increase in kidney size in general may mean an advance in PKD but not necessarily a loss in function.
the best way to tell your daughter might be to tell her about yours first and in a later conversation let her know it is a generic disease. you should also tell her the advantages of following the healthiest lifestyle possible. many 25 years olds feel bulletproof but it is still good advice for everyone whether or not they may have PKD.

Hi Dixie, I have not had a confirmed diagnosis since there is not family history of pkd for me, but ultrsound and CT scans are highly suggestive of pkd. I too just in the last couple months have found out and I am 38. My labs are normal, cysts (one whopping 10 x 8 x 5 cm) were found through an ultrsound when looking for something else.

First off, I think its great you have been so healthy for so long, I hope that I too will be able to stay healthy for a long time, as I have read many people have problems much earlier in life.

As for talking to your daughter, I would just be open and honest. Tell her about your diagnosis and just come right out and in the same discussion tell her she should know that this can be a genetically inherited disease. I personally would want to know so I could fully educate myself. My mother suffered from and eventually died from Multiple Sclerosis at the age of 60, she was very sick for a long time. Dealing with diesease if best when you have honest, open communication and a good support system from friends and family.

Finally, I don't know how things work in the UK, but here in the States insurance costs are high. I have specifically chosen NOT to be tested to confirm a PKD diagnosis as if it is confirmed, then I will have a great deal of difficulty in obtaining reasonable priced insurance or even getting insurance such as life insurance. I instead will manage as it is presumptive PKD given the number of cysts I have (at least 6 on each kidney). I don't know how things work in the UK, hopefully not the same. Keep us posted.

Welcome Dixie. As the others have said, cyst size is not necessarily an indicator of function. The good news is that you can have large cysts and great function. The bad news is that sometimes with large cysts, even if the function is good, there can be some pain and discomfort. Getting a new diagnosis is never fun, but as we are fond of saying around here PKD is NOT a death sentence. It also varies enormously in its severity and symptoms from person to person.

I found out I had PKD much in the same way your daughter will find out that she has a chance of having it. My mom was diagnosed and then I got tested at 19 and found out I had it too. (so does my sister, but not my brother) It did not worry me greatly or affect me much when I was younger. The best thing your daughter can do (whether she gets tested or not) is to stay away from smoking, eat a healthy diet, get exercise, absolutely avoid cola, especially diet cola, and limit caffiene while drinking LOTS of water.

Please keep us updated on your condition, and feel free to ask lots of questions.

welcome. one thing I've learned in all of this is that kidneys are funny things and that sometimes how sick you are and how sick you feel are closely related, and sometimes they are almost night and day. testing your creatinine levels will definitely give much more detailed info, and hopefully your doctor can work with you to help you help your kidneys function as well as possible for as long as possible.

I don't have PKD, but my husband does, as does his mother. he was younger when his mother was diagnosed, so he did know fairly early on that it was genetic, though as others have said, he did feel pretty invincible - even after getting diagnosed. one thing that is important to consider is that knowing that she is at risk gives your daughter the opportunity to make decisions around family planning that many people don't have, because they don't know they are at risk. in canada my husband and I were able to meet with a genetic counselor who explained the inheritance patterns of PKD and what that meant for us if we choose to have children, and also what options exist and which of those options our government would help pay for. it's not a perfect system, and it's certainly a strange conversation to have, but we definitely appreciated understanding what our choices were and being able to make informed decisions accordingly. That being said, everything about getting tested, and potentially making family planning decisions related to PKD is highly personal - many people feel very strongly either for or against, but ultimately each person needs to decide what is right for them.

wishing you and your family health and happiness in your journey

Hi, thanks so much for everyone's comments. I am blessed that in the UK we have a national health service so there are no insurance problems. I have been lucky to have a GP (the local doctor) who will happily refer me to specialists which is how I got the CT scan and diagnosis. I have an appointment with a urologist in a couple of weeks to see if anything needs to be done about the kidney stone. I discovered a couple of days ago that my GP had all the results from a blood test done in October. This was done due to bowel problems, which after a colonoscopy (and the CT scan) seems just to be IBS. Anyway, joy of joys, my GRF in October was 68, creatinine and haemoglobin well with normal levels and BP 130/70. The doc did my BP again on Thursday and it was 110/70. I am hanging on to the idea (which I know may simply be wishful thinking) that my levels and the fact I still have no symptoms mean that I have PKD2 and will stay at stage 2 for a long time! Spedteach-really interested that you say your CT scan is highly suggestive of PKD. The letter about my scan reads "there is polycystic liver and kidney disease but no solid masses." I guess I just accepted that was the diagnosis, but maybe I could have some odd mutation of simple cysts?? Clutching at straws again:) Spiderwoman, thanks so much for your idea about how to break this to my daughter. I am going to wait until I've seen the urologist (and I guess I should see a nephrologist too?) to ensure I know the full facts and then I will start talking to my daughter about it. Thanks again for taking the time to reply, really appreciate it. (And sorry for the long post!)

