written on Aug 6, 2014
This week I switched to Monday, Wednesday, Friday dialysis (the MWF team) so I could stop having to wake up at 4:30 am. Now my shift is at 1:30 pm – it’s more conducive to getting sleep at night and it insures I’ll be awake during dialysis to get some writing done. Nothing like knowing you’re going to be stuck in a chair for 3 hours while the sun is out to get your creative juices flowing.
There are some not-so-fun issues with dialyzing in the afternoon though – the big one is all the ventilator patients in the center. At 5 am (my prior dialysis time), there were only about 10 of us dialyzing, and all of us were ambulatory (we walked in by ourselves and we walked out by ourselves). The second shift who would start coming in around 8 brought a few patients who had to be brought in on a stretcher. Most of them looked healthy enough, but clearly they had some significant health issues that prevented them from walking by themselves.
Now, after 1pm, probably half of the chairs are filled with ventilator patients. And I hate to say it, but some of these people look like they’re on death’s doorstep. Some of them have what looks like some kind of facial paralysis – with cheeks and sides of their mouths drooping down. Some of them drool constantly and need to be cleaned out by a dedicated nurse every hour or so. They get wheeled in, then the two (or sometimes three) EMT’s who wheel them in have to transfer them from the stretcher to the dialysis chair. They’re always wrapped in blankets (it’s always cold in the dialysis room – although it doesn’t feel as cold at 1:30 pm as it does at 5 am). And then the patient gets plugged in to the dialysis machine. Some of them have perma-caths like me, others have fistulas in arms and sometimes legs. They usually have a dedicated nurse (who does not work at the center) who sits next to them during the 3 or 4 hours they’re here. They sometimes get leg massages, or arm massages, or they have excess fluids drained from various areas.
I’m not trying to be mean here, nor do I wish ill-will towards anyone in the center, but frequently I look at some of these people and wonder how they’re not dead. Because sometimes when they get wheeled in, they look like they’ve already got one foot in the grave. Makes me wonder what keeps them going? Do they know how bad they look? Do they feel as bad inside as they look outside? What is it that ails them? And what brings them into dialysis?
A lot of people in the center wonder how someone as young as me has a problem that brought me here. Most assume I have diabetes or some kind of cardiovascular disease. Several people have been shocked to find out I have a kidney disease (which some of them have never heard of) that totally ravaged my kidneys. I get the “you’re way to young to be on dialysis” comment more often than I need to hear. I always think if it was truly a choice for me, I would not have made the one where I need to be plugged into machine for 3 hours 3 times a week.
So what happened to these other people? Do they have kidney diseases also? Or is it something else? Something worse? Most of them don’t look like they can speak at all – they come in in a sort of comatose state, eyes barely open and mouths hanging open. I feel sympathy for them. Maybe I shouldn’t, but I do. It really makes me stand out in the room though – I’m a healthy-looking young man who’s walking and talking and joking with the staff. And next to me are people who may never be able to stand up on their own again, or even possibly breathe without a machine.
I’m trying to stay positive throughout this whole process. Most days I think I’m doing pretty okay. Part of the positive attitude is realizing that there are worse things. Worse diseases, worse ways to live. Aside from the dialysis (and the hell of my disability claim, which still hasn’t been approved – more on that later), my life is going pretty well. I can walk, I can talk, I can still see and hear, I can still taste and smell the world around me. I’m still able to look around and appreciate all the wonderful things in my life – my wife, our kids, our house, the love we share, the smiles and kindness of strangers that I see every day. Sometimes it really comes down to the small things. When I keep that thought in my mind, I know I’ll make it through all this with flying colors.