My dad died in 1986 as a stroke and a... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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My dad died in 1986 as a stroke and a post mortem revealed he had PKD. I was 17 at the time and had some follow up scans for a few years


Until I was in my late 20's then was told I didn't have PKD, so I didn't need to be seen again. IS this correct? I am now 44. I've read recently that symptoms usually start between 30-60. It's been playing on my mind that my dad had it, his siblings have died but nothing was said about them having it, I have 7 siblings and only I went for the scans, I worry about it, my children are Cystic Fibrosis carriers (on their dads side)

24 Replies

As far as I am aware pkd will show on scans by your twenties,. My children were all tested as teenagers and were three of them were given the all clear and one was diagonsed. If you were scanned in your twenties and were clear as far as I understand you will remain clear.

You could always ask for a re scan If you are really worried


adelebw in reply to slimta

Thank you. I remember the doc saying I had some pyramid shapes on my kidneys but didn't seen in-duly worried. After reading some of the posts and seeing how many people per family are affected, we've got a massive family and only my dad had it, and there are 8 of us kids so maybe we've just been very lucky

Hidden in reply to adelebw

70% of my mothers side are affected including my only brother and I. A genetic blood test will give a definate answer. Ive known this disease and its problems since 1976.

If you are really concerned you have two choices at this point. A simple blood test to check you creatinine and urea which will also give you your function. The other is also simple an altrascan (just like a baby scan). But as slimta has stated normally if you have nothing in your twenties you are not like to have it at a later point. Good luck with what ever you do.

Hidden in reply to nikityler

That will get you a snapshot. The first stae is diagnosis and the best way for this is a genetic blood test. This would tell you whether you will EVER get the disease and may if you can get a selection of samples from relatives enable prediction of whether you will pass it on to successive children.

If positive you then start the programme of blood testing and get referrals to kidney units for monitoring.

PKD pops up at any age. Scans take a snapshot and as cysts can be microscopic can give you a false clear result. Genetic counselling and testing is the only real and permanently trustworthy way forward. In my family my brother was diagnosed at 14 and an aunt at 60. Ive known about this disease since 1975 and seen and experienced many of the problems it causes

ladyt62 in reply to nikityler

I've just had my blood test this and my last blood test had creatine in it now i have to go bk in a month for more blood test i no creatine is a bad sign in getting really scared COs the waiting list for kidney and liver transplant is long waiting list

ladyt62 in reply to nikityler

Niktyler how r u I remember yr or so ago your kidney didn't have much function how r u now mine r almost done I've got creatine in blood having monthly test

nikityler in reply to ladyt62

Hi there, I am not to bad function dropped to 6% so have been on dialysis since January this year. How are you keeping

ladyt62 in reply to nikityler

How u feeling since u been on dialysis in getting scared the unknown u heard many things have u got me energy or r u weaker

nikityler in reply to ladyt62

Yes it is scary, not as bad as I thought though. And yes I have a little more energy but time will tell if it gets better or worse. I am experiencing some problems with my fistula arm, aching and pins and needles so will mention this at my next neph appointment which is the end of April.

ladyt62 in reply to nikityler

I hope all goes well for you it nice to beable to no by someone who going through what im going through and the same treatment as myself well i will be in the near future have u not got family that can help with a kidney

The first question the doctors always ask me is if anyone else had it in my family, as far as I know I am the only one, so I don't think it always runs in the family

Hidden in reply to 123432

You can get this disease by mutation. Unfortunately once you have it you can pass it on in your children down through generations.

ladyt62 in reply to Hidden

That's what i have didn't no before i had kids but 4 out of 5 of my kids have it to one of my granddaughter who is only 7 is in 1st stage of kidney failure

So sorry to hear this!


Hi, sometimes if you have scans in your 20s, they can't see cysts.

However, at your age, they should be able to tell you if you have cysts or not, by a simple ultrasound.

Sometimes so, I was diagnosed in my 20s


You everyone for your advice xx


You can have a simple genetic blood test to give a definitive answer about whether you have PKD. There is no set time for symptoms to start and in my family where PKD is rife the range is massive. Ask your GP to refer you to a Geneticist for counselling about this disease. This entails 1 short session for the blood test, an explanation into the genetics and a form to fill plus a session for the results. Scans only show the picture at the time like a photograph and kidney cysts can be microscopic so you wont see them. They will offer blood tests to your family and if wide enough samples are gained it may be possible to predict the chances of passing the disease on to future children. There is also a PKD research project in Cambridge asking for DNA samples of affected individuals (minus any other data) so this a good opportunity to send your results to them also and help research into this pretty awful disease for future generations without any extra hassle or pain.

Generally Genetics Depts can be found at Women's Hospitals and they usually come out to your local hospital to see you and your family.

Rescanning is overall a waste of time and a much more expensive and time consuming process which as Ive shown above to be possibly wrong.

The PKD Charity, Kidney Research and the National Kidney Federation are great sources of help. The PKD Charity even puts on roadshows across the UK. and are the two best UK sites although the US site is more accurate in terms of symptoms as UK drs tend to underplay symptoms.

Im 41 and on HDF dialysis. 70% of my family on my mothers side have this disease including my brother who was diagnosed at 14. Hes not on dialysis but I was diagnosed much later but it advanced much quicker. Both of us were advised to head for low stress office jobs by consultants and told to avoid lifting heavy items. That has worked for my brother as hes not as bad as me and is just one year younger and a teacher. I was an assistant accountant and it has helped screw me up. Getting this info early is good because at least you can plan for the future and legal restrictions have removed some of the insurance problems that once were in place. My brother has had no problem getting insurance policies. If positive there is no chance of critical illness cover and life cover is only weighted a little.

You are so right coz i have mutanted. Version and 4 out of 5 of my kid have it and so far 2 out of 4 grandkids have it my 7yr old granddaughter is already in 1st stage of kidney packing up

I have about 65% of my left kidney obstructed with cysts, and a large portion of my liver as well, which gives me an enlarged liver double the size it should be. In spite of this my blood, urine, and creatin levels come out normal.

Having worked around researchers, I've learned that a lot of our medical diagnostics is actually very limited and tend to only show symptoms far into the development of a disease. The best diagnostic we have so far, is ultrasound and CT or MRI scans but even they tend to only show a problem well into advancement of a condition so none of them really offer a preventative diagnosis.

There is a huge increase of this condition with high acid foods. Our diets today are extremely high in acid. I did not use to be aware that even the drinking water is high in acid. You can keep the condition in control with alkaline and meat free diets. Always monitor your body's acidity levels. That's my experience. Medicines will only conceal it while agitating the kidneys and liver even further.

For anyone that can afford it, I highly recommend a live and dry blood analysis to assess how the blood cells look. The shape of the blood will reveal the condition of your acidosis levels.

tingaling69 in reply to PKDUK

Is this really true?....I'd heard this before but didn't know if it was true....what foods should we eat


They told me the same, cysts showed up on an ultrasound I was a 30 year old male at the time. I'm now 50 and still male.

Just go for a simple imaging test and you’ll find out.

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