PKD Information Page (Main Page)

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08/26/00 08:06:18
Name: yvette My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes. 100%i think. What's your age/gender?: Female 35 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Gold Coast QLD Australia Is it alright for others to e-mail you?: yes

Comments:
I have just been diagnosed on 25/08/00 with pkd.My father had pkd. The only symptom i have is high blood pressure which i have had for at least 4 years. My ultrasound showed enlarged kidneys and multiple cysts however have not been told how enlarged toe k dneys are. I have never enquired about pkd as my father died when i was 6..... he was 42.


08/24/00 10:10:02
Name: Heidi My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes. Normal for now. 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: Athens, Greece Is it alright for others to e-mail you?: Yes

Comments:
I just found out that I've got PKD and I would like to find out as much as possible about it. I would appreciate the help of a support group.


08/22/00 21:56:28
Name: Marci 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?: 26/Female Are you on Dialysis/what kind?: Not yet
Do you have a kidney transplant?: No. Where do you live? List state, area or country: Portland, Oregon Is it alright for others to e-mail you?: Yes

Comments:
I'd appreciate receiving any information sources (URLs, authors, etc.) about how I can fend off complete kidney failure for as long as possible. Thank you in advance.


08/21/00 15:14:49
Name: sharyn 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?: 39 F Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: melb australia Is it alright for others to e-mail you?: yes

Comments:
Had PKD since I was 20. My father died from PKDt at 45. Anyerism in family too. My 12 year old daughter has just been diagnosed with it. Would like to know how long after intital back pain it becomes severe and more info on teenagers with it. Will cha to anyone about PKD


08/16/00 21:15:33
Name: Dionne Richardson My Email: Email Me Do you have PKD? Approximately how much kidney function do you have?: Yes, 100% i think
What's your age/gender?: 21 Female Are you on Dialysis/what kind?: No Do you have a kidney transplant?: No
Where do you live? List state, area or country: UK Is it alright for others to e-mail you?: Yes

Comments:
I was told today that i have PKD a number of small cysts on my kidneys 20 - 30 mm, I know my grandmother died of PKD and my father has recently been diagnosed, my mum and dad are divorced and i have no contact with my dad. I was told to be tested immediat ey as i am 4 months pregnant. I am scared for both me and the baby. I have hardly any info and no one to talk to who understands and can help me to understand.


08/16/00 02:29:49
Name: Nancy My URL: Visit Me Do you have PKD? Approximately how much kidney function do you have?: yes 98%
What's your age/gender?: 49 F Are you on Dialysis/what kind?: no Do you have a kidney transplant?: no
Where do you live? List state, area or country: Texas USA

Comments:


08/15/00 16:12:52
Name: Elizabeth Brewster My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, unsure 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: Michigan (Detroit area) Is it alright for others to e-mail you?: yes

Comments:
I was tested for PKD after my Mom had to start dialysis. She did well going to a center 3 times a week and then decided to start home dialysis; which gave her a serious infecting causing her death recently. I have a 3 year old daughter that has already een tested and as of now does NOT have PKD.


08/14/00 02:41:36
Name: Lauren 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?: 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/USA Is it alright for others to e-mail you?: Yes

Comments:
It looks like a lot of us experience lower back pain due to the pkd. Has anyone considered going on disability and how would one go about doing that? My father and brother also have pkd, with lots of back pain.


08/13/00 02:47:47
Name: marilyn My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 60% 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: texas Is it alright for others to e-mail you?: yes please

Comments:
would like to hear from others with pkd my father died at 49 with pkd and i have alot of fears for myself.......


