Comments:
I`m interested to know more about it i`ve only knew about it for approx 5-6yrs and i was diagnosed while i was pregnant with my son so far he is okay don`t have a very good time dealing with it at all it frightens me something horrible.... Nicola..... I am quite happy to talk to anyone about it the more info shared the better then each other can help each other out.

11/24/98 18:34:07

Name: Chris Campbell	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: My daughter has it	What's your age/gender?: Three, Female	What do you live? List state, area or country: Onario, Canada - Phoenix, Arizona
Is it alright for others to e-mail you?: yes

Comments:
More information on ARPKD and hepatic fibrosis. We have alot of information but would like more.

11/23/98 00:11:01

Name: Ed Garavelli	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?: no	What do you live? List state, area or country: Tn Memphis	Is it alright for others to e-mail you?: yes

Comments:

11/22/98 15:08:07

Name: GILBERT 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?: 44. MALE	Are you on Dialysis/what kind?: PD
Do you have a kidney transplant?: NO	What do you live? List state, area or country: MONTREAL, QUEBEC, CANADA	Is it alright for others to e-mail you?: YES

Comments:
My PKD kicked in about 7 months ago. I am on PD using the Freedom cycler. I'd be interested in learning about other people's experiences

11/22/98 00:37:29

Name: Joan	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes-do not know	What's your age/gender?: female/53	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: IL	Is it alright for others to e-mail you?: yes

Comments:
Learned I had PKD since 1983. I also have cysts in my liver 2 are very large. In 1985 the one on the right lobe of the liver was drained by ultra sound. It has increased in size again - having a lot discomfort on my right side. Would like to anyone with similar problems.

11/21/98 19:38:47

Name: Robin Elsoffer	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, not sure about function	What's your age/gender?: 46-female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Cleveland, Ohio	Is it alright for others to e-mail you?: please, I need info. on disease.

Comments:
what does url mean? I am new to this disease and noone in my family has it. I am looking for information and support. Help!

11/11/98 03:02:43

Name: Brandi	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, only mostof left kid.	What's your age/gender?: 19 /femle	Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: no, removed	What do you live? List state, area or country: rkfd/il	Is it alright for others to e-mail you?: definately

Comments:
I was diagnosed with PKD at 8mths. At 12 had right kidney removed. am now 19 and doing fine so far.

11/08/98 18:00:20

Name: Sandra	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 25-30%	What's your age/gender?: 45/Female	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: PA	Is it alright for others to e-mail you?: Yes

Comments:
I was diagnosed at age 19 and in the past year my kidney functioning has rapidly declined. My mother was on dialysis in 19976 for one year and my brother is a successful transplant recipient.I have been bothered by chronic and acute pain for the past 9 ye rs and do various things to cope with the pain. Recently I had three cyst aspirations. My biggest worry is how my future kidney failure will impact my ability to work and carry on life as usual.

10/26/98 18:20:12

Name: Cathy Cambre	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, low normal	What's your age/gender?: 43yo female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Hampton, Arkansas	Is it alright for others to e-mail you?: yes, please

Comments:
I was diagnosed at age 19. My mother had PKD and died at age 57 after a year and half on dialysis. At age 23 I began to suffer from cyst infections. They are becoming more frequent and harder to get over. At this time I have one and also a cyst in my live that is definitely doing something. Another link we have is horses. This has sure put a halt to my riding. But I still have my 23yo Quarter Horse. i be thinking of you and your sister on Nov.2. What a gift. God Bless You and your family and I'll be che king your web page. You are in my heart. Cathy Cambre Hampton, Arkansas

10/25/98 04:41:36

Name: Jesseca Harris	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: My grandmother and uncle had it and my mother has it. I have symptoms of PKD.	What's your age/gender?: 22/female	What do you live? List state, area or country: Fayetteville, Arkansas
Is it alright for others to e-mail you?: yes

Comments:

10/21/98 15:09:39

Name: Tamara Boblenz	My URL: Visit Me
My Email: Email Me	Do you have PKD? Approximately how much kidney function do you have?: no

Comments:

10/21/98 04:17:22

Name: Henry	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Full Function	What's your age/gender?: 38 male	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: ca.	Is it alright for others to e-mail you?: yes

Comments:
I was diagnoised with PkD in 1991 and I went years without any problems, now I'm having severe pain at times and my kidneys are twice the size they should be is this normal. I still have good function but in a lot of pain!!!!! someone please talk an E- ail me THANKS

10/21/98 01:03:47

Name: Edward Kryder	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/ about 90%	What's your age/gender?: 46/m	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Al	Is it alright for others to e-mail you?: yes, please

Comments:
I was diagnosed in July; lots of cysts both kidneys and liver. There's a long history of PKD in my Dad's family. It has claimed many lives from each of the last four generations including my Dad at age 50 in 1971. As of yet I haven't seen a nephrologist o ly my family doctor. I have a couple of questions for anyone out there kind enough to answer. First, I know every case and every patient is different but is it possible for someone with still such good function to experience terrible back and flank pain. ven with so many cysts and some bursting ocassionally my doctor doesn't seem to think the disease is the cause of the pain. I disagree with him! Also, again I know every case is different, but I would love to hear from different folks about the time frame involved in your loss of kidney function.

