Not a Death Sentence!: I just wanted to... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Not a Death Sentence!

JDelve profile image

I just wanted to give you recently diagnosed PKDers some hope and assurance that this is not a Death Sentence! I have it, three of my four siblings have it, my Dad and his only sibling had it! In fact two of my three children were diagnosed with it at the 20 week pregnancy scan (now aged 13 and 11). So, I know what I'm talking about!! 😀😜

I am now 49 and ever since I had my PKD babies I have done tons of research. Now I'm not an expert, and the things I try are often trial and error. But I believe there are things you can do to help yourself and your kidneys. In fact if you're interested I started a blog:

I'm keeping record of my findings as I and my family attempt to live a PKD diet and lifestyle. As I said I'm not an expert, and who knows if it will ward off the dreaded kidney failure, but I'm hoping it will slow it down at least. Also I will be in a much stronger and healthier place for whatever the future has to hold.

Just remember though, 40% of PKDers don't ever need dialysis. Don't lose hope or despair, and if you want to be proactive do your research and try to be as physically strong and healthy as possible. Xx

12 Replies

Fantastic post

JDelve profile image
JDelve in reply to DeanSamson

Thank you xx

So impressed by your attitude to life. I will follow your instructions and have a look at your blog. Many many thanks for your encouragement.

JDelve profile image
JDelve in reply to Zhiwei

Thank you for your kind words and I hope you find the blog useful. Do your research though and do what feels right for you. Good luck xx

Did they look for cysts in your children's kidneys because of your diagnosis or was it found through general scanning?

my children are 10 and 5 but nephrologist said they won't scan them until they're in their late teens , i was only diagnosed myself in October, there's no family history and nothing was mentioned at the ultrasound scans

JDelve profile image
JDelve in reply to AD_may

Hi there! I wasn't diagnosed officially until about 8 years ago, so It was the general 20 week scan with my 11 and 13 year olds. My youngest's (who's now 7) kidneys were clear at the scan, so they won't scan him until he's much older or he shows any symptoms. If you do have it it doesn't mean your children will necessarily have it (50/50 chance). I hope you are dealing with your own diagnoses OK. It's always a shock to begin with. Xxx

Thank you for your post, since we found out we have been doing a lot of research. The biggest scare was what we initially found online, which was really scary, and all horror stories. With this site and talking with others we are feeling much better and taking the days as they come and just trying to learn as much as we can. Glad you and your family are all ding well, it great to hear stories like that is what gives us the most hope. The hardest thing I have now is hoping she starts eating better and exercising more, I think she does not want to believe it is a big deal and it kinda ignoring it. In a way I am glad I don't want it to consume her life being afraid but I want her to realize what she does not can impact her later on, hard to get through to her at her age. Thanks for the blog post, would love to follow it.

JDelve profile image
JDelve in reply to scaredmom

I understand completely but try not to worry too much. My daughter has decided to cut down on sugar and salt etc, even to be a veggie. My son, however, has no interest in anything remotely healthy. He would live on a diet of meat, pizza, fizzy pop, sweets, chocolate etc. Obviously he turns 11 in a couple of weeks, so I still have a fair amount of control, but I can't force him to decide to make healthy choices once outside the home. I have had to just accept that, although I remind him regularly he has to decide for himself. My brother, Lee, who has had a transplant a few years ago now, wasn't great with his diet, but he has faired so well since the transplant. So, please try not to worry, and don't nag her, because it will probably fall on deaf ears if she's in denial. Hopefully she'll face it at some point and make some healthy decisions.

We so want the best for our children, and it's such a shock that perhaps their lives may take a different path. But try not to worry, continue with the research and educate yourself and hopefully your daughter has many healthy years ahead of her. The outlook for PKD is still good. My brother is a testament to that! Xx

Hi JDelve,

I tried to get to your blog but the link doesn't seem to work. I have a baby who had echogenic kidneys during the 20 week ultrasound. He is almost 9 months old and has numerous cysts. We recently discovered that he has elevated blood pressure and the doctor prescribed blood pressure medication. He has been diagnosed with ADPKD. My husband has it. How are your children doing? Do you know of any other cases of ADPKD which manifested early?

Hi are you still running this page

Thanks for this post . It's just what my kids and I need to hear. We'll certainly be following your blog.

Thanks for sharing💚💚

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