Should I tell the kids now?

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jmbforest
Posts: 3
Joined: Thu Sep 03, 2015 8:08 am

Should I tell the kids now?

Post by jmbforest »

I can't decide whether to tell my children they are at risk from PKD. I'm a 53 year old male and I was diagnosed 4 years ago (no family history). I seem to have a mild form of the diseases (the consultant says probably type 2) - I have many cysts on each kidney.

I have told my eldest daughter (24) that I have a 'kidney condition' (I have not used the word 'PKD') but I've not said more. My view is that, given that I seem to have the milder PKD2 type, I don't want to tell her at this stage - I don't think I would have wanted to know at 24. I'm worried it will impact on her well-being (I worry about my PKD) and I'm concerned that her long-term boyfriend might be scared off. Then there are all the problems with insurance, mortgages, etc.

She does complain that she has 'irritable bowel syndrome' occasionally but her blood pressure and health seem OK otherwise. Should I say more or am I right to want to wait until she's older or develops obvious symptoms?
AmandaClare
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Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Should I tell the kids now?

Post by AmandaClare »

If there are advantages to early diagnosis and treatment, I think you're obliged to tell all your children to get checked out now. (I don't know much about PKD so don't know whether that's the case. For my condition, Alports, the progress of the disease can now be delayed by years or decades through early drug treatment.)

If not, it's trickier. Bear in mind though that your daughter should probably know before she gets pregnant - since that puts a lot of strain on the kidneys - and pregnancies don't always happen to plan.

Personally I'd want to know. But I've lived with a serious condition and the uncertainty that goes with it since childhood so my perspective might be skewed.

Best of luck
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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bigbuzzard
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Re: Should I tell the kids now?

Post by bigbuzzard »

That's a tricky one. My very quick answer would be 'probably not yet', though there's loads of other stuff to add to that (some of which you might find by searching for relevant words in this forum).

I'm 47, my mum was diagnosed in 1978, then on dialysis and transplanted in 1993, which was around the time that I discovered I was PKD-positive. I was told then, in my early 20s (wrongly, I now know) not to worry about it as it wouldn't affect me, if at all, until my 40s/50s. I should have been much more active in controlling high blood pressure. However, I did essentially forget about it, which meant that I 'crash-landed' with 6% function at the age of 38. In the years before this, I'd travelled the world in blissful ignorance of my deteriorating kidney function, so in retrospect, I sometimes feel glad that I wasn't under the eye of a renal department, as that travel may not have happened (or been much more difficult), which would be a huge regret. So, it's complicated. Since then, I've been on dialysis, and had two transplants, both from living donors, and while that may seem like a traumatic way to have spent the last 9 years, they've genuinely been the best of my life, and it looks like continuing that way! Does any of that help at all? Perhaps not. I now have a five-year-old daughter, so the issue of 'when should we tell her' about how she has a 50% chance of inheriting dad's kidney condition is already on my mind. Hopefully, it'll be before she discovers this post on the web and presents me with it!
Dibs
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Joined: Fri Jan 23, 2015 1:29 pm
Location: Somerset

Re: Should I tell the kids now?

Post by Dibs »

I was in my early teens when my dad and his peers started to have problems. I knew that there was a good chance that I would have similar issues and was told to get myself checked when I was in my late twenties. It didn't make any difference to any life choices until recently. I'm in my fifties now which is older than any of my dad's generation made.

My children are teenagers, are aware that I have PKD and they might. My consultant says that there is no need for them to get themselves checked, but just to monitor their blood pressure as they get older. The only real control over the condition is to keep blood pressure regulated. So I would say yes, tell them. I expect that they know that many conditions are inherited, and so they might be wondering anyway.
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Should I tell the kids now?

Post by SKM23435 »

Always a good question. It set me thinking about my own experiences and have I told my children.

