My dad was diagnosed in his early 40s with pkd. He was lucky as he didnt have to start dialysis until 3 years ago aged 74. I have been scanned and my kidneys are ok I'm in my 40s my worry (other than my worries for my dad) is if I don't have it now could I still get it and what about my children? I keep getting conflicting advise!?
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PKD Charity for Autosomal Dominant PKD
As far as i understand, if you havent got PKD now, you havent got it, and therefore you cant pass it to your children. My mum had PKD, so do i. My sister was tested in her early 50's ( a couple of years ago). an ultrasound scan. she had no polycystic cysts and was elegible to give me a kidney.
PKD pops up at any age.
Hi.My father has pkd and myself and my sister took the scan i was in my late 20s my sister was clean but i was not im now 40 and in stage 4 with a function of 18 .when i aske about my children i was told they couldnt be tested till pubity around 16. i may also ad my father has two brothers and they and all thire children do not have pkd. so you are safe and as far as the children are concerned you can as for them to be tested .
My brother was diagnosed at 14. It is complete rubbish what you have been told.
There is only one way of testing that will give you an answer as to whether a person will ever get PKD. That is by blood genetic testing. Ultrasounds only give an answer at a point in time. The disease can still pop up and the machines dont pick up all cysts.
The fact is that PKD is like a lotery and even if you do have quist it doesn't mean you will develope kidney failure, my aunt is in dialysis for ten years now but her kids are both clean and they are over their 30.
My father had it too, and me, my brother and sister have it altought I am one year older than my sister my function is 15 but my sisters is very good.
About my kids, they still need to be checked.
I have always been told by the doctors that there is a 50% of having it if it runs in the family,
We hope my kids are in the right 50%.
If you are on dialysis your kidneys must be below 10%. This is standard NHS procedure.
Yes it is 50% every time.
Thanks for all your replies. They are talking about transplant for my dad as he's in stage 5 but he won't let me donate incase I did ever get it.
Where do you live in the UK? If you do want to donate one of your kidneys to your dad, it might be possible to get a genetic test done to confirm that you don't have PKD.
That way you will know for sure that your children won't have inherited either.
We're in Hertfordshire. Dad is under the lister hospital. I did ask for genetic test and my doctor sent off and asked but they won't do it. They say its not necessary! I suppose I could say as I want to donate could it be done. My dad is really against it he is worried as he was told te risk for me is higher than for him? Is this right?
The transplantation process is harder for the donor than the recipient but would not go ahead unless the donor is absolutely tip top condition. The tests they do with potential donors decide this mentally and physically.
There is still a small risk of mutation giving PKD to them.
They would test you for it via blood test before allowing you to do it.
Like I have said you could donate but must be in great health.
We have been unluck in our family (Grandmother, mother, 3 daughters, as it stands at present 4 out of the 5 grandchildren) Myself being one of the daughters, however as stated above it is a lottery on who gets it. Even though you do not have it, it might be wise to have them tested anyway. Good luck
Over 70% of my mothers side of the family have got or had it. It has killed as early as 29.
Oh Mark and I thought my family had it bad the youngest to die was my mother at 45, I think the youngest to be diagnosed was my eldest son at 9 (all 4 grandchildren that have it are boys).
PKD can popo up at any age whatsoever. The only way you can find out whether you have it is to ask your GP for genetic counselling. During the process you will have a sample of blood taken and they will look for the gene defects of PKD. You will then know whether you will EVER get PKD whilst ultrasound testing will have to be repeated annually for the rest of your days.
If you have got it you will probably be given the option of contributing your blood sample to a PKD research project. You will also be offered testing for the rest of the family. With a kidney performance of 15 you should be under the care of a renal consultant and are likely to have something wrong. At this stage you need to discussing dialysis with the consultant. Every time you have a child there is a 50% chance that he/she will have PKD. No more, no less. There is also a chance that ANYONE can get it through genetic mutation. This means if you dont have it your children could still get it. Have a look at the PKD Cure website and kidney.org.uk. Its on google. There is also a UK PKD Charity.
I have it. A lot of my mothers side have it. My one and only brother has it and Im on dialysis.
I was never offered genetic testing, scan in 88' confirmed it!
Tests can be done at any age whatsoever. It is rubbish to say otherwise. Ultrasound tests have to be repeated annually whereas blood genetic testing doesnt but costs more so drs dont like using it. Obviously there are consent issues to consider etc. A leaflet on testing issues is aailable free on kidney.org.uk
My brother was diagnosed aged 14 so it is absolute tosh what some GPs are saying.
My doctor was happy to refer me for genetic testing it was the department that does it that said not necessary. Think i will have to try and push the issue!!
PKD isn't something you suddenly "get", it is something you are born with, and things go wrong all your life. Eventually we find out we have it, but we have had it all the time, with cysts growing even if they are not bothering us.
So an ultrasound scan can show the cysts. Even normal people have a few, and get more as they grow old, but in PKD we have a lot more. I have always understood that by the age of 30 or so, the excessive number of cysts from PKD will definitely show up for all varieties of the disease. So if you are over 40 and a recent didn't show large numbers of cysts you should be fine. Without a scan you cannot be so sure, although not having high blood pressure is a good sign.
If you don't have PKD then you cannot pass it onto your children. So it sounds as though you are just fine, and your children are just fine.
The workup for a kidney donor always includes scans, so there is no way they could accidentally accept you without noticing that they had got it wrong earlier. Tell your Dad to stop worrying!
I was told by the pediatrician that if I don't have it she would not get it. Fast Forward 25 years. Much has been determined since then. In fact when I was tested back in the day there wasn't a cyst anywhere. I was 21, my mom had died at 36 years of age. So that was just 4 years after her death.
I now have two kidneys full of cysts and will be 62 soon. Two sisters have been on dialysis, and one has had a transplant. All related to PKD.
You know forewarned is forearmed. Having PKD is not a death sentence. Find a Nephrologist that specializes in PKD. Remove the caffeine from your diet, drink lots of water, Find out which foods are "poison" for PKD people.
Everything is filtered through the kidneys. Try to avoid ibuprofen products. Soak potatoes for 4 hours before you cook them in water. It helps to remove some of the phosphorus and makes it easier on your kidneys.
It truly is an adjustment but just like if you were diabetic or had cardiac disease there need to be some lifestyle changes. The internet is the most wonderful tool. Find out all you can. Get involved in making people aware of this disease.
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