Comments:

Comments:
Ihave experienced a lot of complication since I learnt I had PKD. Is PKD curable? If not, what is the remedy?

Comments:
I not only have PKD but cyst all over my body,I had a liver transplant in 1994,they cyst are now covering my kidneys and rupsure all the time,the pain is bad that I have to go to bed for days or sometime to the hospital..My mother died with the same disea e all over her body.

Comments:
I WOULD LIKE TO HAVE SUPPORT TO HELP ME WITH MY DAILY LIFE HOW TO DEAL WITH PKD AND PAIN ON A EVERYDAY BASES. DO PEOPLE GET DEPRESSED AND SAD? I CAN NOT SEEM TO BE MYSELF ANYMORE

Comments:
I have been aware of my PKD for ten years (since age25) and have little problem other than regular control of blood pressure and some regular pain in the area of my ribs and middle back when lying down. My Mom died of a brain aneurysm at age 42. WHAT I AM INTERESTED TO LEARN FROM OTHERS IS WHETHER, YOU EXPERIENCE PERIODS OF GREAT ENERGY LOSS OR FATIGUE. Please email with any details and steps to take to overcome such symptoms. My email is [email protected]. Thanks to all who have read this and those who take the time to respond.

Comments:
I feel lost with the disease that is not widely talked about here in Poland...

Comments:
Our baby died during bith, although he was given a 100% mortality rate outside the womb because he had PKD. My husband nor I knew anyone with this disease, and had no idea that we were carriers. We are to have ultrasounds of our kidneys soon on the slim c ance that one of us have PKD and don't know it. This was our first child and would like to try again. We just want to find out more about the disease; infantile, adult and child.

Comments:

Comments:
My step father had PKD and died when he was 58, two years ago. My (half) sister was diagnosed around that same time and had to get one of her kidneys removed. She has been trying to control her diet with no salt/low protein meals which is her greatest ch llenge now. There are a few websites available for special diets, it just takes some research. Good luck.

Comments:
MY FATHER HAD THIS DISEASE AND DIED AT 56. HE LOST OTHER FAMILY MEMBERS AT AROUND THE SAME AGE. I AM STARTING TO FEEL MORE DISCONFORTS THEN IN THE PAST, SUCH AS SHARP PAINS IN BOTH MY BACK AND STOMACH AREA. I WOULD LILE TO HEAR FROM OTHERS ABOUT LOSIN PERCENT OF FUNCTION AS FAR AS TIME GOES.

Comments:
I was diagnosed at 20 and now at nearly 30 I've still got good function in both kidneys, although they're both covered in cysts. I've had a CT scan for aneurisms (due to headaches, dizziness, etc.) 2-3 times in the past 10 years and so far so good. My la est "adventure" with this disease ended with me in the hospital with kidney stones a couple weeks ago. Still fighting to keep my BP down ... and trying to avoid meat and caffeine. I've found it's been helpful talking with other people who have PKD.

Comments:
sometimes it is very hard for me to accept the fact of this disease and how it is going to affect my life. I'm alone with this disease, because my mother won't get checked, and no one else in the family has any simptoms. So I just try to live each day, nd not remind myself of this disease.

Comments:
I would like to find out more information on PKD, any suggestions?

Comments:
I found out four years ago that I had Polycistic Kidneys, Both my Mother and my Mothers Sister have had kidney transplants. They were both under the care of Dr Mike Buick in England

Comments:

Comments:
I just found out that I have this disease today (9-4-99), so I don't know a whole lot about it.

Comments:
I'm looking for information and support. First hand information is better than reading dry books.

Comments:

Comments:
Transplant patients need to do some heavy lobbying for Congress to approve Medicare's payment of immunosuppressive drugs for more than three years, or else what's the use of advertising how wonderful organ donation is, etc. No one of moderate income can ay for these drugs -- they are very expensive. It is a shame that the surgery costs so much, and then after three years Medicare quits helping you get the drugs, and you go back on dialysis, which costs a lot more, is more dangerous, and which Medicare w ll pay for!! We need for Medicare to continue to pay for the immunusuppressive drugs so the wonderful transplant work will not be for nothing. My drugs would cost approximately $800 a month if I did not work and my health plan did not pay for them. Howe er, I am nearing retirement age and I could not pay this much per month and have money to buy groceries, etc. My father died of polycystic kidney disease which is genetic. We all need to write our senators and congressmen.

Comments:

Comments:
My husband lost his mother to a brain aneurism several years ago. She had suffered from PKD for a number of years, and the family was informed that her death, though not directly related to PKD, was probably brought on by her compromised condition. She as diagnosed at 40. My husband was diagnosed two months ago by a urologist and just had his first nephrology appointment. He's been told that his kidneys are obscured on the ultrasound because they are so covered in cysts and that the cysts have begun t spread to his liver. His doctor told him that he could only treat his PKD symptoms (of which he has none), not the disease itself. So, essentially, we are to wait and see what develops...

Comments:
i was recently diagnosed with pkd and to be truthful i'm scared as hell. the doctor hasn't told me what to expect just going back and forth every month trying to control blood pressure,no caffeine etc i'm wanting to know everything about this considering he fact that i'm the one that is going to die from it without a transplant thanks bunches,janet sons

Comments:

Comments:
I ALREADY SUSCRIBE TO A NEWSLETTER. I AM INTRESTED IN WHAT IS BEING DONE IN TERMS OF RESEARCH AND PREVENTION. I HAVE HEARD THAT DIET CAN DO A LOT IN TERMS OF SLOWING DOWN THE PROGRESS OF THE DISEASE. IS THAT TRUE? I WOULD APPRECIATE ANY INFORMATION YO HAVE ON THIS DISEASE. ALSO IN TERMS OF MY CHILDREN WHAT CAN THEY DO TO PROLONG KIDNEY FUNCTION, AND WHEN SHOULD THEY BE CHECKED?

Comments:
Mother is 70, has had transplant. I've been diagnosed since I was 19. I also have type II diabetes.

Comments:
15 year old daughter waiting for scan, she gets pain around the kidneys already. Husband has been on medication about a year for high blood pressure.

Comments:
my sister is on dialysis,she is 40 yrs old, we are waiting on a kidney,she lives i n TN, i would like any new info/i have several family members that have or have died from pkd/thanks

Comments:

Comments:
Actually, I am interested in hearing from anyone who has a child with ARPKD but welcome PKD information.

Comments:
I do not as yet have any significant signs of PKD, although ultra-sound did show some small cysts on my kidneys. I do come from a family with PKD in four+ generations. I have only just found this web site, and would be keen to recieve more information, an happy to help/ support where I can.