08/12/00 13:21:33
Name: Jim S My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 15% What's your age/gender?: 49yrs m Are you on Dialysis/what kind?: not yet fistul failed
Do you have a kidney transplant?: not yet Where do you live? List state, area or country: canada Is it alright for others to e-mail you?: yes

Comments:
I want to talk to others for support


08/11/00 21:04:06
Name: Melissa O'Rourke Merida My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: potentially-haven't been tested What's your age/gender?: 23, female Where do you live? List state, area or country: Indiana
Is it alright for others to e-mail you?: Yes

Comments:
PKD has taken the lives of many of my family members, including my grandfather, over half of my great-aunts and uncles; and my father and one of my aunts have it, one of their cousins recently started dialysis and is on the national transplant list. I ha e not yet been tested, mostly because I'm afraid to know. I've just recently begun to look into the disease itself, since I recently married and am planning to start a family soon. If anyone can give me any useful information I would greatly appreciate t.


08/11/00 14:08:32
Name: kay begue 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/female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: louisiana Is it alright for others to e-mail you?: yes

Comments:
I found out I had PKD at age 28. I inherited the disease from my father who passed away in 1968. Not much was known about the disease then. I am having no problems other than back pain. My right kidney is much worse than my left one. I also have cyst on y liver. I have pain in my lower back most of the time, but for no apparent reason the pain becomes so intense it is almost unbearable. Could the cyst be bursting or is it just the pressure from the enlarged kidney? What is your Doctor saying?


08/11/00 00:04:22
Name: Michael Deiler 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?: 38/M 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:
I was diagnosed with PKD today with numerous cysts ranging from 4mm to 8 cm on both kidneys. Prior to experincing the onset of pain one week ago, I never had any kidney or urinary problems. This is not fun.


08/10/00 00:45:19
Name: Cyndi Collins 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?: 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: Illinois Is it alright for others to e-mail you?: yes

Comments:
I found out I had pkd 6 months ago when I had a mini stroke. My blood pressure was 175/125. My mother died when she was 36 from a brain anersym, never knowing she had pkd. Her mother died the same way. Needless to say I had my head checked out.


08/08/00 21:00:15
Name: WANDA STAPLES My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: YES. 45% What's your age/gender?: 53 FEMALE Are you on Dialysis/what kind?: NOT YET
Do you have a kidney transplant?: NO Where do you live? List state, area or country: N.C ANGIER Is it alright for others to e-mail you?: YES

Comments:
I FOUND OUT IN 1995 THAT I HAD PKD. I HAVE DONE WELL SO FAR. I WENT TO THE DR. LAST WEEK AND THEY ARE GETTING WORSE. I WOULD LIKE TO KNOW HOW THE DIALYSIS WORKS. I GO BACK TO THE DR. IN NOV. AND HE SAID WE WOULD SEE WHAT ROUTE TO TAKE AT THAT TIME.I GUESS HEARING IT FROM THE DR. AT THIS POINT IT IS BEGINNING TO BOTHER ME.I GUESS NOT KNOWING WHAT TO EXPECT.


08/06/00 18:49:41
Name: Russ Roten My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, about 90% still testing What's your age/gender?: 27/M Are you on Dialysis/what kind?: Nope
Do you have a kidney transplant?: Nope Where do you live? List state, area or country: Texas Is it alright for others to e-mail you?: Yes

Comments:
Well, I could list a family history including death, dialysis, aneurysm's, and general fatigue. Basically looking to see who my age has it and what symptoms? High bloodpressure-hypertension, with lower back pain when I wake up in the morning. Tired of the pain. Feel free to email me.


08/06/00 13:16:26
Name: Elizabeth Mills 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?: 43, female Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: Oklahoma City, OK Is it alright for others to e-mail you?: Yes

Comments:


08/05/00 04:49:32
Name: David Sharp My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 90- 100 % What's your age/gender?: 39 Are you on Dialysis/what kind?: no
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:
Recently diagnosed and having problems with hypertension. Mother had PKD treated with PD and transplant.


08/04/00 22:58:11
Name: julia ann My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 40% 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: Illinois Is it alright for others to e-mail you?: yes

Comments:
Recently I have been getting blockages of the ureter. The doctor says they are not from stones, but is not sure what they are. Does anyone have experience with this?


