PKD Information Page (Main Page)

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12/20/00 17:08:20
Name: kate My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/full i think 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: Southampton England Is it alright for others to e-mail you?: Yes

Comments:
I am the first person in my family to have this disease. Any others with no family history out there.


12/15/00 19:32:40
Name: Linda Driessen My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: no/ my Dad/30-40% What's your age/gender?: male age 78 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Maryland Is it alright for others to e-mail you?: yes

Comments:
My father is presently hospitalized with a blocked bile duct, believed to be caused by a cyst. Both kidneys, his liver and pancreas are covered with cysts. he is somewhat of an enigma because of his age and the fact that this deisease was not diagnosed u til (less than) two years ago. In my reaserch, I have found that the vast majority in the medical field are unfamiliar with Polycystic Disease. It is very frustrating. We are looking for a physician that specializes in this field. Any help would be grea ly appreciated. Thank you.


12/15/00 19:09:39
Name: Denise My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: YES / FULL SO FAR What's your age/gender?: 47 / 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: TUCSON,AZ.

Comments:


12/15/00 03:41:39
Name: Jennifer Vanderveld My Email: Email Me Do you have PKD? Approximately how much kidney function do you have?: Yes/30% total function
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: Lorton, VA USA Is it alright for others to e-mail you?: Yes...please!

Comments:
Any comments or thoughts that can be shared with me and my husband regarding children would be greatly appreciated. We are a bit apprehensive but have been told many do get pregnant.


12/13/00 04:04:24
Name: Laura Allen My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes -I have 100% now 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: Southern Illinois Is it alright for others to e-mail you?: yes

Comments:
I am on high blood pressure medication and right now I feel great. My dad died of polysistic kidney disease in 1979. I am curious if there have been any advances since that time to prolong life.


12/12/00 14:58:51
Name: Linda My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/transplanted What's your age/gender?: 53/Female Are you on Dialysis/what kind?: I was on hemo/dialysis
Do you have a kidney transplant?: yes Where do you live? List state, area or country: Florida, USA Is it alright for others to e-mail you?: yes

Comments:
I am what they call the walking, talking example of how kidney transplant should go. I was very ill and practically tapped danced off the operating table after transplant. Literally, I felt that much better so quickly. I was 43 years old when I went in o renal failure, although diagnosed at 30 years of age. If I can be of any help to anyone, do not hesitate to contact me.


12/12/00 00:44:48
Name: Mandar Marfatia 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?: 26/Male Where do you live? List state, area or country: Athens, GA
Is it alright for others to e-mail you?: Yes

Comments:
Hello, My nephew (age: 1.5 yrs) is suffering from PKD. He is in India and I am looking for possible cure and recommended diet for him.


12/06/00 06:55:33
Name: Kathi Davenport My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes,98% 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: North Carolina Is it alright for others to e-mail you?: yes

Comments:


12/04/00 19:31:01
Name: Johan Rosman 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?: 44/M Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Netherlands Is it alright for others to e-mail you?: yes

Comments:
I am a nephrologist that used to work a lot with protein restricted diets (sse list on this site). I wrote a book about my scientific work. Copies of it are vailable for 10 dollars (that is exactly the price the book has costs me, I will pay the shipping) All scientific information concerning these diets is included. If you are interested please contact me on my e-mail doctor@bart.nl. Johan Rosman, MD.


12/03/00 04:43:39
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12/02/00 06:39:34
Name: Bob Frase My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: very little What's your age/gender?: male Are you on Dialysis/what kind?: yes/ccpd&capd
Do you have a kidney transplant?: waiting Where do you live? List state, area or country: Pasco, Wa Is it alright for others to e-mail you?: yes

Comments:
Doctors have not told me that I might die from this and they seem unable to treat pain and itching. I'd like to hear from others who have it.


12/02/00 05:53:33
Name: Gunadi 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?: 29/M Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: Bandung, Indonesia Is it alright for others to e-mail you?: Yes, Please.

Comments:
I have an elder brother, who has always had cysts since he was born, as the doctor said. He's 35 years old. Recently, he's been diagnosed for PKD, and it's critical, and local doctors said, it can not be operated. They told him to go on diet (sugar, salt, oil, protein etc).If he does it, then he would have about 10 years to live. Otherwise, he would only have 5 years. But, we dont like to give up trying to find ways to cure PKD, so he can have more life with his wife and kids. I would really appriciate tho e who can give me information on this subject, especially those who had this problem in the past and are cured, or at least feel much better. Please, please email me. Thank you so much.


