Polycystic siblings and Child with kidney stones...

[IrishGirl]

I dont know where to ask this question but here it is. Our family has just been diagnosed as
Polycystic, my dad died at age 38 of this and now my sister and brother have it. I may or may not have it and have not been tested yet. This is my question: My 10 year old boy has just developed kidney stones. Not just once, but twice in the last 6 months. Does anyone know if this is due to our family's history ? Is it an indication I have the disease? I am wondering if I am safe to donate if I dont have it....woudl like to donate to my sister or brother but will my child need a kidney in the future? How do you people make these decisions? I am astounded by the  number of people on the site and the amount of the knowledge, and feel as if maybe someone has a clue? Thanks. IrishGirl

[devon]

Welcome to the site! (I'm fairly new here myself) 

I don't have any answers but I'm also curious about what the more knowledgeable people here will have to say to answer your questions.  I'm very sorry you have to go through all this. 

My understanding of PKD is that it is hereditary and so you and your children are probably going to have problems.  The fact that you child's had kidney stones twice in 6 months is an indicator that something is not right. 

Besides asking here, I would suggest finding a good nephrologist as quickly as possible.  There may be lots of nephrologists but finding a "good one" is the trick.  Ask nurses or other docs for a start.  When you get a name, google that doc and see what you can find out about him/her.  Look for Board Certified docs!  That process usually separates the wheat from the chaff. 

What do you call person who graduated last in their medical school class?  Answer: Doctor.  So the fact that they have an MD doesn't always mean much more than that. 

Good luck!

-Devon

[stauffenberg]

A higher rate of incidence of kidney stones has been noted in patients with renal polycystic disease.  The renal anatomical and metabolic abnormalities associated with renal polycystic disease are thought to account for the higher rate of kidney stones.  As a result, it would be reasonable to suspect that the presence of kidney stones in a person from a family with renal polycystic disease is more likely to be on the way to developing overt renal polycystic disease, and so may some day need a kidney transplant from a non-affected relative.

[KT0930]

IrishGirl, I don't know anything about PKD that I have not learned on this site, so I will leave that for the more informed among us.

I do know a bit about transplants from living donors, though (I've had two), and can share about that. If there is ANY reason to eliminate someone as a living donor, it is the transplant team's job to find it. High blood pressure, which can either lead to or be an indication of kidney disease, depending on who you talk to, is usually the first thing that will disqualify someone as a donor. Diabetes or a strong family history of diabetes is another. Unfortunately, a family history of PKD (especially a strong one like your's), even if the individual does not have it, will also eliminate someone as a donor. The process of testing potential donors is to screen for potential problems in the donor which could cause problems if the donor was to end up with kidney problems later.

Even if you were unable to donate to your son (IF he ever needs it, praying for the opposite!), what about his father or an aunt or uncle from his father's side? Also, more and more non-related living donor transplants are being done - teachers, coaches, ministers, friends and spouses are just a few of those who donate. So don't give up, ok? 

[twirl]

hey, I can help you some.
my mother's father died from PKD when he was around 45
my mother had a transplant when she was 69 and she died
she had PDK but it did not bother her until she was older, went on dialysis about a year before she died
but she also had cancer
I have PKD, my twin does not and she could give me a kidney but she will not ( too worried about herself) but my neph was thrilled to learn I have a twin, oh well
my older sister does not have it but something is wrong, she has only one working kidney but it is not PKD
my two daughters have PDK--- we have seen it on ultra sounds
my son, we do not know, he has a 50/50 chance
so all my children could pass it on
it is a horrible disease and I feel for you and yours