Comments:
My husband was just recently told he has this diease and the doctors are saying and doing very little to eliminate the pain and fatigue. Other than increase in high bld press. meds, not much has transpired. What do we have to look for and how long is th progression until kidney failure? thanks

03/16/99 05:08:59

Name: Linda	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?: 41 - Female	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Long Island, New York	Is it alright for others to e-mail you?: Yes

Comments:

03/16/99 04:20:02

Name: Barbaara	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/about 33%	What's your age/gender?: female 54	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: NJ	Is it alright for others to e-mail you?: ABSOLUTELY

Comments:
I was diagnosed in 1964 and have high blood pressure which is controlled by accupril, my potassium is elevated so I have to severely limit my intake of fruits and vegetables but I also take meds for this and have it under control. I have no physical symp oms or discomfort which is a plus. I'm due for my complete six mo. work-up next month, so we'll see where things stand. I would love to talk to others who are at this approximate stage.

03/15/99 02:42:48

Name: michelle	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?: 30/F	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Kansas	Is it alright for others to e-mail you?: yes

Comments:
What is a normal creatin level. Please tell me more about the low protein diet. This is a great website.

03/13/99 18:24:28

Name: Jeanine louviere	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?: I am a 38 year old female	Are you on Dialysis/what kind?: I am not on dialysis
Do you have a kidney transplant?: no	What do you live? List state, area or country: Bourg, Louisiana	Is it alright for others to e-mail you?: Yes

Comments:
I am a 38 year old female. I inherited the disease from me father. He has had a transplant for over 10 years which is very good. I have one older sister who also has it plus an older brother and a younger brother. I have 3 children who had a 50-50 cha ce of having it. My oldest son and my 9 year daughter do not have it but my youngest son who is 7 years old has it. We are participating in research in Denver,CO. My son is also participating in a Blood Pressure study also. He is taking Vasotec 10mg B D. If any one wants more information on the Research please contact me at [email protected]. I have been knowing I have pkd since I was 22 years old and have been on blood pressure pills just as long.

03/12/99 22:49:51

Name: Jane Insall	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?: 39,white	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Austin, TX	Is it alright for others to e-mail you?: Yes

Comments:
My ex-husband has polycystic disease of the kidneys and so does his brother. Their mother just recently died from this disease. We have a 5-year-old son together who has not been diagnosed. The doctors have told us not to have our son tested because their is nothing they can do if he does have it, so they are saying just wait until he is older.

03/12/99 18:09:00

Name: Christine Frazier	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/ 100% so far :-)	What's your age/gender?: 29/ female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Virginia Beach, VA	Is it alright for others to e-mail you?: yes

Comments:
I'm really happy to see a site like this one, with so much information and insight from others who have this same problem. I was diagnosed four years ago with PKD when I was pregnant with my daughter and had an ultrasound done. My father had PKD and die from complications. He also did not take as good care of himself as he should have. I'm interested in finding out more on the low protein diet and other ways to prevent (or slow down) the progression of the cysts. Also I had and do have cysts or "bleb " on my lungs. In fact I was hospitalized for a collasped lung several years ago because one ruptured. Has anyone else had that happen??? Let me know. Thanks, Christine

03/11/99 03:12:55

Name: Lynne Brennan	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?: F 46	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Calgary, Ab Canada	Is it alright for others to e-mail you?: yes

Comments:
I found out I had PKD about 3 years ago through an ultrasound. My doctor doesn't seem to concerned although she said I have large cysts in my kidneys and smaller ones in my liver. I've just found this site and am not up on what I should be asking the doct r - such as creatine counts etc. Should I be seeing a specialist? My siblings have been tested and are OK. I have two young girls and they haven't been tested yet. What sort of symtoms should I be looking for? Lots of questions!

