| Name: Tiernan Leahy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes. I have about 40% function. | 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: Northern California | Is it alright for others to e-mail you?: Absolutely |
Comments:
I was diagnosed at 16. I was training for the Olympics and began having severe headaches (later determined to be BP related). Tests revealed one nonfunctioning kidney and the cycts had already spread to the other one. I believed that it skipped generations. Am I wrong? Am I now understanding that I have a good chance of passing this along to my children if I am so blessed with them?
| Name: Tracy Ireland | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, i do. im not sure.. most of it | What's your age/gender?: 15/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Vacaville, CA | Is it alright for others to e-mail you?: yes |
Comments:
Hi. As my dad already told you, we have PKD. I am 15 years old, and I found out about a year and a half ago when I had severe migraines... Well, I had already had them for a year, and so my doctor decided to take a peek at my kidneys with an ultrasound. There were already a few cysts on my kidneys. I've learned to deal with it, and if there is anyone out there who needs someone to talk to, you can e-mail me, and I'll listen.
Chers for your time!
-Tracy (Spoon)
| Name: Ron Ireland | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 75% | What's your age/gender?: 45 Male | Are you on Dialysis/what kind?: NO |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: Vacaville, CA | Is it alright for others to e-mail you?: Yes |
Comments:
I was diagnosed 10 years ago. My Father, Uncle, and Grandmother have died from this disease. One of my three kids has it also. I watch my blood pressure and have complete physical every 6 months or so. Many liver cysts as well. Back pain is the hardes
to deal with. This is a good site - I appreciate knowing I'm not in this alone.
| Name: Sharon Moorer | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes / 85% | What's your age/gender?: 37 / F | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Michigan | Is it alright for others to e-mail you?: Yes |
Comments:
If you are in Michigan and interested in joining our Friends Support Group, please contact me at (313) 273-7577.
| Name: Lauren | 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?: 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:
It's really amazing to see how many people have pkd and how little is known about the disease. One thing is for sure, protect your kidneys by controlling your blood pressure, take your bp med and have regular bp checks. Don't take otc meds without checking with doc!!! No Motrin. keep the faith!!!! (brother & father both have pkd)
| Name: rey raguindin | My URL: Visit Me |
| My Email: Email Me | What's your age/gender?: 33 |
| Is it alright for others to e-mail you?: yes |
Comments:
father has kidney desease
| Name: Mirna Rivas | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: don,t know |
| 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: Richmond Virginia |
Comments:
please feel free to write to me 119 Emberwood CtRichmond VA 23223 please I would like to hear from you I don't know anyone with kidney disease and I would promise to write back... Mirna Rivas
| Name: lisa werner | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: i dontknow/family members do | 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: taylor,mi | Is it alright for others to e-mail you?: yes |
Comments:
I'm not sure if I have the disease or not. My grandmother had it and two aunts and my cousin is suffering from it now. I have the back pain,headaches and a lot of other things that are going on that I'm not sure are related. I could not get my former doctor to run the test needed. The only thing they would do is xrays
and urine test.. I have a new doctor now hopefully a better one and have a appt. 0n july 30th.The problems I have I think at times are driving me out of my mine. I just need to know what is causing the pain that I have. thank you for having this site I can now get info for my cousin Terry. Thank you Lisa Werner
| Name: Rex Hung | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, Right Now is OK | What's your age/gender?: 27 male | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Canada, Toronto | Is it alright for others to e-mail you?: Welcome |
Comments:
I would like to make friends with PKD.
| Name: cj | My URL: Visit Me |
| My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: no |
| Is it alright for others to e-mail you?: yes |
Comments:
| Name: Donna Widdowson | 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?: 49, Female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Baltimore, MD | Is it alright for others to e-mail you?: Yes |
Comments:
I am interested in all ongoing research/upcoming clinical trials, etc.
Also, special diets if anyone knows of anything.
| Name: Priscilla | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes very little | What's your age/gender?: 44-Female | Are you on Dialysis/what kind?: yes Peritoneal |
| Do you have a kidney transplant?: on waiting list | Where do you live? List state, area or country: Ga. | Is it alright for others to e-mail you?: yesDia |
Comments:
Dialysis is better than the alternative.
Waiting for the call for a transplant is difficult.
| Name: Ira | 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?: 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: Spokane, Wa | Is it alright for others to e-mail you?: Yes |
Comments:
Can feel my right side kidney throbing. I am on a high protein diet, but the condition started when I started drinking very high caffeine coffee. How can I stop the throbbing?
| Name: Lisa Davies | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes(infantial)-no function. | What's your age/gender?: Female age 20 | Are you on Dialysis/what kind?: was on CAPD |
| Do you have a kidney transplant?: yes | Where do you live? List state, area or country: England. | Is it alright for others to e-mail you?: yes |
Comments:
| Name: rick | My URL: Visit Me | My Email: Email Me |
| What's your age/gender?: female | Are you on Dialysis/what kind?: not yet | Where do you live? List state, area or country: jamaica |
| Is it alright for others to e-mail you?: yes |
Comments:
| Name: Dawn Woods | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes / approx. 90% | 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: Northern Kentucky | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Krystal Winters | 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?: 11, girl | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Lee, Massachusetts | Is it alright for others to e-mail you?: yes, wold like that |
Comments:
Krystal is 11 years old, and has been diagnosed with pkd for 2 years, her dad has it as well, and her 2 brothers have to be tested yearly, they are 6, and 7.
| Name: Gerald Munsey | 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?: I was Hemo |
| Do you have a kidney transplant?: Yes May1,1999 | Where do you live? List state, area or country: Ohio | Is it alright for others to e-mail you?: Yes |
Comments:
Doing what docs. tell me to do.Taking the pills i need to take.Everything going well so far.