08/04/00 13:38:04
Name: Cathie Ralph 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?: 30/female Where do you live? List state, area or country: Salisbury, Maryland
Is it alright for others to e-mail you?: yes

Comments:


08/03/00 01:31:02
Name: cindy gray My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes / 100% function 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: missouri Is it alright for others to e-mail you?: yes

Comments:
i was diagnosed at age 14. i'm 31 now. i feel so blessed to have an awesome MD in memphis. he diagnosed, monitered, and informed me for all of these years. i feel so at ease with this because i know i'm in exellent hands. God Bless you all who are exp riencing this both personally or through a loved one.


08/01/00 01:00:12
Name: marilyn blake My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 60% 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: arlington, tx Is it alright for others to e-mail you?: yes

Comments:
i just got on the internet would like to hear from others with pkd.


07/30/00 18:11:04
Name: RICARDO KEEL 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?: 44 Are you on Dialysis/what kind?: was on hemo 210 times
Do you have a kidney transplant?: yes 6 months ago Where do you live? List state, area or country: mexico city Is it alright for others to e-mail you?: yes

Comments:
I FEEL GREAT AGAIN IT IS MY SECOND OPORTUNITY FOR LIVING. YOU CAN WRITE ME IN SPANISH, ENGLISH, GERMAN, ITALIAN


07/30/00 01:11:15
Name: marilyn blake My Email: Email Me Do you have PKD? Approximately how much kidney function do you have?: yes 60%
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: arlington tx Is it alright for others to e-mail you?: yes

Comments:


07/28/00 19:11:12
Name: David Herring 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?: 64 /m Are you on Dialysis/what kind?: no
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:


07/28/00 16:27:31
Name: Hasan Masood Raza My URL: Visit Me My Email: Email Me
What's your age/gender?: 47/male Are you on Dialysis/what kind?: no/never Do you have a kidney transplant?: no
Where do you live? List state, area or country: pakistan Is it alright for others to e-mail you?: yes but relevant

Comments:
Relevant information is available on this site


07/27/00 03:50:19
Name: Saleh Yaseen My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes I reached end stage What's your age/gender?: 46 male Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: yes Where do you live? List state, area or country: Ohio Is it alright for others to e-mail you?: yes

Comments:
I had my transplant about a year ago. Things have worked out very nicely since I recieved a kidney from a sister. You just have to be optimistic about this and don't give up.


07/26/00 23:34:30
Name: Katie Gravitte My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes. I have full function at present. 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: Camden, SC Is it alright for others to e-mail you?: yes

Comments:
I also have hypothyroidism and rheu. arthritis.


07/25/00 17:37:05
Name: Tamara Duncan My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/all so far What's your age/gender?: 23/Female Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Missouri Is it alright for others to e-mail you?: yes

Comments:


07/21/00 21:26:35
Name: Lakisha Smith My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: No, I do not but my two month old Daughter does. Her left Kidney dosen't work at all and her right on oly works about 75%. What's your age/gender?: I am 20 years old. My daughter is 2 months old and she is a twin. Are you on Dialysis/what kind?: No she is not on dialysis
Do you have a kidney transplant?: No Where do you live? List state, area or country: Queens, Ny Is it alright for others to e-mail you?: Yes

Comments:
I would like to hear from anyone who has PKD or their children who may have PKD or even MKD. Please because my daughter is still in NICU. Thank you in advance. Lakisha Smith Mother of Ja'shya Harrison


07/21/00 10:24:19
Name: gemma 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?: 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: Essex Is it alright for others to e-mail you?: Yeah

Comments:
I've known that I had pkd since I was about 7 and know that there's nothing for it. My dad's family pass it on and 1 of my 2 sisters has got it. I go to St.James' Hospital every few years to see Dr.SaggarMalik and he scans me and tells me how muh it's w rsened. My granddad has got it REALLY bad and is on haemo-dialysis every other day.


07/19/00 17:32:49
Name: Denise Miller 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 35 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 was diagnosed with PKD in 1987. My kidneys function normally. I want to learn exactly what this disease is and does. My dr.s (i've seen several) are not very informative. My Mother and Aunt both have the disease. My son shows some cysts but they t ll me this is normal. Is it? Please e-mail me with any info. I pray for all people with PKD. thank you




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