03/10/99 05:06:38

Name: Paula	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes not sure of function	What's your age/gender?: 34 female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: south dakota	Is it alright for others to e-mail you?: yes

Comments:
I was diagnosed with pkd at the age of 20 after giving birth to my fist son. My blood pressure was elevated as well as having a family history of polycystic kidneys. I am interested in talking to other people who have this disease. Some one in my own li ing area or state would be nice

03/10/99 01:33:34

Name: jeanine louviere	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?: 38 female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: bourg louisiana	Is it alright for others to e-mail you?: yes

Comments:
I HAVE BEEN KNOWING THAT I HAVE PKD SINCE I WAS 22 YEARS OLD. I INHERITED IT FROM MY FATHER. I HAVE BEEN ON BLOOD PRESSURE PILLS FOR THE SAME AMOUNT OF TIME. I HAVE THREE CHILDREN. MY SON WHO IS 7 ALSO HAS THE DISEASE HIS NAME IS DYLAN. HE IS PARTICIPAT NG IN A BLOOD PRESSURE STUDY AT CHILDREN'S HOSPITAL IN DENVER, CO. HE IS CURRENTLY ON VASOTEC 10mg BID. I AM ON TARKA 240mg ONCE A DAY FOR MY BLOOD PRESSURE.

03/09/99 03:02:36

Name: Sylvia	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?: age 50/ female	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Lethbridge,Alberta,Canada	Is it alright for others to e-mail you?: Yes

Comments:
I was told I had PKD five years ago, and have since learned as much as I could about the disease. I have both kidney and liver cysts and pain most of the time, some days are better than others. I have never been able to understand what causes the pain ot er than shopping, which my husband says I need to do less of anyhow. I am the only one in my family to have PKD, the Dr. says I'm a mutant. My children have been tested but nothing has shown yet. I'm very excited about finding this site where you can tal to someone else and they will understand where your coming from, as I know no one else with this condition.

03/08/99 06:11:46

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

Comments:
I found I have PKD through the use of ultra sound analysis. My blood pressure is med high and I had blood in my urine. I have had several instances of internal infections . Found by mens of urine analysis.These infections were controlled by use of antibio ics.

03/08/99 04:45:01

Name: Dan Bunnell	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: havent been tested	What's your age/gender?: 19	Are you on Dialysis/what kind?: no`
Do you have a kidney transplant?: no	What do you live? List state, area or country: North Dakota	Is it alright for others to e-mail you?: yes

Comments:
i am just trying to get some info in PKD. my mother has it, and i may have PKD, so i am jsut trying to learn as much as possible

03/06/99 03:32:44

Name: Shanda Jones	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?: 28 female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: NORTH CAROLINA	Is it alright for others to e-mail you?: yes

Comments:
I would like to talk to people about kidney stones

03/06/99 01:29:49

Name: Traci	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?: 24	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: NC	Is it alright for others to e-mail you?: yes

Comments:
I have known all of my life that I have PKD. My mother died from complications due to PKD. Now that I am a mother we have found out that my son also has it. I have had high blood pressure since I was 15. It is now under control. I would like to hear rom others who have information on PKD.

03/05/99 22:34:07

Name: Mike Kimmelshue	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/ 60 in one &30 in one	What's your age/gender?: 46 yrs. male	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Lufkin,Texas	Is it alright for others to e-mail you?: yes

Comments:
Just found out that I have pkd today. would like to find out about your Organization.

03/05/99 18:41:38

Name: Lynn Rosenbach	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes. 33%	What's your age/gender?: 45 -- F	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:

03/05/99 01:46:10

Name: Samuel Bouabane	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: We have a history of ADPKD in our family	What's your age/gender?: Male	Are you on Dialysis/what kind?: No
Do you have a kidney transplant?: No	What do you live? List state, area or country: Belleville, Ontario, Canada	Is it alright for others to e-mail you?: yes

Comments:
150 Dundas Street East Belleville, Ontario K8N 1C7 Canada To Whom It May Concern, I am a grade 10 student, attending Moira Secondary School in Belleville, Ontario, Canada. I am currently conducting some research on the topic of Polycystic Kidney Disease because my mother and myself wanted to enrich our minds about a disease which has een in our family, and possibly in us. Therefore, I would extremely grateful if you would please send any information that could aid my research campaign. Thankyou very much for you time and assistance. Yours truly, Samuel Bouabane

03/05/99 00:45:32

Name: Diana McClanahan	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?: Female 53	Are you on Dialysis/what kind?: Peritoneal
Do you have a kidney transplant?: NO	What do you live? List state, area or country: W. Va. Staint Albans	Is it alright for others to e-mail you?: YES

Comments:
Would like to talk to others on same kind of dialysis. Only been on since Oct.

