I see, so it's worse than affecting you later, it's been doing so already. That is quite unfortunate, as far as I know it has not affected me too much yet. I do have pain and fatigue and have had blood in my urine a few times but nothing too extreme. Considering we are the same age, it does make me feel a bit more concerned than I was already. I do feel your pain though, no one should have to have to go through these sort of things.

Jenni,

Do you have Autosomal recessive PKD? This affects children and is actually a different genetic condition from autosomal dominant PKD which most of us have. You seem to have followed the characteristic pattern of ARPKD. Others with ADPKD should not worry that they will be affected at such a young age. Both parents need to pass on a recessive gene for a child to have ARPKD, and will not be affected themselves. ARPKD is quite rare, and much less common than ADPKD.

Chewitt

Eni,
Sorry to hear about blood in the urine, that's something that I don't think I have going on just yet. But this does raise a new question for anyone who is willing to answer. I think I'll start a new discussion.

Chewitt,
As far as I know my mom has no trace of it in her family but neither one of my parents have been tested. All I know is that it runs on my dads side of the family. So as far as knowing if I have ARPKD OR ADPKD I'm not so sure. Wish I knew though.

Jenna,

Does your dad have PKD? If ADPKD is on his side of the family, he must have it to have passed it on to you. It would be most unusual for ARPKD to appear elsewhere in the family as you need two parents with recessive genes to produce an affected child each time. It is therefore most likely that both you and your dad have ADPKD and that you were unfortunate to have been affected so young.

Chewitt,
Unfortunately, I think that ADPKD is the case. Got the rare chance of it affecting me at such a young age. It just hasn't "shown up" or affected my father just yet which is odd since he is 52.

Some people are lucky and are not affected significantly. 50% of those with PKD never suffer kidney failure. Your dad may be one of the 50% or he may just be keeping quiet about symptoms.

I am 54 and just diagnosed with PKD. There are 9 children in my family and 7 for sure have this disease. 2 are still young and not having any symptoms. I never had one symptom until I turned 53 and that was menopause for me. Now I am getting one symptom after another. UTI, pain under my rib cage, heart spasms, and pain down my leg into my foot. I asked a friend of mine to do me a favor and do an ultrasound on me and she revealed that both kidneys are lined with cysts on the bottoms but they havent blown up at all. I had my blood tests done and my blood is still very good. I have nothing on my record stating I have PKD. My mom lost her kidneys at 80. My question is: Should I go to a kidney doctor or should I just keep watching my blood tests until my doctor informs me that I need to go to a specialist. Is there really much I can do besides the diet and exercise and lots of water? I come from a family of nurses and doctors and they say to just watch it since there is not much they can do. I have already quit drinking soda, no caffeine, no drinking alcohol and am working red meat out of my diet. I am taking a multivitamin called hair skin and nails because my hair is getting thin and taking omega 3 thats it! My urine is starting to get cloudy and that worries me too.

Collectm, the advice that you have been given appears to be the same advice that a lot of us have been given and it's not completely accurate.. From my recent trip to the Mayo clinic, I learned so much more than just what you described. I was told 1 cup of coffee a day is perfectly okay. The most important thing that I learned from the Mayo is to GREATLY reduce your potassium intake. Tomato sauce, juice or anything with tomatoes are to be avoided. Potatoes as well, which crushed me when they said that. They devoted more time to me explaining the dangers of potassium more than anything else. Yes, more than sodium intake.

I asked about the water consumption and was always told to drink plenty to keep the kidneys flushed. Or better yet my neph's exact response was. "it can't hurt." ????? Here is how it was explained to me. What is the number one thing that happens with us PKD patients? Our kidneys can not take out the toxins in our blood, correct? They work overtime trying to clean what they can. If we keep drinking ample amounts of liquid, aren't we placing more of a load on our failing kidneys, no? Yes, we have to drink to not dehydrate ourselves but over doing it is not helping the cause. At my recent stage increase, I really noticed my stomach getting big and I am not a big person. I was placed on a diuretic on a Friday. On Monday they weighed me, I lost 6 lbs in 48 hours. My stomach drastically reduced. I was starting to fill up with so much fluid. And just to add being on 80 mg of a water pill WILL change your desire to reduce your liquid intake, I can promise you that!!!!!