11/27/00 21:54:38
Name: Caroline 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?: 35 f 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 just being diagnosed. I have cysts on my kidneys, liver and ovaries. My mother was never diagnoised with this disease, although had many kidney problems during her adult life. She passed away with heart failure aged 71 in 1997. Are heart problems one of the symptons of this disease I would be interested to hear from anyone with info. Thank you


11/27/00 11:38:46
Name: Sharyl Heickman 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?: 44/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 Is it alright for others to e-mail you?: yes

Comments:
just recently diagnosed. having trouble finding a doctor familiar with pkd. also insulin-dependent diabetic. any suggestions?


11/27/00 11:38:30
Name: Sharyl Heickman 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?: 44/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 Is it alright for others to e-mail you?: yes

Comments:
just recently diagnosed. having trouble finding a doctor familiar with pkd. also insulin-dependent diabetic. any suggestions?


11/24/00 20:12:29
Name: Angie My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: No, father does with 19% kidney function What's your age/gender?: He is 51 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: VA Is it alright for others to e-mail you?: yes

Comments:
I would appreciate any information about the inheritance of this disease. I know I do not have it I have been tested. I have two small children and would like to know since I don't have it could I possibly pass the gene on to them? I am currently underg ing initial tests to determine if I am a match for my father to donate a kidney. I would be interested also in any information about the surgery. Please feel free to email me using the subject line PKD. Thanks and God Bless.


11/24/00 04:26:26
Name: Laurie Buddle My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes about 25% What's your age/gender?: Male 43 Are you on Dialysis/what kind?: No not yet.
Do you have a kidney transplant?: Hoping to mid 2001-Wife! Where do you live? List state, area or country: Paraparaumu. N.Z. Is it alright for others to e-mail you?: Yeah thats O.K.My Father

Comments:
My Father had a transplant in 1970 and is still going strong!Brother and Sister as well in the last 10 yrs or so,nothing like keeping it in the family!


11/23/00 15:49:04
Name: Bill Satterfield 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?: 56/MALE Are you on Dialysis/what kind?: NO
Do you have a kidney transplant?: NO Where do you live? List state, area or country: WEST VIRGINIA/USA Is it alright for others to e-mail you?: YES

Comments:
HAVE JUST LEARNED I HAVE PKD


11/21/00 21:12:28
Name: SANDY My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: YES,40% 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: MICH Is it alright for others to e-mail you?: YES

Comments:


11/21/00 04:16:53
Name: WAYNE My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: YES, 97% What's your age/gender?: 42/M 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, CA Is it alright for others to e-mail you?: YES

Comments:
I'VE KNOWN FOR OVER 20 YEARS THAT I HAVE PKD. LUCKLY, I HAVE BEEN RELATIVELY HEALHY AND PRETTY MUCH PAIN FREE. OCCASIONALLY I WILL HAVE A CYST RUPTURE AND WILL EXPERIENCE PAIN AND PASS BLOOD FOR 2-3 DAYS. I WAS TOLD BY MY PHYSICIAN TO TAKE ONLY TYLENOL NE ER IBUPROFEN FOR THE PAIN. CURRENT RESERCH SHOWS THAT THE BEST WAY TO SLOW THE GROWTH OF CYSTS IS TO KEEP BLOOD PRESSURE UNDER CONTROL ALSO TO LIMIT THE AMOUNT OF PROTEIN. I HAVE BEEN ON BLOOD PRESSURE MEDICATION FOR 10 YEARS.


11/20/00 07:07:01
Name: Joe Hutchinson My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: No, friend does What's your age/gender?: Him: 40's, M Where do you live? List state, area or country: Colorado
Is it alright for others to e-mail you?: yes

Comments:
I'm a Crohn's Disease sufferer. I friend w/PKD is having some bad times and I figured my "natural med" interests would help as PKD can attack the GI tract. I take a "brain food combo" which helps many symptoms that go with these sorts of chronic problems. Availible at Vitamin Cottage locally, "Power Thought" by Bluebonnet is a Phosphatidyl Serine/Choline formula with B-6, B-12, Pantothenic and Pyroglutamic acids, DMEA, Tyrosine, Taurine, and Ginko Biloba. Compared to other combos at Vitamin Cottage and Alf lfas/Wild Oats it is a good deal for your money ($20/month for me). Look up some of the ingredients that you may find applicable to PKD. I also use 100 MG of "flushing" Niacin once a week before a meal to clear my circulation, it seems to help nutrient fl w to my body and removes toxins perhaps assisting th kidneys. This may be a little tough on late stage patients so ask your health provider. Lastly, many with disorders that are difficult to treat have found help with Chelation Therapy. I am a member of t e Friends of Chelation Society (lifetime membership: $10) and think some of you should hookup to see if there's help to be had there. Good luck to you, ---Joe Hutchinson


