01/27/00 04:35:00
| Name: Yolanda Garza | 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?: 45 female | Are you on Dialysis/what kind?: none |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Texas | Is it alright for others to e-mail you?: yes |
Comments:
I am looking for a diet plan that can be followed to help with my kidney readings, I am at a 2.2. Thank you.
| Name: Tony Kostakis | My URL: Visit Me |
| My Email: Email Me | What's your age/gender?: 47 M |
| Are you on Dialysis/what kind?: No | Do you have a kidney transplant?: No |
Comments:
| Name: Monica A. LAZARIN | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, about 40-45% | What's your age/gender?: 26/female | Are you on Dialysis/what kind?: no,not yet |
| Do you have a kidney transplant?: not yet | Where do you live? List state, area or country: TEXAS,PHARR-HIDALGO,COUNTY | Is it alright for others to e-mail you?: YES |
Comments:
IAM HAVING A REAL HARD TIME BECAUSE I HAVE NOT HAD ANY MEDICAL ATTENTION LATELY BECAUSE MY MEDICAID WAS REVOKED FOR WHAT REASON I DONT KNOW
| Name: Gary Bloom | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: yes,complete |
| 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: Colorado,Denver | Is it alright for others to e-mail you?: not now |
Comments:
| Name: Fred C. | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes <12% | What's your age/gender?: 60yr old male | Are you on Dialysis/what kind?: Yes Hemodialysis |
| Do you have a kidney transplant?: No, but on list for about a year. | Where do you live? List state, area or country: San Diego CA> | Is it alright for others to e-mail you?: yes |
Comments:
I m on the list. I would like to hear from others about their experinces.
| Name: Lauren | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes less than 100% | 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: Ohio/USA | Is it alright for others to e-mail you?: Yes |
Comments:
I friend told me that today on the "Paul Harvey" radio show,he made mention to a "break thru" for people with PKD. Something about being able to reverse the progress of cysts. Has anyone heard anything. I will keep looking for information on the web. Fat
er & brother also have pkd. :)
| Name: Pauline Ward | 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?: 40 | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Jersey, Channel Islands UK | Is it alright for others to e-mail you?: Yes |
Comments:
| Name: Gil Hymer | 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?: 45 M | Are you on Dialysis/what kind?: CCPD |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Quebec, Canada | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Michele Harper | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, early stage | 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: Wilson's Mills, N.C. | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Courtney Townsend | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no i don't | What's your age/gender?: 13/femlae | 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?: sure |
Comments:
| Name: Sherry Neeb | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes - no complications yet | What's your age/gender?: 41 - female | 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:
My Grandmother died in 1957 from PKD. My aunt and my mother died within the last 5 years from complications of PKD. My uncle and aunt have PKD. My two brothers have PKD. I was diagnosed at 31 with PKD. Two of my nieces (both under 30) have been diagn
sed with PKD. Currently, six cousins and their children/grandchildren plus five nephews or great-nephews under age six are at risk for PKD.
| Name: Jane Fish | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Not known | 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: England | Is it alright for others to e-mail you?: Yes |
Comments:
I have recently been diagnosed and know very little about the condition and I would appreciate information from fellow suffers especially with pain releif
| Name: Than Tan | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 100% | What's your age/gender?: 35 M | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Quakertown, Pa | Is it alright for others to e-mail you?: Yes |
Comments:
Thank you so much for your web site. I have learned so much about this disease.
My father passed away this week due to polycystic kidney disease. I also found out I have the same disease. Ultrasound showed my kidney 2X. If any one knew a good nephrologist in philadephia area please let me know. Thank you
| Name: KIM BLOOM | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: YES. ALL KIDNEY FUNCTION AT THIS TIME | What's your age/gender?: 26/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?: OKAY |
Comments:
| Name: Johanna | 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, 37 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Aarau, Switzerland | Is it alright for others to e-mail you?: yes |
Comments:
My younger sister also has PKD (other sister and brother don't have it - the famous 50%). Until now, we only have to control BP. Mother (59) on (Haemo)Dialysis. She had a kidney transplant some years ago but lost it because of Cytomegal virus Infection ca
sed by the transplant. Mother's brother - after some years of (peritoneal)Dialysis - was successfully transplanted years ago. Grandmother died of PKD when my mother was about 14, there was no Dialysis then.
| Name: kathleen | My URL: Visit Me | My Email: Email Me |
| What's your age/gender?: 22 | 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:
| Name: Sandra | 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?: 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: Nebraska | Is it alright for others to e-mail you?: yes |
Comments:
I am 33 and have PKD I am doing good I found out about 2 years ago that I do have PKD and also the liver. The liver isnt as bad as the kidneys though. Over half of my left kidney is covered. I havent had alot of problems other than infections at this tim
.