I don't have PKD but have a nephropathy that appears in our 50's . I saw my dad, aunt, uncle and grandmother with it. With the help of A'level biology I worked out I had a 50% chance of inheriting it. However I'm so like my dad I think I always knew I was going to get it. No one ever sat me down and said these are the facts. I think I just observed and soaked up the conversation around me. On the 2 occasions I asked nephrologists in my 30's and 40's I was just told not to worry, keep my blood pressure under control, have my urine tested (waste of time it's always been "normal" even when I was on dialysis) and annual blood test if I was worried. It didn't bother me knowing I had this possibility hanging over me. In latter years as we watched my renal function deteriate on blood tests we did a lot of foreign holidays knowing that these would come to an end with dialysis.

Thinking of my own children aged 22 and 24 I guess they have seen what has happened to me. Failure/ dialysis/ transplant. I've mentioned that they have a 50:50 chance of the same thing. We've not sat and discussed it in depth. I'd be happy to if they wanted to. I'd just love them to live a full life before being slowed up by kidney disease but I don't want them to spend the next 20 years worrying about something that may not happen.

I hope that my children look at me and see someone (who admittedly has been extremely lucky) who is living positively with kidney failure. With my new kidney I think I'm a very good advert.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
wagolynn
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Joined: Thu May 23, 2013 2:49 pm

Re: Should I tell the kids now?

Post by wagolynn »

I think you should tell her now.

I would talk to your GP or consultant asking about what tests she can have, (an ultrasound scan would be simple and would tell her if it is showing up now, a genetic test could tell her if she is a carrier) so that when you tell her you have some options for her. As mentioned above, she is likely to have problems if she becomes pregnant, and she certainly will not be pleased you didn't tell her...

As to mortgage, insurance, and boy friend,
Mortgage - a mortgage that cannot be paid back becomes a millstone, I would not wish that on anyone.
Insurance - if it is hereditary, and her dad has it, and knows he has, then I think the Insurance would be invalid.
Boy friend - best he walks now, if is going to, rather than later when the situation has get more complicated.

Best wishes.
suz
Posts: 57
Joined: Fri Apr 10, 2009 7:33 am
Location: Australia

Re: Should I tell the kids now?

Post by suz »

I was diagnosed with PKD in my early 30's and had I been diagnosed earlier I was told that my two pregnancies and border line blood pressure would have been monitored more closely and probably treated differently. I would also have been able to avoid prescription drugs that can affect the kidneys. I have no family history of PKD and neither of my daughters have it, they were both tested in their early 20's. Once I was diagnosed it was never hidden from my girls and spoken of openly. They were both aware that it could be hereditary but it wasn't something they worried too much about.

On the subject of Insurance it was never a problem for me until I started dialysis when I was in my mid 50's and then no problems with general insurance only life and travel. I had health insurance prior to dialysis and this has not been affected by my condition either before or after dialysis and transplant.

Regards Suz
jmbforest
Posts: 3
Joined: Thu Sep 03, 2015 8:08 am

Re: Should I tell the kids now?

Post by jmbforest »

Thank you to everybody for your comments. As ever - these matters are not black and white. What is clear is that I should make sure the kids have their blood pressure checked and that, if and when they get pregnant, I should make sure they have themselves followed closely by their GP (and themselves). The rest seem a grey area but given that I'm well I'm tempted not to frighten them too much whilst they are still in their teens and early twenties. If they develop symptoms then that's another matter.
wagolynn
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Joined: Thu May 23, 2013 2:49 pm

Re: Should I tell the kids now?

Post by wagolynn »

Hi jmbforest,

I am afraid waiting until she is pregnant is 'bolting the stable door after the horse has gone'. She would be justified in being very upset that she was kept in the dark.
rheaybou
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Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Should I tell the kids now?

Post by rheaybou »

I too have a genetic condition - Alports.

My advice is that being aware of a potential issue is better than being told once symptoms arrise. Once my daughter is old enough to understand (she is just turning one) I will talk to her about it, this way she will understand why she has checkups at the Dr's and her dad is taking lots of medication for a transplant etc. Htere is a possibility that she will be prescribed a BP medication that has been shown to slow the effects of Alports.

As the condition is genetic she can also investigate the potential issues she may have if in the future she wants to start a family, how the defect is passed and what she can do etc.

Long term prevention/protection is much better than learning about renal issues later in life. I will tell my daughter, my advice would be that you should do the same with your kids.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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