I am so glad you are not having any major symptoms from PKD. Many people don't even know they have it until it shows up in an incidental finding. 50% of the people who have it will never have a problem However, the other half do. Re kidney size... from what I understand some people's kidneys will get huge (mine were 25 lbs between the two of them) and some wont. And some people with big kidney may have great function, or not. And the other people with little kidneys may end up on dialysis. There are a whole bunch of complications that can't come with this disease. Even identical twins who have it can progress very differently. Learn everything you can about PKD... knowlege is power!

Thanks deedles. I think I am learning quickly that there is no 'average' factor with PKD! Your kidneys sound really big - mine may be too! Don't know yet. Can you actually feel your kidneys by self examination?

Hey, sorry deedles. Just been reading through other posts and realise you have had a double nephrectomy. Sorry my previous post must have sounded insensitive. Hope your dialysis regime is settling down a bit now.I taught in special education for many years. Fingers crossed you can get back to teaching, or working with children in some way.

Dixie101-
My CT scan said "findings are suggest an asymmetric variation of ADPKD" maybe the difference has to do with the UK vs US medical systems. I don't think most radiologists in the US make diagnosis (I might be wrong). I think they report what they find and then leave a diagnosis to the doctor who ordered the test. That's why my doctor said its highly suggestive I have it, but with no family history to be sure I would have to get tested, doing so could limit me with insurance when I retire although that is long way off.

Deedles- How right you are... my cysts were found because of looking for something else. Wow... 25 lbs were what your kidneys weighed. That seems so much and must have put extreme pressure on your body. I often wonder how much of my weight is from the cysts I have, with them being so large. I am new to all this and understand how the disease effects people so differently. I think the one thing I can't still get my mind wrapped around is that extremely large cysts are not removed or aspirated. I understand the disease causes more and more cysts and to remove or asiprate is not a solution to the problem. However, it boggles my mind that kidneys can be functioning so normally with such cysts so large putting pressure on them.

I read a report from JASN that had a graph positively correlating kidney size with blood pressure and inversely with GFR. So in general big kidneys are bad news. There are always exceptions but when they test drugs like tolvapatan for efficacy in pkd they look at reduction in the increase in renal volume. Tolvaptan, in trials, cuts the growth rate in half, which would conceivably delay kidney failure by decades.

Yes I guess that would make sense. From what I've read the cysts in themselves are benign, it's the pressure on other organs and volume of the kidneys that cause the problems. Still don't know how big mine are! I am going to ring the hospital today to ask if the measurements and number of cysts were recorded on the CT scan. The letter from the radiographer doesn't give any of those details.

I was diagnosed six years ago on the basis of an ultrasound scan, with no family history. My kidneys were by then huge and completely taken over by cysts.(I later found out that function remains good). The radiographer didn't say anything, but afterwards a nurse bustled in and announced with a big smile, "There you are you see; it is PKD" . I had read about the possibility of this diagnosis before the scan, and was devastated. This was NOT the way to find out.

As for telling the children, mine are 12 and nearly 15 and we haven't mentioned the genetic factor yet. The first consultant I saw advised against testing them until they are at least 25, as before then it may not be clear whether they have it or not. Also, he suggested they should already have life insurance in place, as this would be affected. We're in the UK, so there is no problem with health care.

The following link gives the UK diagnostic criteria:

http://www.patient.co.uk/doctor/autosomal-dominant-polycystic-kidney-disease

Although it doesn't necessarily change anything if you are already making healthy life choices, if you're like me, there is a gnawing need to know the facts. I hope you will have the information that you need soon Dixie and spedteacher, and that you fare well.

Best wishes,

Chewitt

Well results of another urine test today. All clear, no protein, no blood. So apart from a GRF of 68, I appear relatively 'within normal limits'! The hospital won't give me a copy of my CT scan because it is 'the property of the NHS'! Its a good job I contacted the hospital where I have my urology appointment (different hospital) on the 28th to confirm that the urologist has received the scan, because he hadn't. If I hadn't telephoned, the second hospital wouldn't have requested the scan from the first hospital so I would have turned up for the appointment and the urologist would have only had the radiologist's letter, not the actual scan. Bit shambolic isn't it! Hope everyone is feeling okay.
Chewitt, that was a dreadful way to find out. Yes, like you I want to know all of the facts. I need to be in control!

Chewitt - Thank you for the valuable information and for sharing.