Comments:
My mother became ill approximately 25 years ago and ended up having one and part of her other kidney removed because of PKD. At that time I was (12 yrs old). I was checked for the disease and found out that I had a few small cysts on both of my kidneys. I felt great up until about the last 3 years. I am on two different types of medication for High Blood Pressure. (Inderal LA & Monopril) I got pregnant 2 years ago and was taken off these drugs. Luckily after a very long and hard first pregnancy (bed rest for the last 3 months due to my extremely high blood pressure), I gave birth (cesarean birth) to a beautilful and healthy baby boy. Du ing the pregnancy I was getting alot of pain in my right side. After the birth of my son I lost most of the weight but found quite a large lump on my right side. I kept telling my husband that it felt like the doctors left something inside my stomach by m stake. Once I had gone to the doctor and had an ultrasound I have found out that my right kidney is covered with cysts and the lump is a cyst the size of a grapefruit. I also found out that my kidney on my left side has quite a few cysts one the size of a plum and my liver also has cysts on it! I have a constant ache/pain in my sides and upper stomach most of the time. My Mother had one and part of her other kidney removed approx. 20 years ago and is doing just fine without dialysis. However, I have 2 Uncles and also 2 Aunts who had been on dialysis and now have kidney transplants (3 of them within the past year). I am scheduled to have ultrasounds every six months to monitor the size of my cysts, blood tests and urine tests every three months to monitor my kidney function and have been told that with my family's history it is very likely that I will be in the same shoes as my aunts and uncles. No one will ever know how much I want to have a second child....but I guess it is out of the question.

06/11/98 10:27:05

Name: David Szankovics	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 1%	What's your age/gender?: Male /40	Are you on Dialysis/what kind?: Not right now
Do you have a kidney transplant?: yes	What do you live? List state, area or country: Norwich, Connecticut	Is it alright for others to e-mail you?: yes

Comments:
I am now going through the process of having my old kidneys removed becouse of size and other problems they are causing.I have done both types of dialysis and thank god I'm not doing it now.I have lived with this for 22 years and know what PKD can do to y ur lives.Keep :)

06/09/98 15:18:46

Name: SYLee	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: 98%	What's your age/gender?: 40/male	Are you on Dialysis/what kind?: no
What do you live? List state, area or country: Penang,Malaysia	Is it alright for others to e-mail you?: yes

Comments:
Thanks for your effort in helping those with this disease PKD.

06/08/98 19:59:49

Name: Cathi Madrigal	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Husband does/not sure	What's your age/gender?: Husband is 40/im 42	What do you live? List state, area or country: CA, Central Coast
Is it alright for others to e-mail you?: Yes

Comments:
Would like to know more about the best ways to keep kidneys functioning. Blood pressure down without damaging kidneys more.

06/05/98 14:35:05

Name: Debra McClough	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes-75%-not sure	What's your age/gender?: 47 - female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Florida	Is it alright for others to e-mail you?: yes

Comments:
I am constantly in pain day and night. My doctor doesn't seem to be able to find anything that can relieve it for any length of time other than strong prescription pain pills. My health insurance has gone from $125 per month to $562 per month because I use it so much. Consequently, I am working 4 jobs to make ends meet. My husband is already disabled with a circulation and blood clot problem so he can't help. Some days I don't even want to get out of bed, but I have to. I have been so depressed lately that when I know I need to call my doctor about problems, I don't because I feel I'm taking up his time needlessly since there really is nothing he can do other than put me in the hospital and give me antibiotics. I've known about this for 7 years. Over the years I feel that my husband is growing tired of hearing about my aches and pains with this disease. He either changes the subject or walks away from me when I want to talk about what is happening right then. He has even gone so far as to say that I'm faking it to just get attention. Well I guess I've taken up enough valuable time with my complaining, but it sure would be nice to have someone around that understood what this is like.

06/04/98 15:08:34

Name: Jeff Graves	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes/finding out now	What's your age/gender?: 47/M	Are you on Dialysis/what kind?: not yet
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:
my creatinine is 2.8 and getting worried.Want to know what my chances are for a transplant without going on dialysis.Doctor says I have 2-5 years.

06/04/98 15:06:22

Name: Jeff Graves	My URL: Visit Me
My Email: Email Me	Do you have PKD? Approximately how much kidney function do you have?: Yes/finding out now
What's your age/gender?: 47/M	Are you on Dialysis/what kind?: not yet

Comments:

06/04/98 04:02:50

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

Comments:
I WOULD LIKE TO HEAR FROM PEOPLE WHO HAVE THE SAME PROBLEMS I HAVE, HYPERTENSION,WEIGHT PROBLEMS. I HAVE 3 CHILDREN WHO HAVE NOT BEEN TESTED AS OF YET.

06/03/98 18:58:31

Name: Rebecca Gilliam	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Husband does. 15%	What's your age/gender?: 35/m	Are you on Dialysis/what kind?: no , But have a fistula for Dialysis.
Do you have a kidney transplant?: On the list	What do you live? List state, area or country: Texas	Is it alright for others to e-mail you?: yes

Comments:
I am looking for imformation on Financing a Transplant. I am not sure what all this will involve. My husband is not going to be able to go back to his job. Any info in this area would be greatly appreciated...

