Hey there and welcome to the group. I was diagnosed when I was 16 and as far as I know the only symptom I've experienced is high blood pressure. However that might be from other causes such as diet and stress of course. I do have some other issues such as headaches and abdominal pain also at times but it's not entirely confirmed that it is related to the PKD. My nephrologist has said however that it is possible and also seems to be based on what I've read and seen commented on here.

Hi there lilybell,
I wasn't diagnosed until I was 40, but in retrospect I did have some symptoms: frequent urination, UTIs, some flank and abdominal pain. The advice I would give is to make healthy life choices, as anyone should. Keep your salt intake low, avoid caffeine, drink plenty of water, avoid NSAIDs and take some exercise. Females should avoid oestrogen birth control as it is implicated in liver cyst formation. If I had known some of these things my kidneys and liver may well be in a better state now. The only other thing you need to keep an eye on is blood pressure, but if you make these healthy choices you have a good chance of being well for many years to come. There's no need to dwell on your diagnosis. Look after yourself and enjoy your life.

Lillybell,
The only symptom I had before my 40s was high blood pressure and I was very thankful that I had been diagnosed with PKD at 26 because my doctors immediately put me on the right type of BP meds (ACE inhibitors and later a angiotensin receptor blocker when the ACE inhibitors stopped working as effectively). Considering everyone else in my family with PKD (father, uncle and aunt, plus 4 out of us 5 cousins), were either on dialysis or had died of complications of PKD by the time they were 45, I was incredibly grateful for early diagnosis and very well controlled BP. I have absolutely no doubt my well controlled BP significantly prolonged my kidney function AND prevented me from suffering from many of the complications of PKD that run in my family as no blood vessels were subjected to sky high BP.

Believe it or not, I never had a UTI. All of my doctors are amazed, but it's true. I did get one kidney stone in my left kidney back when I was in my early 30s, but an incredibly poor diet at the time was undoubtedly a contributing factor (far too many colas and virtually no water whatsoever!). The doctors zapped that with sound waves and I haven't developed one since (either in my native kidneys or my new kidney which is 5 months old today!). I did develop a massive polycystic liver and wish someone had told me when I was in my early 20s that a contributing factor can be birth control pill (and probably any form of female hormones; don't know if the IUD with hormones has the same effect). I had a huge number of cysts in my liver when I was diagnosed at 26 and found out years later that my aunt had a massive polycystic liver as well (she was on dialysis for 10 years and died at age 55, but my mom lost contact with that side of the family and I never knew them till much more recently). I was on long-term pain medications for the better part of 10 years until I got my liver and kidney transplant in April. So while I may have started off with a lot of liver cysts, I definitely would not have taken birth control pills had I known then what I do now (I only took them for about 10 years and have met men with massive livers, so it's not just women who are affected...the men never took birth control pills either!). In fact there were 3 of us PKD/PLD patients listed at my transplant center; the men just needed a liver whereas I needed both organs (one of the men had the recessive form of PKD, so his liver issues were different, but he was over 50 and still going strong, albeit on his 3rd kidney; the other man had a kidney transplant had a huge liver).

Take care of yourself. Eat healthy, drink lots of water (2-3 liters per day), avoid junk foods, and get plenty of exercise. Keep track of your blood pressure; an at home BP machine that measures on your upper arm is best, but you don't need to be compulsive about it (once a week or so is just fine; even less when you're BP is nice and low (below 120/75). And live your life to its fullest! All too many of us tend to get wrapped up in our diagnosis and numbers (lab results) and forget to go out and live our lives. While knowing your numbers is good, it's not the be all, end all of life. Live, love and have a fabulous life. And hopefully you'll be the one who belies family history and lives a long, long, healthy life!

Best wishes,
Ruth (aka ihavepkd and ihavepkd2)

Lily, let me cut to the chase. You can definitely prolong the advancement of PKD. I know. 10 years ago, I was informed I would be lucky for my kidneys to last another 3 years. I have beat that prediction by seven and counting. Diet and keeping your blood pressure low are the two most important factors though there are others. Find and print a diet for PKD sufferers and make it an obsession. No salts and I mean none, and no potassium or as little as you can. No alcohol or any toxins other than those prescribed to keep your blood pressure down ( or other ailments you may incur). Anytime you feel a cold coming on, go to every urgent care you can find until one of them gives you antibiotics. Keep infections away from your body. Don't listen to anyone telling you that a few drinks are O.K. Alcohol is a toxin. Period. Any further damage to your kidneys can almost never be repaired regarding cyst growth. The kidneys are incredible survivors but you must protect them. Stay hydrated but do not believe that more water somehow "flushes" your kidneys. It only makes them work harder, obviously. There are other ways of removing toxins from your body which will help alleviate stress on them. Sweating through exercise is one. Some homeopathic "chemical binders" are another. Sunlight as well but DO NOT overheat and swimming in salt water ( the ocean) is incredible. It draws water saturated toxins from the skin and the organ of the skin then replaces those fluids as a result. The skin is an organ and is a cousin of the kidneys. The other is to live the most stress free life possible. Nothing is more important to you than prolonging your kidneys as long as possible. Stay away from miracle cures. In my opinion, there are only two feasible remedies. The group I mentioned above and the second is transplant. There are a couple of legitimate projects going on now, one is creating of a kidney from scratch, ( at least a decade away) but the other is gene cell split pig kidneys grown from embryos which show incredible potential. Pig valves are already used in hearts and pig skin for burn victims. Best Wishes - Joe

Hi Lillybell
I was around 17 yrs old when I was diagnosed with hypertension. The diagnosis ADPKD cane when I was 26 (I am the first in my family). Recently my twelve year old son was diagnosed with ADPKD as well unfortunately because he had extremely high blood pressure. When I was younger I needed 3 types of medication to regulate my bloodpressure and I think my son needs more than one too. What I would suggest you is to reduce on salt, avoid contraceptive pill (my liver weights around 8 kg :(, DON'T SMOKE and what I do is that I put on sunscreen each day (SPF 50) even in winter. Even though my kidneys work 30% and my liver is huge I manage to work fulltime. I had severe problems with high blood pressure during pregnancy. I never had kidneystones fortunately. And I had hematuria twice. Never had infection of cysts. In my early twenties I had urinary tract infections but last 15 years I didn't have them. I eat a lot of fruit and vegetables, no meat, I cut down on proteins and try to avoid salt. You have to find out for yourself what works for you as you can read that every patient had his own complaints. I really suffer from my huge organs and are about to enter the waiting list for combined liver and kidney transplant. I hope that your kidneys will work for many years and that doctors find some real treatment for this disease! Regards from Nicky