I get a lot (okay, not a lot, but let's pretend half a dozen is a lot) of emails from people who find my blog who are newly diagnosed that ask me lots of questions. How do I keep my BP down? What diet do I adhere to? What alternative methods are available? How do you manage pain?
Biggest one of all--HOW DO I STOP THIS DISEASE FROM PROGRESSING?
I don't really have any answers, especially not to the big one. But 4 years into this, I've learned some things. And I've given up some things. And so this is how I live with PKD:
I eat like a normal person. Over the years, I've tried lots of different diets. I even went vegetarian for a year, and the result was increased creatnine levels, 10lb weight loss (which sounds good, but can be really bad. In my case, it was bad), and a constant feeling of hunger and general crappiness. I was happy and relieved when Dr. Steinman's dietitian told me that eating a cup of broccoli with my hamburger was probably more beneficial than leaving out that hamburger altogether.
So now I just eat mostly normal food. I work hard not to eat food out of the box, to prepare stuff fresh. I don't always succeed, and I don't beat myself up about it the nights my family eats Kraft Mac'n'cheese. I don't eat ham, bacon, beef jerky or sausage (well, okay, sometimes I eat sausage, but only if my husband grills it) because of the high sodium content. I almost never eat canned food, and if I do buy it, I always (or I try to always) buy low sodium varieties. Since changing to this diet, I've gained back my 10lbs (which is a good thing), my creatnine has stabilized, and, most importantly, I feel a thousand times better. So, that's what I'm going with until somebody tells me something different.
I manage my pain with exercise. And not only some exercise--really regular exercise. I need to work out at least 3 times a week to keep my flank pain away, but when I do manage that, it's like magic. No pain. I know that I haven't been moving enough when I feel pain again. It's not an exact correlation; last night my kidneys were really bothering me, and I ran a 5k on Saturday and another 3 miles on the trail on Monday, so sometimes pain just comes, no matter what. But flank pain used to be my constant companion. Since I've stepped up my activity, that's not the case. And that's been really nice.
I keep my BP down with meds. I'd like to say the exercise helps, and maybe it does, but I wouldn't trust exercise alone to keep me healthy. That's the bummer part of it all, but I'm grateful for meds that keep me stable.
I don't know how to stop this disease from progressing, but I do know that thinking about it can make a person crazy with fear and anxiety. I've worked through that part of the equation with some anti-depressants. I've never been on them before, and I was hesitant to add another medication to the mix. After all, can't I just depend on the endorphin rush from running to keep me sane?
Apparently not. The night my husband found me, at 3am, curled up in the bathtub sobbing was the night I decided that I couldn't live like this.
I'm grateful for those kinds of meds, too. With them, I'm able to approach life with a lot less anxiety and anger, and my family has benefited from having a wife and mother who is physically AND mentally stable. I have been told, as a rough estimate, that probably about 50% of people with PKD are being treated for mild-moderate depression. So either PKD is kind of a big thing to manage emotionally, or genetically, we're all seriously whacked. Either way, I love my Lexapro.
So that's the gospel according to me. Everybody is different, and I don't expect everybody to live like me. Coming up on the 4th anniversary of my diagnosis, this is how I am living with PKD.