| Name: Heidi Wagner | 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?: 23 / F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Seattle, WA | Is it alright for others to e-mail you?: yes |
Comments:I was diagnosed at age 9 with PKD and I am healthy with full function of both kidneys. My father passed away at age 51, he had PKD and was on dialysis at the time of his death. I have been told little about precautions, other than diet/exercise, both of which I practice each day. I am doing research to find out specifically what kind of diet I should be on, and to gain a greater understanding of what this disease is, and what my prognosis will be later in life.
| Name: Amy Proulx | My URL: Visit Me |
| My Email: Email Me | What's your age/gender?: female/17 |
| Where do you live? List state, area or country: Ontario, Canada |
Comments:
I don't have this disease but I am affected by it, because someone I really care about has it. I wanted to know more about PKD and there are a lot of websites which are extremely helpful. My love goes out to all who are infected and affected by this disease.
| Name: Keith | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: I have it, yes. I believe I have most of my functions, if not all. | What's your age/gender?: 16male | Are you on Dialysis/what kind?: fortunately, i don't believe I"ll be doing that for some time |
| Do you have a kidney transplant?: nope, but if the time comes, God Bless who does | Where do you live? List state, area or country: central coast, CA | Is it alright for others to e-mail you?: sure thing |
Comments:
Just wanna say that God Bless all of you with this disease, even those who know somebody who had/has it. HE is looking over you, and you can always talk to Him, and He will understand you.
I am only 16, but am diagnosed with this horrible thing. My grandmother had it, dad has it, and now I do. May God help us find a cure or vaccine
| Name: Cathy Johnson | 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?: age 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: utah | Is it alright for others to e-mail you?: yes |
Comments:
I found out last september through a ultrasound that I have pkd. It was a shock because I was always told that it skips the women in our family. Ive had two brothers pass from it and one still doing very well. Ive also got nephews with it. I just take one
day at a time and not dwell on the future. Im in no pain . Take blood pressure medicine.
| Name: leesa leech | 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?: 29 female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: australia | Is it alright for others to e-mail you?: yes |
Comments:
I am trying to find more out about this condition not too many people can give me the answers I am looking for all the doctors keep telling me is ooh you had better take care of those kidneys. I was also wondering if other women experience more pain while pregnant??
| Name: Rachel Whitman | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Husband. Not sure. | What's your age/gender?: 30/M | Are you on Dialysis/what kind?: No. |
| Do you have a kidney transplant?: No. | Where do you live? List state, area or country: Nova Scotia, Canada | Is it alright for others to e-mail you?: Yes. |
Comments:
We found out that my husband has PKD last August 98, after his father was dx with this disease in July 98. I am so worried about him because he has never gone for the blood tests that the doctor wanted him to get done (even though I have pleaded with him). We have two daughters (ages 5 years and 3 1/2 years), I know that they have a 50% chance of having this disease also.....I'm scared for all of them. Please help, any letters will be greatly appreciated.
| Name: melissa c. | 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?: 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: charleston,sc | Is it alright for others to e-mail you?: yes |
Comments:
I would like information on medical insurance. Where can I get it? Also, has there been any possible connection between polycystic and fertility problems?
| Name: jim newsom | 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?: 49 male | Are you on Dialysis/what kind?: just starting pd |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: N.C. Stokes Co. | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Diane McLeod | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes-full | 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: northern california | Is it alright for others to e-mail you?: yes |
Comments:
I am a health care practitioner and am well-aware of traditional therapies available for this. I'm looking for alternatives outside the western way of thinking. My family history would suggest that I'll have another 20 years before I am symtomatic, but I'm not taking any chances. I live for today.
| Name: lizzy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: daugter-none in left kidney | What's your age/gender?: daugter-17 F | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Michigan | Is it alright for others to e-mail you?: yes, please help |
Comments:
2 weeks ago my daugter complained of back pain. Dr's visited showed blood in urine. Grandfather died of PKD-on dialyisis, but Amanda(Daughter) has had IVP, renal scan, cat scan, fluroscopes, etc.,etc.left kidney not funtioning and has "Horse shoed" removing it in June. Need advise ASAP. This bridging to her right functioning kidney has surrounded her Aorta and infererior vena cava. The Radiologist said she doesn't have PKD-but doesn;t know what it is yet. The non-func left kidney is approx 7-10 larger than rt one. It is full of huge cystic looking pockets. Has anyone ever experienced anything like this. Please help.
| Name: Steve Decker | My URL: Visit Me | My Email: Email Me |
| What's your age/gender?: 38 - male | 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 was on Dialysis for 1yr, then received a transplant from my sister. I have had the transplant for 4 months, everything is great now.
| Name: Sandra Glasper | 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?: 40 year old female | Are you on Dialysis/what kind?: Never on dialysis |
| Do you have a kidney transplant?: Yes. Donor brother | Where do you live? List state, area or country: MA by way of Alabama | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed with PKD in 1984. I suffered for 8 years with pain and swelling of both kidneys. Demerol eased the paid tremendously. Father and sister died from an aneurysm related to PKD. My son was diagnosed 3 years ago. Had a transplant in January 1997. Right nephrectomy April, 1997 and left nephrectomy January, 1998. Contracted CMV also. One month ago, was diagnosed with diabetes due to the prednisone. Am taking cellcept, neoral, prednisone, norvasc, lasex (for transplant) and glipizide for the diabetes. Had an extremely amount of hair growth, puffy face, acne, weight gain, trembles, burning of the hands and feet. You name it, I've dealt with it.
I'm sure I'm related to someone out there with this disease. I can only go back to my grandmother who lived in Wetumpka, AL. Any suggestions?
E:mail me anytime.
