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Kidneys

V

Vince01

Well-Known Member
Messages
54
Hi all,
This could be a long one, sorry.
I have a son who's mother has polycyclic kidneys, hers started to flare up 4 years after we met she was 20,all through her life it's been causing her pain, she has been on dialysis for the past 12 years,
My lad, who's 26 has not been tested for this as his mum doesn't want him to have it to worry about,me, I'd like him to know
I'm 64 T2 and as you all know we are tested for heart,liver,kidneys etc, everything with me I more than good, polycyclic can come on around mid 20s onwards
I know medical advice is not allowed her but is there a cut off point, age wise, to be able for a living kidney donation?and if He did test positive could I do that whilst I am still "heathy".
Has anyone heard of this or point me in the right direction
Many thanks to you all,take care, no sweets!!
 
Does your son know that this disease can be inherited? If so, he is able to decide for himself what to do with his health.
The problem with kidney donation is not in age, but in the fact that the donor's health is considered a priority, and if there is a risk to the life and health of the donor, no one will withdraw organs from him, and with diabetes, the your kidneys may fail one day, so they will try to preserve your health in all ways. In addition, even for the recipient, they try to keep his kidneys as long as possible, because the transplanted kidney will not work for the rest of his life. 30 years is the maximum how long it will last.
 
Zhnyaka said:
. 30 years is the maximum how long it will last
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There's a lady called Angela Dunn who had a kidney transplant in 1970, and is still living a healthy life with the same kidney. She's thought to be the longest surviving transplant patient in the world. Whilst this may be unusual, there's other people lived longer than 30 years, and of course many people where a transplant hasn't worked, or only for a few years. There are so many variables that you can only put an average 'expected' time.
 
Thanks to you all, there's no easy answer is there?, if a kidney transplant has a chance of giving him, however many ,extra years then I have to hope, but ,no, I have not asked my lad about ,his, decision,
He's still young and immortal, but your right, I need to find the right time and broach this with him
Ounce again many thanks.
 
I know this isn’t related to diabetes but thought I’d just give a little insite. My husband, his dad and grandad all died of prostate cancer (my husband was diagnosed aged 48!) but because he was very active and fit he didn't die until he was 61, although still young. Anyway of course this is an hereditary disease so my son was given the opportunity to have gene therapy. It took him a few years to come to terms with it as he didn’t want to know and preferred not to be told he had the defective gene. But now he has a wife and daughter, his attitude has changed.
Could your lad benefit from counselling as it’s sometimes better talking through his emotions and questions with a stranger? Apologies for the long post ;)
 
Thanks missmuffet,
So sorry about your loss I can't even try to imagine the pain you have been through.
You are right,our minds change as we get older so now might not be the time, I, to, don't wish my son to worry, maybe needlessly, at the moment,I wouldn't know how to start that conversation with him.
I think ,in a previous post there might not even be the possibility of me donating, as T2, if that is okay then move on to actually asking if he wants to know. So I will telephone my DN .
Many thanks.
 
Vince01 said:
Thanks missmuffet,
So sorry about your loss I can't even try to imagine the pain you have been through.
You are right,our minds change as we get older so now might not be the time, I, to, don't wish my son to worry, maybe needlessly, at the moment,I wouldn't know how to start that conversation with him.
I think ,in a previous post there might not even be the possibility of me donating, as T2, if that is okay then move on to actually asking if he wants to know. So I will telephone my DN .
Many thanks.
Click to expand...

As others have said, any decision for testing would be your son's, so out of your hands.

As I understand it (and I may be wrong), being a potentially inherited disorder, he may or may not develop the condition. I'm not entirely sure that knowing does anything to enrich his life, yours or his mother's. In fact, if he tested positive, it could lead to an addition psychological burden for his mother - irrespective of the rationality of that, bearing in mind it is completely outwith her control.

Even if your son tested positive what does it gain to know? It is possible that every ache or pain could be attributed (by him, or others) to the potential that his condition was developing. He would definitely be disadvantaged if he applied for life assurance, critical illness cover or income protection, as it would have to be declared for underwriting purposes.

If he eventually was diagnosed with the condition, like may there is no straight line rate for progression. Some will have a tougher time than others.

To be honest, his best bet for now would be to keep himself healthy, with a bit of an eye on his blood pressure. High blood pressure is one of the triggers for kidney disease, per se, not specifically polycystic kidney disease.

Sometimes knowing is good. Sometimes it really isn't good. Only he can decide, and I would urge you not to try to sway him, because if he tested positive, and found it a really mental burden, he could end up seeing it as your fault.

Not easy, but what are the wins in knowing?
 
And breathe,thank you,
Your words are truly words of wisdom
Mentioning his mental health and the that, would, probably cause especially him a lot of anguish, as his mother has gone through a lot and he has seen his mum deteriorated.
He is very fit and like most of the younger generation, doesn't drink, his work is quite physical and does gym work.
His mum had five sisters, only one,also had polycyclic kidneys, sadly left us now, so upon first posting, as his dad it's me that's doing the worrying, as parents do no matter how old your kids are, as said before by other posts, it's, completely, up to my lad.
I thank you all for your comments.

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