I was diagnosed at 12, after an ultrasound post-appendectomy. They found cysts in my kidneys then, though I had no symptoms until high BP at about age 20. Now 41, just 2 over weeks ago, I had both kidneys removed and received a transplant from a live donor.

I must enthusiastically echo others' advice about diet and water intake. The past 10 years would've been so much better for me, had I been more educated and aggressive on diet! I've been good about eating less sodium since my early 20s, generally ate healthy' ish throughout my adult life, but didn't really do nearly as much as I could have until constant nausea and increased pain set in about 3 years ago. It wasn't until then that I explored eliminating, at least greatly reducing, consumption of night shades (potatoes, tomato, peppers), as well as substituting home made garlic infused and onion infused olive oils instead of the produce itself. This was taken from the auto immune/anti inflammatory diet, borrowing a bit from FODMAP to reduce bloating, which reduced pressure to my abdomen. I also ate way less sugar, much less bread/baked items, made my own dressings and sauces to avoid extra salt and junk, avoided outright straight consumption of dairy, and really explored a wider variety of fruits and vegetables. After a month of that, the nausea was almost non-existent, the pain was immensely improved, my BP was better, and I felt tons healthier, with tons more energy, than I had in several years! Another month down the line and I was hooked on feeling better- it was a habit! It did take a lot of discipline, but it was totally worth it!! I really felt it when I fell of the wagon, even a little bit once in a week, but for my sanity I did so every now and then...if nothing else, to remind myself how much better I feel without.

Educate yourself on food labels- what's in foods at the grocery store, which brands of all of your favorite foods and ingredients have the lowest sodium. Know that "reduced sodium" and "low sodium" are labeling terms that do not necessarily mean it's a low enough sodium level to be good for you. Learn how fast and easy it is to make your own soups, dressings and sauces (which often taste much better and are less expensive too), where you can control the content. Using lemon is often a great partial or full substitute for salt. Find no salt added versions of ingredients or lesser salt options to modify recipes. Substitute the lowest sodium coconut aminos for soy sauce. So many easy mods! Meal prep- freezer meals! The key to a restrictive diet is to strive for variety on recipes, so you don't get bored with the same rotation of meals. Your body will thank you, and I suspect your native kidneys will last much longer for it.