This one’s cross-posted from my more personal blog, but I’ve been pretty open with y’all about things so I figured I should go ahead and post it here, too. If I’m quiet over the coming weeks and months, this is why…
On Monday, August 10, we found out Phillip is probably losing his new kidney.
Just typing that sentence fills me with a grief and anxiety I can’t even begin to describe.
It’s been a very long past six months. It’s had the highest of highs and the lowest of lows, and all the freaking in-betweens. It’s been…kind of crazy. Exhausting. Exhilarating. A roller coaster ride.
For the past few weeks we’ve had a bad feeling. Part of that was because his creatinine was higher than it should have been, but he was also getting nauseated and feeling fatigued much more frequently. His appetite wasn’t as good as it had been just six weeks ago. They took him off the cipro he’d been on (they thought it might help with the BK a little bit), thinking that may have been causing the nausea. And in a few days he was feeling a little better, so we allowed ourselves to hope that maybe it was just the cipro.
But the fatigue persisted.
And the nausea came back.
His creatinine was holding steady, which was a good sign, and the BK viral load was decreasing dramatically. Two weeks ago the doctors were all “cautiously optimistic.”
And then Monday, August 10, everything came to a screeching halt before falling down like a teetering Jenga stack. His creatinine had jumped up to almost 8 (for healthy kidneys, it’s usually between .6 and 1.2, for someone with one kidney between 1.2 and 1.5 is usually considered to be good). The infectious diseases doctor decided not to give him a dose of Vistide like he’d been scheduled for, hoping that maybe the creatinine jump was because of the medication and not because the kidney was failing. But he also explained to us that usually if you see increases in creatinine from the Vistide, it’s usually in tenths of a point, not three whole points.
Meanwhile, we were waiting for results from his 24-hour urine collection, which measures kidney function. He got fluids rather than Vistide (he has to get fluids with the treatment because it can dehydrate you, but also because of the damage it can do to kidneys), and once he was done we went back over to the transplant institute for his 24-hour results. I left him in the truck and went in myself, got the results and went back to talk to the head nurse about them, just to make sure I understood what I was seeing.
His clearance was 12.
For anyone unfamiliar with the term, clearance is basically a measure of how much blood is being filtered out each minute by the kidneys. Healthy kidneys are between 90 and 130. DTI puts people on the transplant list at 20.
I’d thought I’d had my heart broken before, but nothing I’ve ever felt can compare to what I felt in that moment on Monday when the nurse said, “He’s losing the kidney.” Having your heart break for someone else is…it’s such a different feeling. Somehow more powerful and stronger than your own pain.
I want to say we were surprised, but I don’t know that we were. Was there a little bit of a shock factor there? Yeah, to an extent, but more in the fact that our worst fears were being confirmed. But I think deep down we both knew. Phillip says he knew. I knew, deep down, but didn’t want to believe it, was hoping my gut instinct was wrong. But his appetite had decreased a little bit more last week, and he’d been so, so tired. His color hasn’t been quite as good, and I’d noticed late last week that his breath had changed (when you’re in renal failure your breath changes because the body isn’t filtering out all of the toxins and proteins it should be). I foolishly hoped that maybe it was something he ate, or that he hadn’t brushed his teeth that morning (hey, it’s preferable to the truth), but deep down I knew. I knew what that meant.
Telling our parents was hard. So hard. Calling his cousin (his donor) and telling her was even harder. Thank God she’s such an amazing person–not only for being so willing to give him this gift in the first place, but for the support she’s given us this week and her insistence that if she could do it all over again she would. If anything, I’m incredibly glad Alicia and I have gotten to know each other so well–she’s pretty awesome (even without the whole kidney donation thing).
When I walked back out to the truck, got in, and broke the news to Phillip I cried. I got angry. I asked, “why” so many times I lost count. Last summer when we first found out he was in renal failure I was so, so angry. I was angry at God. Angry at my mom for not being there for me when I needed her (we’re talking again, btw, and words cannot express how happy I am to have her back in my life and how much comfort it’s giving me knowing that this time around I’ll have her to talk to through all of this). Angry at myself for not insisting he go to the doctor sooner. Angry at the doctors who’d all insisted he just had GERD. And I was scared. God, I was so scared.