11/16/00 21:25:09
Name: Bob Dossett 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?: 37/M Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: Houston, TX Is it alright for others to e-mail you?: YES

Comments:
I just found out I have this disease. I can't locate anyone in my family that has ever had this. I would like to hear from others and would like to offer help if I can. Also, would like to know if researchers are getting close to a cure. email me anytime od Bless


11/15/00 14:04:51
Name: Kristen Waters My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes, About 80% What's your age/gender?: 25/F Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: Atlanta, Georgia Is it alright for others to e-mail you?: Yes, Please

Comments:
I would love to hear from others with PKD. It means more to hear from others and how they are coping! I would like to hear especially from women who have had children and if having PKD affected their pregnancies or how they feel after giving birth.


11/14/00 19:06:55
Name: Donna Braun My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/ 22% 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: Burleson, Texas Is it alright for others to e-mail you?: yes

Comments:
I am looking for anyone who might know information on helping prolong your kidney function. My kidney function has started to fail rapidly. I lost 7% in the past 2 months and am told that I will be on dialysis in 6-12 months. I want to slow this down an find a good doctor specializing in this area.


11/09/00 18:55:02
Name: Connie Alden My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: no my husband does What's your age/gender?: I am 41 husband 43 Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: not yet Where do you live? List state, area or country: Illinois Is it alright for others to e-mail you?: yes

Comments:
My husband and his mother found out 20 years ago that they have polycsytic kidney after the death of my mother in laws second sister. I've spent a lot of time doing as much research as possible into this disease. I'm still looking for more information t increase my knowledge on this.


11/09/00 02:01:11
Name: Amy Hagemeier 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?: 19/f Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no Where do you live? List state, area or country: currently in honolulu, hi Is it alright for others to e-mail you?: yeah

Comments:
great thing you're doing here. got mine from my dad who got it from his mom. he's 50 now and still going, but it's strange...like a time bomb. what a bizarre way to have to deal with mortality. but i'm interested in just communicating with other peopl with PKD. i think it's important. drop me a line or two, if you'd like.


11/08/00 19:05:15
Name: Erica Brown My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes i don't know What's your age/gender?: 15 Are you on Dialysis/what kind?: yes pkd
Do you have a kidney transplant?: no Where do you live? List state, area or country: Continental Ohio Is it alright for others to e-mail you?: I dont have one but you can call at 1419 596- 3325

Comments:
I think there should be a cure for this disease Because my mom,and sister has it too.Idont think t's right that ever one who has it is suffering with this disease!


11/08/00 19:03:30
Name: Erica Brown My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes i don't know What's your age/gender?: 15 Are you on Dialysis/what kind?: yes pkd
Do you have a kidney transplant?: no Where do you live? List state, area or country: Continental Ohio Is it alright for others to e-mail you?: I dont have one but you can call at 1419 596- 3325

Comments:
I think there should be a cure for this disease Because my mom,and sister has it too.Idont think t's right that ever one who has it is suffering with this disease!


11/07/00 21:33:51
Name: jeanne frazier My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, none What's your age/gender?: 63 Are you on Dialysis/what kind?: yes, hemo
Do you have a kidney transplant?: no, rejected Where do you live? List state, area or country: va. Is it alright for others to e-mail you?: yes

Comments:
my phosphorus level continue to be high. i am taking renagel and now have developed a rash. i am wondering if the rash is a side effect from the drug. or if it has something to do with the high levels of phosphorus? any info would be appreciated.


11/05/00 23:47:08
Name: Bob Arbin My URL: Visit Me My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes - nearly 100% What's your age/gender?: 46 Male Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No Where do you live? List state, area or country: Wiltshire, U.K. Is it alright for others to e-mail you?: Yes

Comments:
Trying to get a feel for my prognosis. I think I am doing pretty well (except for the blood-pressure!) but my father died from an aneurysm at 46, my brother at 51 from a heart attack (transplant at 46) and my sister from an aneurysm at 50 - all had PKD. My kidney function is near-normal, but I feel that I am beginning to enter risky teritory age-wise! Any thoughts welcome - thanks.




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