| Name: chris smith | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no not yet | What's your age/gender?: male 28 | Are you on Dialysis/what kind?: hemodyalysis |
| Do you have a kidney transplant?: not sure if I want it | Where do you live? List state, area or country: plainfield,illinois | Is it alright for others to e-mail you?: yes |
Comments:
need any information about this disease, is it a possible side affect of dialysis. chris smith 2106 culver court plainfield,il 60544
| Name: Linda Chupka | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes: ?not sure | What's your age/gender?: 43 Femaile | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Edmonton, Alberta, Canada | Is it alright for others to e-mail you?: yes |
Comments:
Is the Chat line still running on Monday nights?
| Name: Anita | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: I have ADPKD/functioning fine | 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: Melbourne, Australia | Is it alright for others to e-mail you?: Yes |
Comments:
I was diagnosed at about the age of 16 i think...i'm the first person in my family to get this disease...so far it has not really affected me...but with the way science is advancing so quick these days there may be a cure just around the corner
| Name: Evelyn Alvir | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 18 | What's your age/gender?: 60 | 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: NYC, NY | Is it alright for others to e-mail you?: yes |
Comments:
I just found out about my chronic renal failure a year ago - by accident (blood tests for another minor operation). My GFR was then 25. My sister-in-law found on the Internet the nutritional therapy program headed by Dr. Mackenzie Walser at Johns Hopki
s Hospital in Maryland. I went over there and started my tests. I was put on a very low-protein diet (16 grams a day) with essential amino acids as supplements (the product is Aminess by Nestle). I have absolutely no other symptoms except itching once
r twice a week and frequent urination. My interenist/hematologist prescribed Pocrit because my red blood cells are low - I get my shot of 20,000 unit once a week and has bolstered my hematocrit to 11.5 (it was 8 at one point).After ten months of just the
diet and check-ups at Johns Hopkisn (every other month) for blood and urine sampling, Dr. Walser put me on two drugs (Nizoral and Prednisone). I was ecstatic that in two months my GFR went up to 22 (from 18). However, I developed liver problems from the
Nizoral which I had to cease taking. I am due to see Dr. Walser in February to see how my GFR is faring.
| Name: BettyJ. Bennett | 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 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Utah | Is it alright for others to e-mail you?: yes |
Comments:
i would like very much for others to contact me .i'm a sibling of nine and i have two sisters and brother who don't have pkd i have lost my mom and one brother with it.it was inherited from my mom side i have had this for 8 years .no major problems yet. g
d blees everyone. Betty
| Name: Tasha | 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?: 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:
| Name: Kerry Boyd | 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?: 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: Houghton Lake, Mi. | Is it alright for others to e-mail you?: Yes |
Comments:
| Name: roothey | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: maybe,100% | 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: lycoming county pa | Is it alright for others to e-mail you?: yes |
Comments:
i have not been diagnosed yet but my dad,aunt and uncle all have it.if anyone knows how to get more info onthis or are there support groups for famililies.i have 2little girls and i worry they will have it too.godspeed and thanks!!
| Name: Melissa | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/65% | 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:
| Name: Geri Bublitz | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, functioning well | What's your age/gender?: 41, female | Are you on Dialysis/what kind?: no |
| 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:
Just looking for someone to chat with that has this disease. I have good kidney function at this time. I also have polycystic liver. I do have some symptoms and it would be nice to chat with someone who's disease is similar to mine. Thanks! Geri
| Name: louise | 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?: 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: Saskatechwan canada | Is it alright for others to e-mail you?: yes |
Comments:
| Name: bob bulger | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 90 +- | What's your age/gender?: 40 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: ct | Is it alright for others to e-mail you?: yes |
Comments:
interested in talking with others with pkd
| Name: Lisa Russell | 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?: 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 please |
Comments:
I would love to hear from anyone diet tips, books or any information on PKD. Especially anyone who would like to have a friend to share this disease with.
| Name: Kristine | 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?: 18/F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Illinois | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed with PKD when I was 14yrs old. My mom and aunt has it and my grandma died from it. I haven't had any problems until recently when I started having back problems. I just wanted to know if because I was diagnosed so young will I have more
problems and if I have kids will I really have problems?
| Name: Vicki Bohman | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, normal range | 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: Wisconsin | Is it alright for others to e-mail you?: yes, please do |
Comments:
I am interested in learning more about PKD and sharing information with others. If anyone can recommend any good books please email me.
| Name: Nancy Larsen | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes About 18% | What's your age/gender?: 53 Female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: Coming up soon | Where do you live? List state, area or country: Oregon coast | Is it alright for others to e-mail you?: Yes |
Comments:
Because I'm getting close to transplant time, I'm interested in talking to people who've been there. It's helpful to be in touch with others who are going through the same thing.
