Tuesday, November 24, 2009

The gospel according to me

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?


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.


Becky said...

I just love you to pieces Heather. Thanks for keeping it real! xoxo

RobMonroe said...

It's so hard because there is not a single method to "fix" anything kidney related. Low potassium is the only thing I follow really closely, and that is only because I literally have chest pains if I have too much of it.

But I still splurge, and it does not seem to damage my kidneys more.

Great post, by the way. So many things people CAN try and that work for some people!

Diane said...

I think the biggest thing that newly diagnosed people need to realize is that just because you have a diagnosis does not always mean you'll end up with problems. Lots of people live with the desease and show no signs of illness at all, whilst others end up on dialysis needing a transplant. It's a crapshoot. You can try dietary and lifestyle changes but basically learning to deal with the hand you're dealt is the best thing I would advise.
I follow a low potassium, low animal protein diet (vegetarian for 18 years) and that's worked for me so far. I also stay away from soda and processed foods.

Anonymous said...

I am SO glad that I found your blog. I have PKD and have known for 9 years. As my symptoms have increased, so has my tendancies toward depression & anxiety. I try so hard not to let this define me, but I find myself getting depressed, pissed off & anxious more and more lately. I have been putting off asking my doctor for help, but don't think I can do that anymore. Like you, I thought that I could get by on the endorphines that daily exercise brings (I'm a martial artist), but that's not true any longer. Again, I appreciate your blog & honesty! You are showing me that I'm not alone and that I'm not that crazy afterall!

Depressed Greg said...

Heather....this is a good blog. i have been extremely depressed....i have not considered anti-depressants before. i am just worried about the withdrawal from them if i ever chose to stop them.

i know that i need something. this pkd has ruined my outlook on life for years now. Lexapro huh? I don't even have a doctor for any of it. my blood pressure is a little high. i am angry a lot. some days hurt more than others physically and mentally.
i am really sad about life. i want children...but don't wanna pass it on...i want a wife, but don't want to put someone else through my pain. let alone passing away way before them. i'm 31. if i had kids next year i'd only be around till my kids were like 24 unless a miracle in science happens or i get a transplant....both of which have the odds stacked against me seeing that our government doesn't want to cure anything. cause they make more money from treatment. and barely anyone gets a transplant. And i would never be able to afford the anti rejection drugs....

Anonymous said...

@depressed Greg: That's the kind of thinking you really want to avoid. Especially since the outlook for the condition is not really that gloomy. I wouldn't trade my PKD with Cancer for example, where the treatment itself is so grueling it can kill you while it's trying to kill the Cancer. Things could be MUCH MUCH WORSE.

Notice the pattern in everyone else who is also LIVING WITH PKD. Our wonderful blogger is an awesome example. So the "secret" is, eat as healthy as you can, get some serious exercise at least 3 times a week, AND address your mental health too.

You can do it! Despite having PKD, your life is still yours to live. And, PKD patients have lived into their 90's!

Depressed Greg said...

Depressed Greg

I watched it kill my dad. He was on dialysis for years while it weakened his body. Then the cancer came. Too weak to fight it as it kept coming back he was gone in a year. I wish I would never have been diagnosed. It has made me feel like I have no future past 57 as his whole family hasn't lived past about that age. He had seven brothers and a sister. All but two didn't get PKD. His dad died from it. Especially after seeing what it did to him. I just can't be positive about getting older. Relationships. I want those things. But why burden someone with going through all that? Passing it on to the children. I think about just killing myself all the time. Hardly anyone actually get a transplant. Then in going to live in poverty on SSI like my dad not being able to work. I am a ruined person at 34 years old.