My husband almost died a couple of weeks ago.
Okay, so it wouldn’t have happened two weeks ago. It probably wouldn’t have happened this coming week. But it would have happened eventually, and much sooner than either of us would have liked (as in, according to the nephrologist, probably within a few months).
I’ve mentioned before here that Phillip’s been sick for a while–since Thanksgiving of 2013, to be exact. Or, rather, that’s when he got REALLY sick. Looking back, we can actually begin to see when symptoms started to pop up, they were just erratic and had no rhyme or reason, that it was easy to think he just had a stomach bug or his allergies were acting up and making him feel nauseated.
It ends up, after some self-diagnosis and doctor-diagnosis of GERD and mild gastritis, that we were all wrong.
He’s in Stage 5 Kidney Disease, or End-Stage Renal Failure (ESRF). A man who’d always been healthy and active had undiagnosed high blood pressure, which caused his kidneys to stop working as effectively. When we went to the ER on June 9th (and Jesus, that was my younger brother’s birthday, at that) they found that his kidneys are functioning at about 10%, and he was extremely anemic.
The next few days were scary. I mean, really scary. We barely slept (because, hospital, but also because we were, well, scared). We had no clue what was going on, just that Phillip was really, really sick. He had to have a blood transfusion that first night in the hospital because his hemoglobin was so low. The next day the nephrologist had a bunch of blood drawn for various and sundry tests (all of which eventually came back negative, leading them to the high blood pressure diagnosis). Originally, they’d thought they might do a biopsy on Phillip’s kidneys to see if they could determine the cause of the renal failure, but Dr. Nasser (the nephrologist–who was amazing) decided the risk was greater than the small chance of a reward, and nixed that. Phillip had a perm-cath (a permanent catheter) put in his chest so he could start getting dialysis treatments.
And we found out he’s definitely going to need a kidney transplant.
Luckily dialysis seems to be helping. He’s eating three meals a day now and actually has somewhat of an appetite again, but he’s also exhausted from the dialysis (we think they’re taking too much fluid off of him, since he can still pee–yeah, apparently when your kidneys get this bad you stop peeing, which just seems really weird to this woman who pees probably every hour or so). Also luckily, we don’t have to follow a strict renal diet because his phosphorus and potassium levels are actually low. We just have to watch the sodium because of his blood pressure (which has been too low here lately).
The past couple of weeks have been a blur. There’s been so much information, from learning about dialysis to transplants to ESRF in and of itself. We’re trying to get the ball rolling on the transplant ASAP, but his health insurance makes it all sound incredibly confusing. One person tells us it’s patient-driven to get the ball rolling. Another tells us the dialysis center will refer us to a transplant coordinator. If I’m reading his health insurance summary of benefits and coverage correctly, we have to be referred and contact insurance before we can do the intake exam with the transplant coordinator, AND we have to go through one of their transplant Centers of Excellence. If that last part is the case, that means we can’t go through a transplant center here in Austin, but have to go through one in Dallas, Houston or San Antonio. Lovely.
At the forefront of my mind, though, is the fact that I could have lost my husband. If we hadn’t gone to the ER that Monday (Phillip had gotten progressively worse over the past week), he would have died.
I haven’t had him long enough, therefore that is completely unacceptable to me.
I know God has a plan, and that when it’s your time that’s it.
But dammit, I haven’t had him long enough.
And let me tell you, it’s a really, really weird thing to be lying there in the hospital, unable to sleep and praying to God and then thinking, “If he dies, I’m making sure they collect some sperm, because he has to live on in some way.”
Times like these are trying to say the least. They test your relationship. They test your mental and emotional strength. They test your faith.
If anything, this will only make our relationship stronger. Phillip feels guilty for putting me through this (even though he’s the one who came close to dying and who’s really freaking sick), and I keep reminding him of our wedding vows: for better or for worse, in sickness and in health. I meant them when I said them, and I still mean them now. God knows he’s put up with my crazy issues for the past five and a half years–it’s my turn to shoulder the load for a while. We’re a team, and that’s how teams operate.
I know he worries about me. He keeps telling me to let it out, to just cry, because, well, I cry. That’s my thing. When my emotions get to be too much for me I cry. I write. I let it all out. I’ve lifted the top of the pot a little bit, let off a little bit of steam last Wednesday when I broke down because his parents are so wonderful and I was weirdly upset that when things were really scary and shitty that week in the hospital I didn’t have my mom to comfort me and to cry to. I guess that’s my fault. Whatever. There’s a lot of hurt and a lot of pride there, along with a fuck ton of stubbornness that apparently neither of us will ever be able to get beyond. I had Phillip’s parents. I had a couple of my family members offering emotional support and prayers. And we both had friends and family who helped (Mikey and Andi), who asked if they could donate blood to offset the cost of the transfusions (he ended up having to have 3 pints of blood while in the hospital, all of which should be covered by insurance from what we’ve been told), and at least a dozen people who have offered to donate a kidney if they’re a match (to all of you–thank you–I don’t know if you realize just how much that means to us). (And yes, I realize this paragraph is most likely a bit passive aggressive. And yes, Mom, I know you read this blog. And I do love you, and I’m sorry the flowers I sent you on your birthday upset you. I apparently suck at trying to mend figurative fences.)
Phillip has to go back to work tomorrow. I’m worried about him. Worried about him accidentally bumping into something or someone, or someone bumping into him and jostling the catheter too much and causing damage or bleeding, which is scary since it goes directly into an artery and if it’s ripped out he could bleed to death (and dammit, I haven’t had him long enough). I’m worried about him being tired. It apparently takes a few weeks to get used to dialysis treatments, and right now he’s just tired and sleeping a lot. We’re trying to work with his company to see if he can work from home–that would be the best possible outcome. He needs to work, for his sanity and, hell, to be honest for the income. We’re middle class. We have bills, and we have more coming our way after a week in the hospital. Besides, research shows that dialysis patients who continue to work while receiving dialysis treatments actually do better than those who don’t. I guess having something to do, some other purpose than getting hooked up to a machine helps improve your quality of life? Who’d a thunk it? (Yes, that was mild sarcasm.)
I keep having to force myself to stop second guessing myself and looking back and thinking I should have done more, forced him to this doctor or that doctor or to the ER sooner. It wouldn’t have done any good, because by the time he got really sick last Thanksgiving, his kidneys were already shot. This didn’t just happen overnight.
Despite all of this, though, there is some good news, or at least a bright side. Other than Phillip’s kidneys going bad, he’s otherwise a healthy guy. He’s young. He should qualify for a transplant with no problem. Hopefully we can find a living donor; if we do, that cuts the process down to about six months or so, from what we’ve been told and what I’ve read. If we can’t find a living donor, he’ll have to go on the transplant list, but from what we’ve been told he would probably get bumped up pretty high because of his age, his overall health, and the fact that he’s at 10% kidney function (most people get put on the transplant list when they hit 20%). Obviously, that process would take longer, so we’re hoping for a living donor. And while Phillip was in the hospital I started eating three square meals a day again. My restricting had been getting worse and worse, in conjunction with Phillip getting worse and worse. He woke up that Wednesday morning hungry, and it was like I all of a sudden had permission to eat again. I know it’s a control thing, and I know I’m going to have to be vigilant through the transplant process because there will be times when I have no control over anything. Hopefully he’ll get to work from home–that means he eats three meals a day, which means I eat three meals a day.
The biggest, bestest bright side, though?
I didn’t lose my soul mate, my husband, my best friend. He’s alive and kicking, and I’m doing everything within my power to make sure he stays that way.
Because, dammit, I haven’t had him long enough.