Which, to be fair, was where the anger came from. When I get scared I tend to get really pissed about being scared. And wow, was I pissed.
On Monday I felt some of that anger start to bubble up again. To be fair, I know that anger’s a very natural emotion to feel at a time like this. So is sadness. Anxiety. Grief. Hope. Yes, I keep wondering, “Why Phillip?” He’s a good man. Such a good man. An amazing person. And I’m not just saying that because he’s my best friend and my soul mate, although those things obviously factor in. He’s done everything right. He’s religious about taking his meds on time (to the point where we both have alarms set on our phones to go off at 9 a.m. and 9 p.m. since the anti-rejection meds have to be taken every twelve hours). I’ve cooked like the dietician recommended. I’ve changed habits–like how I thaw meat (when someone has a transplant meat can be thawed in the fridge, in the microwave, or in a cold water bath with the water being changed every 30 minutes), making sure that I have cold bags when I go grocery shopping to make sure cold stuff stays cold, throwing out anything that’s expired (even if it’s only been a day and I KNOW that orange juice is still technically good), constantly washing my hands (okay, I kind of did that anyway, but I do it even more now), using hand sanitizer and attacking people with it before they touched him (yeah…that happened more than a few times…). Phillip’s done the same things. Hell, I’ve even stayed away from Mexican food because of the cyclospora outbreak caused by cilantro imported from Mexico. Do you have any idea how hard it is to stay away from Mexican food?
In other words, we’ve done everything right. We’ve done everything we should do (well, I could probably keep the house cleaner, but not having a spic and span house was not what caused this damned virus to invade his kidney). So why was this happening? Why are there people who don’t follow the rules–who don’t take their meds consistently or all, who flaunt food prep rules, etc.–who keep their transplants for YEARS and yet my husband can’t even keep his for ONE year?
All of those thoughts have gone through my head this week, but logically I know that sometimes shit happens.
This virus is a killer–literally, it kills kidneys. When they finally caught it and started treating it, it had grown so much in his body and was at levels that were way, way higher than anyone wanted to see. Sure, they caught it early, because it grew FAST, but it also grew so much so fast, that we knew we were fighting an uphill battle.
We knew this could happen; his nephrologist at the transplant institute had told us a few weeks ago to stay positive and hopeful, but to prepare ourselves for the fact that Phillip could very well lose this kidney. Even knowing that, though, it’s still hard to swallow.
He’s so tired again.
I hate seeing it, hate knowing he’s feeling so bad so soon.
His doctor in Dallas told us to wait until this coming Monday’s labs to really know for sure. They’re all hoping his creatinine will go down after not having had the Vistide this week.
We don’t think it’s going to go down. Or if it does, it won’t be by much.
All the signs are pointing to him having lost this kidney–or that he’s close to losing it–and that’s heartbreaking.
I don’t want to see him have to go through dialysis again so soon. It’s so depressing, and so hard on the body. He hates being tethered to a machine for three and a half hours a day, and I don’t blame him.
The bright side–we keep trying to find that in this mess–is that at least this time we have a much better idea of what we’re getting ourselves in to. Dialysis is no longer an unknown, and since we just went through the transplant process we know what all it entails. We know what to expect. And if he does have to go back on dialysis (and honestly, it’s looking like he’ll probably have to since they usually put you on dialysis when your clearance is at 15), at least he’s starting at a healthier place now than he was a year ago. At least it’s not the shock it was last year when we had no idea he was in renal failure.
I don’t know that any of those things will make this any easier, but I’m hoping they will. I’m hoping we can find him another living donor quickly, so that I can get my healthy, energetic husband back.
And, yeah, I’m also hoping for a miracle, that this kidney will suddenly start fully functioning again and we’ll just end up looking at this as a really big, scary bump in the road.