10/16/98 05:54:36

Name: Judie	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?: 43 Female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Iowa	Is it alright for others to e-mail you?: yes

Comments:
I am interested in talking with others who have Polycystic kidney and liver disease. Two years ago I had 70% of my liver removed due to the massive growth from the cysts. Over 10 pounds of liver tissue was removed. My father had over 18 pounds of liver removed as well as already having had a kidney transplant in 1985. The liver surgery is a very difficult one but my liver had grown so large it was compressing the vena cava coming out of the heart. I would have died from loss of blood flow with out the surgery. I'm interested in talking to others who may have had a liver resection and fenestration.

10/10/98 06:46:22

Name: Helene	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: child has A(R-D)PKD	What's your age/gender?: he is 8	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: going to have one	What do you live? List state, area or country: Long Island NY	Is it alright for others to e-mail you?: yes

Comments:
after all these years they think he may have ADPKD and not ARPKD but neither parents have the disease

10/04/98 18:19:49

Name: Tom Grant	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?: 45 Male	Are you on Dialysis/what kind?: not yet
Do you have a kidney transplant?: not yet	What do you live? List state, area or country: Washington State	Is it alright for others to e-mail you?: Yes

Comments:
This past few months I have diagnosed as being Diabetic, having Hemochromatosis, and now PKD. Is their some connection between this diseases?

10/02/98 20:23:57

Name: Lorne Kinsella	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?: 35/m	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Ottawa,Canada	Is it alright for others to e-mail you?: Yes

Comments:
I was diagnosed with PKD at age 16, it has ruled my life. I feel fine but, am living with the knowledge that my way of life might change. I tend to live for the moment. This has caused some greif in my relationships. I am looking to talk to others who have PKD and find out how they deal with it mentally. Anyone who would like to chat via e-mail, I would like to hear from you.

10/02/98 01:05:32

Name: Eula J Ortman	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 10%	What's your age/gender?: 59/f	Are you on Dialysis/what kind?: yes/ site hemo
Do you have a kidney transplant?: no	What do you live? List state, area or country: Ohio	Is it alright for others to e-mail you?: yes

Comments:
I was diagnoised with PKD in 1973 and managed with low protein diet to avoid dialysis until April 1998. I inherited from my Moms' family - my brother and I have PKD - not my sister. My brother had a transplant 1998 and doing well. My Mom was on PD and then hemo before she passed away at age 77. I teach Adult Education classes, work 40 hr. job and own two business - keep positive attitude and life isn't too different then before dialysis. I have done alot of research on diet(phosphorus/potassium) which I will be glad to share.

09/28/98 19:31:25

Name: Char	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/50-60%	What's your age/gender?: 55/f	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Illinois	Is it alright for others to e-mail you?: yes

Comments:
I have a long family history of PKD. I am quite pleased to see this web site. It puts a wealth of information in one place. I am doing pretty good with PKD - not too many symptoms - but my kidneys are quite huge. The last sonagram was a year ago and t e kidneys measured 25 cm. and a month ago my creatinine was 2.3.

09/25/98 11:22:16

Name: bill	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?: 33 male	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: NC USA	Is it alright for others to e-mail you?: yes

Comments:
My mother had PKD,I hope I don't pass it to my kids. I really would like to see research beat PKD so my kids don't see my pain.

09/20/98 01:01:59

Name: Jude	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?: 43/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: ohio	Is it alright for others to e-mail you?: yes

Comments:
I am the only one in my family with PKD so I don't have anyone else's experience to draw on. I am trying to find information about diet and anything else about pkd that could help me. Thanks!

09/17/98 19:47:15

Name: Greg Macy	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?: 37/male	Are you on Dialysis/what kind?: hemo
Do you have a kidney transplant?: not yet	What do you live? List state, area or country: Sacramento,CA	Is it alright for others to e-mail you?: yes

Comments:
I've been on dialysis since 5/29/98. I've had bleeding from both kidneys and finally got my doctor to agree to remove them. It should be soon I'm tired of the pain. I think this is great to have a chat room for PKD patients. Not many people know what it is or have even heard of it.

09/17/98 17:36:09

Name: Suzanne Kline	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes (just diagnosed, 2/98)	What's your age/gender?: 42/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: San Diego, CA	Is it alright for others to e-mail you?: yes

Comments:
I AM NEWLY DIAGNOSED IN 2/98 AND HAVE BEEN FOLLOWING A LOW PROTEIN VEGETATIAN WITH SOME FISH DIET SINCE THEN. I HAVE LOTS OF PAIN, ESPECIALLY IN THE RIGHT KIDNEY AREA ON A DAILY BASIS. I HAVE BEEN DISCOURAGED IN HAVING TO JUST DEAL WITH THE PAIN LEVEL. MY LABS ARE STILL IN THE NORMAL RANGE, HOWEVER MY KIDNEYS ARE COVERED WITH CYSTS. I AM DOING ANYTHING I CAN TO KEEP MY KIDNEYS FUNCTIONING WELL, I DO NOT SMOKE, DRINK AND FOLLOW A FAIRLY STRICT DIET. I USE OXYCONTON FOR THE PAIN AND WOULD LOVE SUGGESTIO S ON PAIN CONTROL. THANKS FOR ANY HELP!

09/16/98 20:55:45

Name: rose spencer	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?: 60+ F	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: yes in 1987	What do you live? List state, area or country: michigan	Is it alright for others to e-mail you?: yes

Comments:
I didn't know I had pkd until my kidneys completely failed and I was started on capd. I was on capd 2 1/2 years and then got a transplant from my daughter My biggest complaint is bone pain in feet and fatigue in legs and feet. I read that cyclosporine can cause this. I would be interested in hearing if anyone has an answer to this problem. f

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