dialysis thoughts: why doesn't my family seem to care that I'm sick and on life support?#LifeOnTheWaitingList

Some days are harder than others. Some weeks are harder than others. Some months are harder than others.

On the flip side, some days, weeks, and months are easier than others.

Here lately it feels like things have been trending harder rather than easier.

Not that treatment isn’t going well, because it is. Phillip stays pretty stable and his numbers don’t fluctuate a whole hell of a lot. The medical team stops by to chat about random stuff more than they do about his health, because let’s face it, he’s doing a lot better than most people on dialysis.

So I guess it’s all relative, really.

What can’t really be measured, though, is the mental and emotional toll kidney disease and dialysis and waiting for The Call can have on you. It’s even harder to measure the mental and emotional toll of being forgotten.

Okay, so that might sound a little melodramatic, because in the grand scheme of things we know we haven’t been forgotten. There are people who love us and care about us, and who make that fact known. And we are so, so grateful for those people.

But some days those people feel so few and far between.

Look, I get it—we get it—people have their own lives. It’s not that that makes us feel forgotten, it’s more other things, like when someone tells us how much they want to help us but then does absolutely nothing, doesn’t even ask us, “Hey, do y’all need anything?” Because trust me, while financially we’re fine I could use some fucking energy, a landscaper, and a maid (as long as said maid put everything back exactly where it was and didn’t rearrange everything or throw away stuff that I didn’t want thrown away or….screw it, I’ll just do it myself). Actually, y’know, I’d be cool with Disney-like woodland creatures if they did the dishes and cleaned the toilets. Is that really too much to ask?

via GIPHY

Other things, too, just pile on. There are days when I’m glad I can’t reach through my phone or laptop screen and strangle or bitch slap people, because otherwise I would probably be in jail on multiple accounts of assault at this point. Society, as a whole, bitches about the dumbest shit. I mean, the dumbest shit ever. And as a whole, we freak out about really small stuff and somehow a hangnail turns into the end of the fucking world.

Listen, I get it. As someone with generalized anxiety disorder, I so get it. It’s not necessarily the little thing in and of itself, it’s everything else and everything that the little thing could end up being or causing that’s beyond our control. That hangnail could rip off and take half your fingernail with it, which could end up infected and next thing you know you’re in the hospital hooked up to an IV while trying to fight off MRSA. All because of a stupid little hangnail.

That’s the way anxiety brain works. That’s also the reason why I’m not allowed to visit WebMD, but that’s neither here nor there.

What is here or there is this—if there’s one thing kidney disease has taught me, it’s that 1) Prozac is my friend and 2) all those little things don’t seem so big and bad when your husband is literally on life support. Unless he gets a hangnail that gets ripped off and then turns into an infection because if he’s on antibiotics for any amount of time he has to be paused on the waiting list and then has to be taken back in front of the committee for them to approve him being unpaused, which means he would be off the list for anywhere from 3 weeks or up and of course that time would be when the only kidney in the entire fucking world that he wouldn’t reject would come available and he couldn’t fucking take it because of a fucking hangnail.

Perspective, I guess?

kidney disease facts: 10% of the world's population has chronic kidney diseaseAnd speaking of perspective…we always try to remind ourselves that there are others out there who have it a lot worse than we do. We see it three times a week at the dialysis clinic. Hell, this morning there was an older man who was in so much pain from something he was literally crying out loud (and loudly, I might add), “Someone help me!” I think they might have eventually had him taken to the hospital. But he’s missing a leg and is in a wheelchair.

Or there’s the older Hispanic woman who has a tube in her throat and can’t speak and who has the worst hacking cough I think I’ve ever heard in my life.

Or the man who’s on dialysis and who also has cancer and is on chemo so when he comes to the clinic he has to be in the isolation room.

Or the guy who we haven’t seen in months because he’s been in the hospital this entire time. God only knows why he’s been in the hospital, but when Phillip first started dialysis this guy had one leg and a below the knee amputation on the other with a prosthetic. In the past couple of years he’s had to stop using the prosthetic, has had to have the other leg amputated below the knee, and then has had to have both legs amputated above the knee.

Or the numerous patients at the clinic who are homeless. I don’t know who they are (I have some guesses), but I know there are a handful.

And I see those who have it worse every day among my kidney sisters—a group of wives and girlfriends who have formed a few different Facebook support groups that are mostly offshoots of one another, so there’s a lot of overlap. Let’s put it this way, in one of my groups (the one that started it all, really), there are 115 members. The group’s existed for 2 years, and in that time 7 of my kidney sisters have lost their husbands. I want to say that five of them have been just this year, and three within the past couple of months alone (one was last week). And as I write this at least two women who are sisters in kidney are sitting in a hospital with their husbands; one because he’s super sick and is a transplant recipient, the other because the kidney he rejected two years ago is having a lot of problems and has to be removed. And that’s just the two I know about. Oh, and another kidney sister? Her house burned down a week and a half ago and they lost everything. And did I mention that her husband does home hemodialysis? Yup.

It’s just really frustrating sometimes, because I feel like the only people who remotely understand what we go through on a day to day basis are my kidney sisters—none of whom I’ve ever met face to face. And it’s even more frustrating because it feels like nobody outside of the kidney disease community gives a fuck about what we (collectively, those of us in the kidney disease community) go through on a day to day basis, or cares about how we’re doing, or even thinks to share the stuff we share because apparently kidney disease and transplant stuff isn’t as sexy as a GoFundMe for the guy down the street who needs tires for his car. Or whatever. The world in general focuses on the “sexier” stories, which usually involve cancer. Hell, everything turns pink for a whole fucking month for breast cancer awareness, and yet like ten people even seem to know that there’s a National Donate Life Month or a National Kidney Month (April and March, respectively). And even fewer seem to be aware of the fact that 10% of the world’s population is affected by kidney disease. Yes, mortality rates for those with cancer are higher than those with kidney disease, but the number one cause of death—heart disease—can often be attributed to kidney disease because of the strain dialysis puts on the heart. Comorbidities are a bitch, y’all.

I feel like both of us have been a little angry here lately. Or, really, frustrated more than anything else, which can lead to anger. Sometimes I wonder, “What’s the point? Why should I even say anything at all or post something to A Kidney for Phillip because it’s not like anyone gives a fuck?” Phillip often has similar thoughts, although he’s not as willing to admit that as I am.

dialysis thoughts: I don't want to dieI just…I hate seeing what this does to my husband. I hate that he’ll sometimes ask me, “Am I a bad person? Is that why this is happening?” Or “Am I that boring to be around?” Or when he says, “I don’t want to die.” He says that one often, most recently a few hours ago.

And let’s face it, that’s a very real fear. It’s not like the boogeyman or some other figment of the imagination—it’s a very real possibility. And most days I feel like it’s just the two of us, holding hands and facing that possibility head-on.

Just the two of us.