I’m Okay, You’re Okay

People will often ask me, “How are you?” For a spoonie on the kidney transplant list, that’s a loaded question. How do I answer?

I could spew the whole unvarnished truth. “Well, you know, I’m exhausted. I’m short of breath, various parts hurt, I’m worried about how my health is impacting my marriage/kids/finances/career, I have to choose my wardrobe based on what the day’s symptoms are, the meds cause wild weight fluctuations, and sometimes the renal diet is a regular bummer. Potatoes, amirite? How are you?”

Yeah, no one wants to hear that.

The alternative is, “Fine, and you?” That’s not very truthful. I’m not fine.

I’m learning that as I get sicker and navigate what my new normal is, not being everyone else’s version of okay is really okay. Continue reading “I’m Okay, You’re Okay”

Finding My “New Normal”

My body isn’t behaving the way I want it or expect it to, and that’s a real struggle.

A prime example is what happened Saturday. I worked a short (and mercifully easy) shift, then came home and changed my clothes. The goal was to get my kids out of the house for a few hours and to give my husband a break. The boys and I loaded into my car and drove to a playground. To my joy, they had painted hopscotch boards.

Back in middle school I was a hopscotch queen. I’d spend all recess with my girlfriends playing. I could hop a board in no time flat.

Well, now I’m 41. And then there’s the added nastiness of my kidney failure and the breath stealing anemia. I temporarily forgot how sick I was, until I completed half my turn. My kids were watching, and I had to finish, but I did it while gasping for breath. Continue reading “Finding My “New Normal””

It’s been a year…

Friends, it’s been a year since I got the phone call I knew would eventually come, the one from my nephrologist saying it was time to get on the kidney transplant list. That call came two days after my 40th birthday. Even though I knew it was a matter of time before my tired kidneys went on permanent vacation, I always hoped for more time.

That phone call shattered me. I spent the next few months making call after call, filling out a neverending ream of paperwork, and worrying about the future. The calendar said I was still young; my kidneys disagreed.

I’ve watched my lab numbers marking kidney function drop over the last year. Right now, I’m at Stage 5, and thankfully not yet on dialysis. I know that without a kidney transplant soon, I will be dependent on machines to keep me alive.

I want to be around for many more anniversaries with my wonderful husband, who loves me through all of my (many) medical issues related to kidney failure. I want to see my sons grow up. I want to help my community more. Without a kidney transplant, though, none of those things will happen.

Please consider sharing my story. You never know where my hero will find this!

<3, Jen