? Heard about new med gven to dry up cysts. Similar to cancer-like drug. Anybody know anything about it? Soon to be used at Mayo in MPLS, MN.
| Name: John D. McPherson | 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 58 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: NY | Is it alright for others to e-mail you?: yes |
Comments:
I just found out I have this desease
| Name: Pam | 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/F | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: County Durham, England | Is it alright for others to e-mail you?: Yes |
Comments:
As many of you will already know I'm currently involved in the set up of a PKD Charity in the UK - hopefully this will also encompass the work of a support group & I'd like to encourage anyone who is interested in either becoming involved in the work of t
e charity or in simply being a member to contact me. There's strength in numbers & as this site proves, it's good to be able to exchange ideas & information, as well as sharing experiences!
| Name: Kate Simmonds | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: Don't know |
| What's your age/gender?: 36 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: Lincoln, England | Is it alright for others to e-mail you?: Not Yet |
Comments:
recently diagnosed - no more information - reason for visiting site.
Kate
| Name: Kate Simmonds | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: Don't know |
| What's your age/gender?: 36 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: Lincoln, England | Is it alright for others to e-mail you?: Not Yet |
Comments:
recently diagnosed - no more information - reason for visiting site.
Kate
| Name: Paula Maszak | 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?: 52---female | 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 just got diagnose with PKD as of Feb.18, (a few days ago).....I have found this site to help me. I had so many questions. thank you..Paula
| Name: deb | 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?: 44 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no,mother has | Where do you live? List state, area or country: carlinville, il | Is it alright for others to e-mail you?: yes |
Comments:
mother had transplant in 1999, i have been diagnosed with pkd several yrs. 3 children have disease 1 has not been tested. not sure what to expect, except to learn from mother's experience.
any comments welcome
| Name: rajeev batra | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: can't say.father brother sister all have PKD | What's your age/gender?: 37 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: DELHI , INDIA | Is it alright for others to e-mail you?: YES SURE |
Comments:
my father and uncles(3) all had PKD and all except my father had compromised renal function.I got an ultrasound done for my brother and sister done which confirmed them to be PKD although they show no such signs.recently I came across an article which tal
ed of a drug which talked of suppressing the growth of cysts.trials on mice have been successful.I WOULD LIKE TO KNOW MORE ABOUT IT.drug name is EKI-785 REPORT IN january issue of kidney international and principle investigator is Dr.Ellis Avner of rainbo
babies and children hospital cleaveland ohio.
| Name: Andrew Keahiolalo | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: unknown |
| What's your age/gender?: 20/m | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: bellingham, wa | Is it alright for others to e-mail you?: sure |
Comments:
my father has pkd. not sure if i have it yet.
| Name: E.RIEMER | 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?: 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: Alabama | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Suzie | 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 / 30 | 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 have signed the guestbook before -- but I wanted everyone in SEATTLE to know, we are hosting a Friends Group meeting Monday, Feb. 28th at 7pm at the Northwest Kidney Center on Capital Hill in Seattle. For those of you who don't know about Friends Groups
they are support groups located in major cities across the country. They are organized by the Polycystic Kidney Research Foundation. And this is a great time to get involved!! We have new leadership of the Seattle Friends Group with lots of energy and id
as. The meeting is free and all PKD patients, family members and friends are welcome. We'll have a brief research update, introduce two people from the foundation who will be in town from Kansas City, and discuss topics you'd like to see covered in future
meeting in the year 2000. It's a great way to become more involved, to ask questions, to hear from doctors and other specialists, to offer support to others, and to participate in raising awareness and funds for PKD. If you live in or around Seattle and a
e interested in attending, please email me at: [email protected] and I'll send you the address and information. Hope to see you there!
| Name: cathy wolfe | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 60% | 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: PA | Is it alright for others to e-mail you?: yes |
Comments:
I am interested in learning more about PKD. This is my first encounter with the internet.
| My URL: Visit Me |
Comments:
| Name: Cleofe | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes. I do not know yet | What's your age/gender?: 60 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:
three years ago I had a kidney ultra sound because of recurrent UTI. A cyst was noted in one kidney and my doctor (Internal Medicine) said not to worry about it because it was "nothing". The next year cysts were also found in the other kidney. And this
ear after an annual general check-up, the diagnosis was I have PKD since both kidneys are now cystic. I know I cannot do anything about an inherited disease but I feel that I should have been advised early on to take care of my diet if only to slow down
he growth of the cysts instead of my cysts being dismissed as "nothing". Does anyone know exactly what I should stay away from in terms of food and activities. Thank you
| Name: Dolly Smith | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, 25% | What's your age/gender?: 51 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Chicago, IL | Is it alright for others to e-mail you?: yes |
Comments:
I have been diagnosed since I was 33 and am now 51. I live a relatively normal life with cyst bleeds or infection averaging about 3-4 times a year. My Mom had PKD and died at 51 of a brain tumor.
Dolly
| Name: Norman Wang |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Well done.
Happy Valentine's Day
| Name: steve | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, unknown | 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: madison, ohio | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Charlie | 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?: 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: Kentucky | Is it alright for others to e-mail you?: yes |
Comments:
I was told by a family member of a new medication that can disolve the cyst.If anyone has any information on this I would be very greatful for it. Thank you.
| Name: bernie | 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?: 38 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: ireland | Is it alright for others to e-mail you?: yes |
Comments:
im fourth generation to have pkd my mum died age 50 never got a transplant my uncle did and is well ihave 2br and i sis and 3 of us have it i would be grateful if anybody would e-mail me to dicuss this thank you bernie
| Name: Ginny | 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?: 43 | 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 county, CA | Is it alright for others to e-mail you?: sure |
Comments:
My swim aerobics teacher has PKU. She just told us. Her brother also has it. I just want to know what it is and how I can be of encouragement to my teacher.
| Name: Sandy | 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?: 58 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: SD | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed with pdk 17 yrs. ago. Have had severe flank pain. Had three cysts (one the size of a tennis ball) punctured and drained (Jan. 99). Took care of the flank (sciatic pain) on right side. Abdomen is starting to bulge because of growth. Wo
k full time-extreme fatique is hard to deal with. One sister has pdk also pld. Great grandmother, grandfather, mother (transplant), aunt and uncle had pdk. All died by the time they were 54 except mother who lived 7 1/2 yrs after transplant. Died of s
rokes. Have watched my diet for all these years and believe it has helped.