03/04/99 17:27:11

Name: Sissel Sivertsen	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes, still 100%	What's your age/gender?: 44, F	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Norway, T�nsberg	Is it alright for others to e-mail you?: yes

Comments:
My grandfather died of this, a aunt died last summer, my mother have had several operations and have now large cysts on both kidneys - also cysts on the liver (and the liver has grown together with the kidney). I have wandering PKD (the kidneys wander up nd down), cysts on the liver and have had a lot of infections, but as far as I know - the kidneys is still functioning 100%. I would like to get in touch with others with this disease in Norway - it is very hard to find information about this in Norway... Please contact me.

03/03/99 21:59:11

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

Comments:

03/02/99 05:15:19

Name: Mike Rubenstein	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes - not sure / good function	What's your age/gender?: 44 / Male	Are you on Dialysis/what kind?: n/a
Do you have a kidney transplant?: n/a	What do you live? List state, area or country: Houston, Tx	Is it alright for others to e-mail you?: yes

Comments:
Fortunately I am currently in excellent health and very athletically active (I claim to be in transplant training - you never know). I am curious as to what precautions can be taken to "slow things down". What type of diets, drugs, nutritional supplements and excersizes are beneficial. Any suggestions would be appreciated. Grandfather, Mother, Sister and I all diagnosed positive. Is it close to 100% that offsprings have the disease? Hope you all noticed Florence - 73 and no transplant and no dialysis. Awesome! Let's all hope (and pray) for the best.

02/20/99 03:50:46

Name: Joan Ledet Hammon	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes. good function	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: Holland, MI	Is it alright for others to e-mail you?: yes

Comments:
I need to learn more about PKD. My 2 brothers, my sister and I have all inherited this disease. We are all doing ok for now. But need to know what to expect.

02/18/99 20:30:57

Name: Tabitha Mohon	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?: 27/Female he is 38	Are you on Dialysis/what kind?: he is not at this time
Do you have a kidney transplant?: not at this time	What do you live? List state, area or country: Dallas, Texas	Is it alright for others to e-mail you?: yes

Comments:
My husband has PKD. I would love any information anyone can provide reguarding pain relief. He is currently taking Lortab 500mg two to three every four hours. Sometimes the pain is so bad he can barely move. He spends most evenings on a heating pad to help relieve the muscle tension from the pain. He also has kidney stones. If you have any information that my be of assistance please email me. Thanks.

02/17/99 01:47:03

Name: Melaine Beckett	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes/not known	What's your age/gender?: 34/female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: maidstone,kent.england	Is it alright for others to e-mail you?: yes love to hear from everyone

Comments:
I was diagnosed with PKD 3 years ago. My GPis not concerned at all and i don't really know anything about PKD.I was just told i had it and that was that.I do have bad pains in my flank and have terrible headaches. is this to do with PKD? I would appreciat any info on PKD. Ana would especially like to hear from people from the uk.Also are there anythings i should be aware of aboutPKD,and should i be having any tests etc?hope to hear from you all soon. love melaine

02/15/99 19:39:31

Name: Chris Fisher	My Email: Email Me	Do you have PKD? Approximately how much kidney function do you have?: yes, still at 100%
What's your age/gender?: 45/F	Are you on Dialysis/what kind?: not at this time	Do you have a kidney transplant?: no
What do you live? List state, area or country: Lancaster County, PA	Is it alright for others to e-mail you?: yes

Comments:
Most of the woman have/have had varying stages of PKD. My mother passed away, she was on dialysis, but not eligible for a transplant. My sister had her transplant about 9 years ago and is doing well. I don't have any problems yet.

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