Note to Self: What I wish I knew when I was diagnosed with kidney disease

Editor’s note: The following essay is the 1st place winner of Renal Support Network’s (RSN) 14^th Annual Essay Contest. It is reprinted with permission from RSN. This year’s theme was "What Do You Know Now About Chronic Kidney Disease That You Wish You’d Known When You Were Diagnosed?”

They say hindsight has 20/20 vision. “If I knew then what I know now,” we say, assuming we would make “better” decisions. I am surprised, impressed and continually learning from the decisions I make in the face of the adversity of living with Kidney Disease. I navigate as I go and have discovered myself in the process. No guarantees I would have made better decisions, but if Sasha 2016 could have given a few tips to Sasha 2012, they would sound something like this:

Dear Sasha,

You just turned 40, and got the shocking diagnosis of End Stage Renal Disease. You’re about to enroll in the School of Hard Knocks. The lessons will be tough, but you will discover you have more strength than you thought possible and value life more than you thought yourself capable. I see that cynical look, but it’s true! Besides, by 44, you’ll definitely understand that furrowing your brow has lasting effects.

There is no blueprint that works for every KD or dialysis patient. It takes experimentation to figure out what works for YOU. It’ll often be (truly!) miserable, but be like the student in Chemistry class who blows up a few beakers to find the best result. You know your body best. Do your research, know your disease and always educate yourself on the latest theories, gadgets and trials. With the knowledge and power to guide your own reality, you’ll fall into the swing of “living on dialysis” faster and easier.

Yes to Peritoneal Dialysis over Hemodialysis. Not even a question!

Don’t stop your exercise regimen. Like a disobedient toddler, your body will not always cooperate with you. You will feel fatigue you haven’t felt since listening to your 8th grade History teacher and some days you’ll feel so weak you won’t even want to lift a hairbrush, but it’s temporary. When you regulate your dialysis routine, you’ll jump right back on the horse and by 2016 you’ll be working out four days a week and feeling energetic.

Take photos of that unblemished, flat tummy of yours, free of catheters and stretch marks because you can kiss that goodbye! “Head” shots, too: dialysis gives you face blemishes and thins your hair, so while you look 30 at 40 with luscious locks, you’ll look decidedly older at 44! Once you’re completely in control of your PD regimen, you go up a few pant sizes too. But you’ll appreciate having an appetite and feeling well, so a few extra pounds is more of a gift than a curse. Invest in yoga pants – they stretch! And start experimenting now with high protein recipes: “Protein!” is your new mantra.

Take your phosphorus pills. Each time you don’t, it’ll feel like you went dancing in poison ivy, your feet will itch like nothing you’ve ever experienced, just your feet, but it will be that itch that can’t be scratched though you try like your life depends on it. Make sure to prime your line three times when connecting to your cycler (which you name Nelson because it gives you life and freedom, the things Nelson Mandela spent his life fighting for) – otherwise you get the infamous shoulder pain which is, well, awful.

Start a money jar. If you throw in a dollar in for every time a well-intentioned person says, “You don’t look sick!” you’ll have enough for a tropical vacay by now. If you also throw one in for every day you wake up and aren’t sure if your body will conspire against you, that vacay will be ripe with caviar and massages. And you’ll quickly learn that most people don’t know much about Kidney Disease or dialysis and less about organ donation. Patience is key, you will eagerly disseminate the same information a bazillion times.

Most importantly, don’t let this disease rule your life, fit it into your life and do what is necessary to lead a full life. You won’t want to travel for a while, but know that even though it’s a hassle, it’s worth it. You’ve got the travel bug, so don’t let this disease take away what you love.

“I’m still waiting for transplant four years from now?!” you’re screaming incredulously. Yes. You live in L.A., so the list is longer than Santa’s naughty list, but in the hopes of having many really good years post-transplant, use these tips to get through each day and it’ll be over before you know it. Trust yourself and everything will be ok.

In Yours We Trust, Sasha. -by Sasha Couch