there are no "carriers" for PKD, if you don't have it your children won't either and you should be able to donate a kidney.

Polykid,
I understand your father is worried about both his children, but if your sister doesn't have any signs or symptoms of PKD, she doesn't have the disease. And with autosomal dominant PKD, if you have the gene, you have the disease, period. There are no carriers, only patients. And rest assured, the transplant team will do a thorough evaluation of your sister to ensure she does not have PKD (CT, MRI, and depending on her age and transplant center, possibly even genetic testing depending on her age) to ensure she is healthy and free from the disease). I know a couple of 20-somethings who have had to go through the genetic testing process even though the sibling or parent they were donating to were symptomatic and had plenty of cysts in their 20s as well and they were obviously cyst free.

The only type of PKD that has carriers is autosomal recessive PKD and even if for some rare reason your sister was a carrier of the recessive gene (there are no documented cases of families with the dominant and recessive form of PKD), it wouldn't affect you (or her as she is not affected by the disease and never will be and thus would be a healty candidate for organ donation).

Your father means well, but his concerns about your sister being a carrier are a bit misplaced.

Here are a couple of more technical papers that discuss the genetics of PKD; the first explains PKD and genetics in more detail (and using terms of chromosomes, alleles and variants) just what I told you above. The second is a link to all sorts of PKD genetic information, some of it in excrutiating detail. Print it off the first one and show it to your father; it may help him understand that your sister is just fine and there are no carriers of autosomal dominant PKD--you either have the disease or you don't.

http://www.ncbi.nlm.nih.gov/books/NBK1246/

http://www.ncbi.nlm.nih.gov/sites/ga?disorder=Polycystic%20Kidney%20Disease

If you sister is over 18 and wants to donate, it's her decision (along with the transplant team) and I hope your father and the rest of your family are fully supportive of both of you.

Best wishes,
Ruth

PS How are you doing?

Thanks guys, for the information. Yeah I kinda of had doubts about "carriers" when my dad something about before. But I wanted to be sure. And to ihavepkd I am doing okay thanks for asking I hope you are okay too.

You seem very young to be needing a transplant. How old is your sister?

Ruth is right there are no carriers, but there are people in whom the cysts develop later in life, and so the possibility of PKD does need to be excluded before your sister can be considered a donor. Perhaps this is what your Dad was referring to and he got a little confused?

A diagnosis of 'PKD negative' in a person with a first degree relative with confirmed PKD is the absence of cysts at age 29 ( at least this is what is used in NZ - may be different in the US). So this can complicate the search for a donor and explains why genetic testing is often sought. to check PKD status in related donors.

I have a brother who has PKD but only has a few cysts at age 33. When he was examined in his late teens he had only one cyst and they couldn't be sure if it was PKD or a simple cyst.

I was riddled with them at a young age. It is such a variable disease even within the same family.

I wish you all the best in your search for a donor and I hope that indeed your sister is PKD free and able to help you out.

When my brother was going to get tested he was 37. The center said they rely on genetic testing for anyone under 35, but over 35 they are certain that an ultrasound and CT scan will do the trick.

BTW, pukeko, Polykid is young but unfortunately he is already experiencing a decline in function and other symptoms of CKD. I hope you are doing okay Polykid...it's good to see you here again.

I am doing ok Alinds, thanks for asking. Also I am on dialysis now and I am 27 years old so thats why I have been looking into transplant. My two sisters I have three (but she has a different dad and I inherited the disease from my dad) my two sisters are 32, and 24 and my half sister is 21 they all have offered to donate but I think the best thing is to have them checked out by doctors to see what they say. Thanks for the advice and support guys.

Hate to bring this up but if your sibling is tested and they test positive for PKD, they will forever be labeled PKD which will cause problems getting life insurance and can be a pre-existing condition with medical insurance. Anyway, something to think about.

I'm not saying that they shouldn't be tested, they just need to be aware of this possibility.