Hello Vicki and welcome to our pkd family. I am glad to hear that you just kept pushing!  It does pay off your right on that one.

How is your husband doing? 

I look forward to talking with you soon.

 

Bridget* 

hi Vicki and welcome to a great support group. I am sorry your daughter (and husband) are diagnosed with PKD, especially that your daughter found out so young. that stinks but with the right attitude she should just live a good, healthy life and try to get into Tolvaptan (or other program to slow the disease) and she may never run into problems.

we are a caring group and will answer whatever questions we are qualified to answer. we can't give medical advice but whatever stage of PKD, there should be someone here who is there or was there and can help.

It is great that your daughter is getting good care and most importantly good blood pressure control. Even for those of you who have children who have not been tested but may be at risk of inheriting PKD, regular checks of blood pressure are important so that it can be controlled if and when it does rise.

Liz

Hi Bridget,

Thanks for the message.  My husband (actually my ex husband now) is doing good.  He had his transplant 10 years ago.  He is on a myriad of pills though and his insurance doesn't cover most of them.  He developed diabetes and a host of other things.  He has had a wealth of information to pass on to our daughter.  He felt guilty at first but I think he has gotten over that.  Anyway, have a great day.

Vicki

Hi Vicki,

My 17 year old son was just diagnosed a couple of months ago.  He was also having blood pressure issues and since I have PKD, we had him checked immediately.  He has many cysts on both kidneys but still has normal kidney function.  My neph is also seeing my son and has referred him to the Mayo Clinic for a consultation.  He wants to get their opinion on possibly starting him on the tolvaptan.  I'll be glad to forward any information they give my son to you for your daughter.  My son has done well on the BP meds and so far has had no other PKD issues.  I agree with you, persistance does pay off when dealing with the medical profession.  Keep us posted.

Shelly

Thanks Shelley,  I would love it if you could pass on any info that you get from the mayo clinic.  Drop me a line after you go and we can go from there.  I have spent many hours on the internet and talking to nurses to find out as much as I can about this disease and how I can help my daughter.

Vicki

Vicki,

A couple of things my neph has passed on to me over the years, and I have encouraged my son to do as well, is limit caffeine, salt and no smoking.  I don't know if there is any hard medical evidence on caffeine encouraging cyst growth, but I have read that it has been speculated that it might.  That was good enough for me.  I was diagnosed at 21 and am 47 now.  My main effect of the PKD has been BP.  I have been incredibly lucky with respect to the pain that comes for so many people with PKD.  I have very little pain, just some discomfort from my large kidneys.  I went on to have my son after my diagnosis with no problems during or after pregnancy.  I had hoped that my son would not develop the disease, but did.  I feel like there are so many advances being made in treatment, that his prognosis will far exceed mine.  How is she dealing with the diagnosis?  My son done very well, but partly, I think because he has seen me living my life with the disease.  I'll be happy to pass along any info we receive at Mayo. 

Shelly 

Vicki,

Welcome!  There is at least one study that is following children diagnosed with the dominant form of PKD.  I know your 17-year old will be adament she is not a child......  Go to www.clinicaltrials.gov and search for PKD children.  One of the studies is at the University of Colorado Health Sciences Center in Denver.  I don't think there's any restriction on who can participate in terms of nationality, so you could come down from Ontario (and they might even pay your way). 

 

For other contact information, check the PKD Foundation website at www.pkdcure.org.  They have a listing of PKD clinics that will provide you contact information for Mayo and other locations.  In addition, there is a Canadian chapter of the foundation (at least a walk for PKD) and one of the coordinators is in Ontario (I don't recall which city).  Check out the "connect locally" link on the foundation web page and look under "international". 

 

Best wishes,

Ruth

Hi Vicki,

 

Welcome to you and your family. This is one great group of people.

 

I also have a daughter who is now 19 who was diagnosed with PKD at 8 months. The only meds she is on is for blood pressure and she has been on that for a few years. I wish you and your daughter a wonderfully happy, healthy life.

 

Sally

Hi Vickie, Glad to see you here.I'm happy that Holly is finally seeing a neph. It will be 10 years on June 3 since David's transplant. Hope her bp stays under control. Josh was also diagnosed at 17. He is also on bp meds. But being young thinks he has nothing to worry about. Now that he's up there he hasn't had any blood work or anything in 2 years. Anyway way chat at you later. Marilee

Vicki,

My son, who is 17,  and I just got back from the Mayo Clinic in Jacksonville, Florida.  We saw Dr. Fitzpatrick, and after reviewing all his information from his local nephrologist, basically told us what we already knew.  Since my son's blood pressure was up, he discussed decreasing salt intake, including what to look for on food packaging concerning sodium.  He suggested decrease in caffiene, especially sodas, with high salt contents.  He discussed the importance of exercise, especially cardio, to keep the heart healthy.  He talked about the tolvaptan study, not an option until he has his 18th birthday, but he did recommend it.  He said he felt that it would be available in a couple of years for heart related problems and that it could be written for PKD patients off label at that time.  He does have patients on the study and he said they were doing well.   Since he has two stones in the kidney, the doctor encouraged him to drink as much water as he could to keep the urine dilute, discouraging stone formation.  He said he felt Alex was doing well, controlling his blood pressure and exercise.  I guess we will just wait until his 18th and decide at that time to enroll or not in the tolvaptan trial.  At least it confirmed that we were going in the right direction.  Hope this information is useful.

 

Shelly