05/31/98 22:56:32

Name: Barbara	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes - 5%	What's your age/gender?: F - 52	Are you on Dialysis/what kind?: Peritoneal at home
Do you have a kidney transplant?: no	What do you live? List state, area or country: British Columbia	Is it alright for others to e-mail you?: Yes

Comments:
Interested in systems for organ donation in other jurisdictions. In B.C. the physicians must have the authorization from the family, regardless if the deceased has registered as a donor.

05/31/98 17:25:19

Name: Becky	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes , not sure re function	Are you on Dialysis/what kind?: no	Do you have a kidney transplant?: no
What do you live? List state, area or country: virginia	Is it alright for others to e-mail you?: yes

Comments:
Would like to speak to others with polycystic kidney and liver disease. Thanks!

05/31/98 03:31:31

Name: JL	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: my husband - 80-90%	What's your age/gender?: male, 31	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Ontario, Canada	Is it alright for others to e-mail you?: yes

Comments:
Anyone heard of new research on a PKD/fungal infection connection. I heard it might be the "second hit" that triggers cyst formation.

05/29/98 20:13:29

Name: sandy	My Email: Email Me	Do you have PKD? Approximately how much kidney function do you have?: yes; <10%
What's your age/gender?: female/52	Are you on Dialysis/what kind?: was on ccpd & capd	Do you have a kidney transplant?: yes, about 18mos ago
What do you live? List state, area or country: St. Louis, MO, USA	Is it alright for others to e-mail you?: yes

Comments:
If you can be wait listed for a transplant - don't hesitate. Do it NOW! You won't believe the difference it will make in your life. With all the new discoveries being made, the medication side-effects are minor compared to the ability to functionn norm lly.

05/27/98 13:20:11

Name: Lyra	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?: 26 female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Florida	Is it alright for others to e-mail you?: yes

Comments:

05/26/98 23:58:10

Name: L Sommer	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: Yes/None	Are you on Dialysis/what kind?: Yes/Hemodialysis	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 am interested in long-term dialysis patients - those on dialysis over 18 years. Please e-mail me if you would care to share your experiences with long-term dialysis. I can also be reached at [email protected]

05/26/98 03:59:30

Name: joyce	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: grand daughter has	What's your age/gender?: 13	What do you live? List state, area or country: Georgia
Is it alright for others to e-mail you?: yes

Comments:
I will inform my son and daughter-in-law about the message board. They will most likely want to communicate with other with PKD. I want to learn as much as I can . My husband and I are Licensed Practical Nurses and would like to communicate with profes ionals who have cared for PKD patients as well as those who have PKD and their families

05/22/98 13:40:17

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

Comments:
I had my transplant 11 years ago, Praise God! The problems I have stem mostly from the side effects of the drugs, which lead to brittle bones, arthritis, deep vein thrombosis, viral attacks, and of course a general lack of funds, since these drugs are ve y expensive. Our government pays for dialysis, and one year of transplant drugs. I've been on my own for 10 years with this, financially. I have now been diagnosed with prostate cancer, and the usual treatments cannot be administered, due to the transp ant. But, it beats the 8 hours every MWF on dialysis. <>< Conrad

05/22/98 03:25:03

Name: Chiree	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?: 29/F	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Australia	Is it alright for others to e-mail you?: yes

Comments:
Hi i am 29 and am looking for any help on diets or recipes for PKD and any help on how to follow one .Any information would be helpfull. Thanks for your help!!

05/21/98 16:42:05

Name: Jon	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: girlfriend has PKD	What's your age/gender?: 19/m	What do you live? List state, area or country: MI
Is it alright for others to e-mail you?: yes

Comments:
This page has helped me alot with my girfriend. She has had PKD since at least 5th grade, and she is graduating this year. So, thank you everybody for helping me and giving me advice. Keep up the good work!

05/20/98 17:59:10

Name: Kim Walters	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes. 30%	What's your age/gender?: 32. female	Are you on Dialysis/what kind?: recently found out so not yet.
Do you have a kidney transplant?: no.	What do you live? List state, area or country: Mansfield, Ohio U.S.A.	Is it alright for others to e-mail you?: yes.

Comments:
I am 32 yr. old and have recently found out that I have PKD. I was pregnant when I found out and have since had a stillborn little boy. am looking for others to talk to who know about PKD. have been doing some research, but don't know a whole lot. thanks.

05/17/98 19:06:46

Name: Lies Hoekstra	My URL: Visit Me	My Email: Email Me
Do you have PKD? Approximately how much kidney function do you have?: yes 13%	What's your age/gender?: 61 female	Are you on Dialysis/what kind?: not yet, will be soon capd
Do you have a kidney transplant?: no	What do you live? List state, area or country: netherlands	Is it alright for others to e-mail you?: yes

Comments:
any (cheerfull!) information on capd? my katheter will be implanted sometime in july.

05/16/98 03:18:01

Name: kristy	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?: 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: Louisiana, USA	Is it alright for others to e-mail you?: yes

Comments:

05/13/98 11:19:32

Name: beth	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?: 32 / female	Are you on Dialysis/what kind?: no
Do you have a kidney transplant?: no	What do you live? List state, area or country: Indiana, US	Is it alright for others to e-mail you?: yes

Comments:

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