facebook post from august 10 2015

What I didn’t say in this status update was that I was the one that got to tell Phillip that he was losing the kidney. We’d gone by DTI and had labs done and dropped off the 24 hour urine collection, and they told us it would be a couple of hours before they had the results back on the 24 hr, so go ahead and go to Dr. Spak’s office for the infusion he was scheduled to have that morning. When we got there, Dr. Spak decided not to do the infusion that morning because of how high Phillip’s creatinine was, so we went to IHOP and tried to eat breakfast and distract ourselves.

We went back to DTI and I went in and asked if Phillip’s labs were ready yet. He stayed in the truck because he was feeling tired, and because we thought it would just take a couple of minutes to get the lab results. They printed them out for me at the front desk, and asked me if I would like to talk to the nurse about them. Um, yes.

I saw what his clearance was, and even though I had all this knowledge in my head about what clearances meant, my brain got fuzzy and I wasn’t as sure of my knowledge as I had been just a couple of hours before. I needed confirmation that what I was thinking I was seeing was correct, even though I didn’t want that confirmation. So I waited for the nurse for what felt like forever.

When I finally got to talk to her I pointed out his clearance number and asked, “What does that mean, exactly?”

The look she gave me was filled with so much sadness, and she said, “It means he’s losing the kidney. We usually list people for transplant once they hit 20.” Phillip’s was 12.

I don’t know how I managed to walk out of DTI that day, but I did. And then I got in the truck and sat there for about 30 seconds, trying to hold my shit together. But I couldn’t. There was absolutely no way I could hold my shit together as I sat there with lab results in my hand, looking at my husband who had a look on his face like he just knew what I was about to say.

So I broke down and bawled like a baby and told my husband he was losing the kidney he’d been fighting so hard to keep for months. In some ways telling him that was the hardest thing I’ve ever had to do, and I’ve had to do some pretty hard stuff (ahem, therapy and all that entailed). It felt like a death was happening, like when someone you love gets really, really sick and you just know, deep down, that they’re not going to make it. That’s what it felt like at that moment.

I took that day harder than Phillip did, I think (although that night is another story). Yes, we had future craptastic days full of sadness and loss, including the double whammy of his grandmother passing, her going away party (that’s what Grandaddy called it rather than a memorial service or wake), and Phillip having to re-start dialysis the very next day. And then there was the nephrectomy that December because his body was rejecting the not working kidney so badly it was making him incredibly sick.

The only thing I can remotely compare that feeling to that day is what it must feel like for a woman who has a miscarriage (I’ve never had one, so I can only imagine from people I’ve talked to and what I’ve read). There’s all this hope, and a brand new life (that’s literally inside of you, at that), and then suddenly it just gets ripped away. That life gets ripped away, as does all that hope. Yes, you eventually pick yourself back up and carry on, but that emotional scar never goes away. You never forget that feeling. You learn to hope again, and hope that one day you’ll get that gift of life again. But until then, you smile when you can (and sometimes when you can’t), you cry when you need to cry, and you try to hold onto hope even when everything feels so incredibly hopeless.

#lifeonthewaitinglist #akidneyforphillip