Polycystic Kidney Disease (PKD) Support Group

Hi Pots,
I know how overwhelmed you must feel. My now 18 year old daughter was diagnosed with PKD a year and a half ago. I had never even heard of PKD before then. A few months later my husband was diagnosed also. He is 49. How is your kidney function? Does anyone else in your family have PKD? Feel free to email me if you want to talk more. My email is:
mloren01@gmail.com
Try not to be scared. There are medications currently in clinical trials that may soon be approved to help stop the progress of this disease.

Hi Pots,

I had a myomectomy and other uterine operations to control the fibroids. All those operation ended giving me endometriosis, adenomysin, and best of all adhesions!! I ended up 3 years ago begging for a radical hysterectomy due to the pain and all the throwing up I was doing during my time of the month.

I also have PKD, too. It's been in my family for generations. The medical knowledge for PKD has improved by leaps and bounds over the years. I will let you know just by how much by letting you know about my mother. When I was 4 years old (1963) they cut her abdomonial area open so they could look at her kidneys in order to make a determination that she had PDK. They did that operation on her even though my great grand mother and grandmother both had died of PKD!! I've had some unpleasant expereinces in the 1970's trying to convince doctors that this runs in my family and I have some symptoms.

Times have changed and its so much easier to determine if you have PKD. I am looking so forward to the new medicine (Tolvaptan) which is being tested to treat this disease. I now feeling less apprehensive about aging and dealing with this disease as I age. There is so much research being done and I know that they will get this disease under control.

Hang in there and take care.

Andrea.

Hi pots ,I have found the doctors dont like to warn us ,even thought they must see it coming they wil tell you your fine till your not ... it is a shock ,it can be such a scary disease .but most people do not get it too bad ,a lot of people do not ever get to end stage ,so it depends on the next few years seeing how fast you progress ,hopfully not much at all..

Hugs, Pots. I am right there with you... just diagnosed a few days ago and I am really in the dumps. I'm reaching out to this board in hopes that it can keep my spirits up because right now I am just a wreck. I am so afraid. I want to know what I can do, what I should eat, anything to help slow the progression... Just wanted you to know that you are not alone in your feelings. hugs, dawn

I was diagnosed at 17. I am now 47. Andrea is right PKD awareness has come a long way. My grandmother was opened to see what was happening, just to be closed immediately because there was nothing they could do. I had 2 great aunts which never had a problem and died of old age. My mother lived until she was 67years old after a long battle which she survived just fine. I have had both kidneys removed (13 1/2lbs each), had brain surgery due to high blood pressure, went on hemo dialysis in a center, 1 1/2 years later went on home hemo dialysis, which I recommend if possible, and just in August had a kidney transplant. I feel better than I have in years! Just take one day at a time. Deal with what comes the best you can. You can survive this disease. With all the new research , I am optamistic that my children may not ever have to face PKD. Try to stay positive! It really helps!

Hi Pots,
I'm so sorry to hear about all that you have been going through. It sounds very overwhelming. The best advice would be for you to find a good Nephrologist who can assess your kidney function and treat any pkd complications. I understand your fear. I was diagnosed 15 yrs ago. I'm here if you someone to talk to.

Carm

Hi Pots. I also have PKD. I was diagnosed in 2001 at the age of 21. I'm now 29. It's very tough that you are having all of this at once, one or the other would surely have been enough let alone two things at once. However my own experience of PKD is that it has barely affected me and it definately hasn't affected or changed my life on a day-to-day basis. I'm not a big fan of blood either, and I hate needles, but apart from blood tests once a year to check my kidney function, there is no need for me to come into contact with either :-)
Do you know what your kidney function is?
You will find lots of supportive people on this board. My email address is katefaver@live.com if you want to chat in private. Feel free to email me with any questions or concerns or just to vent! Kate x