Tkski, is it recommended to everyone with PKD to lower their potassium intake or just people with a high potassium level? I just want to be sure here on the idea when it comes to food intake.

Eng, it's somewhat of a double edged sword. Early stages, you're suppose to consume more to help your BP but in end stages, avoid it ???

http://www.pkdclinic.org/pkd-symptoms/490.html#6d

Generally the advice is not to change your diet unless soecifically told to. You can become malnourished if you eliminate things randomly and unnecessarily, and the effects of that will be worse than not changing your diet. We need to avoid caffeine because it is thought to promote cyst growth. Women should avoid artificial hormones and we should not take NSAIDs. All of us should keep sodium intake low and drink plenty of water. Other than that, there are no changes needed unless you are told that you have high levels of eg potassium, phosphorous, calcium etc. This will show in routine blood tests and you will be told. Please do not start eliminating high potassium foods if you do not need to. This could do more harm than good. Minerals do not start to go out of balance until the later stages of the disease. Mine are still OK and I'm at 30%.

Tkski, I'd be wary of believing anything off of that site. Seems like they want to sell you "Chinese Herbs".

Dear Enigmatic,
I am 60 and I was diagnosed with PKD and PLD back when I was 45. My BP was high and I had pain in my gallbladder so doc ordered ultrasound. Gallbladder was fine but what a shock to see grossly enlarged kidneys and liver. My Mom, who was on dialysis for PKD at the time of my diagnosis, later died from discontinuing dialysis at the age of 73. Starting with my diagnosis I made changes in my diet. It paid off. Last year I participated in a clinical trial for PKD and diet/ water. Low protein, low salt, 4 liters water a day. My eGFR is greater than 60 and the diet has shut off my vasopressin. My son is 29 today and doesn't have any symptoms of PKD. He hasn't checked.

For accurate and updated information for PKD and PLD go to the Polycystic Kidney Foundations website: pkdcure.org
Dr. Ron Perrone conducted the clinical trial I was in last year and the results are in. Low protein diet shuts off vasopressin. Watch the webinars these doctors give on these websites.

I'm a 44 year old female who got diagnosed at the age of 19, I discovered I had it because my mother was feeling unwell (she was age 50) and in going to doctors having some tests she discovered that she had PKD passed on from her father, so my sister (8 years older than me) and I were advised to get tested and we found we both had it, my sister was diagnosed at 27 and me 19.
My mother had to go on blood pressure tablets and started to see a kidney specialist, My sister and I were advised not to have children but we both went ahead and had a son each with no problems, my son got tested at age 16 for PKD but was clear, he has to get tested next at age 21 which is next year and 5 year intervals up to the age of 36, my nephew hasn't been tested.
My mother regularly saw her kidney specialist and my sister and I also, my mother lasted up until she was age 70 before needing dyalisis and didn't really suffer a lot up til then other than some abdominal pain. she wasn't offered a transplant as she was deemed not fit enough as she suffered other health issues not related.
My sister,s specialist was the same as my mother,s but for some reason I had a different one, my specialist unfortunately died after seeing him just once so I unfortunately got lost in the system whilst my sister got regular checks.
A few years ago my mother picked up that i hadn't been checked for ages so I asked my own GP and she said I should be having regular checks and booked me an appointment with a kidney specialist (who turned out to be my mother's and sister's specialist), he immediately had my bloods taken, blood pressue taken and a scan done, it turned out for some reason my PKD was more progressive than my mother's or my sister's.
I see him 3 monthly, I am on blood pressure tablets and suffer some abdominal discomfort, and some abdominal swelling, ( I also have cysts on my liver but they are not an issue), I have to take some tablets for different things that the PKD causes but im not in any severe pain just really tired, I need bloods taken every 3 month and i am just starting to be innocculated against certain things as I think its easier for me to pick germs up and i need to stay well as I am at 18% kidney function and I will need either a transplant or dyalisis in 2 years time, i will be 46.
My mother passed away on New Years Eve 2015, she was 75, she had been on dyalisis for 5 years, it was another health issue that caused her death but PKD was a factor.
My advise to anyone with PKD is stay fit and eat healthy and get regular check ups and follow doctors advice!