The new normal



Chair one is empty today.

An empty chair is the car wreck of the room. You don’t want to look at it but as you pass by, you have to. Sick? Vacation? Or did they…get that out of your head, don’t think the worse.

Chair 3 is in the private room, a walled oasis in a open desert. I’ve never been in chair 3, I’m too well-behaved. The “problem” patients seem to go in there, the ones that hassle the nurses and complain a lot. Dan the Veteran is usually in there, he hassles the staff like an old man at the early bird special. I like Dan, mostly I respect him for his military service. You know, the service that gave him the need for a heart and a kidney transplant and then denied him his VA benefits. The last time I saw Dan I asked him how we was, and he told me. After 5 minutes of him complaining, I not-so-politely reminded him that we are all at the clinic for the same reasons, maybe he could try to be a little more pleasant? It’s not that he’s not sick or that I don’t empathize, but he’s preaching to the choir. Did I hurt his feelings?
He’s not here today, and I feel bad.

Chair 4 is also empty, it is usually reserved for a new patient, a transient or someone who missed a session due to illness or weather.

Chair 5 is today’s home for Terry. I don’t know much about Terry. He’s a quiet guy, in his 60’s. He nods his hello’s and goodbyes. His knit Harley-Davidson hat and multiple tattoos suggest that he was a pretty fun guy before he got sick. He seems simple and direct, I earned his respect the first day he made his way by with his walker, when I moved my protruding feet to make room. His nod of thank you told me all I needed to know.

Chair 6 is today’s home for Kim. Kim plays with her phone and sleeps. She doesn’t say much, but she monitors the banter of the room and will occasionally smile warmly. Kim doesn’t have teeth, I think that’s why she doesn’t say much or smile often. She clearly doesn’t feel well, even after dialysis. She walks the same painful, slow walk on the way out as she does on the way in.

Chair 7 is today’s home for Jack. Jack sits upright, vomit bag in lap because of his chronic nausea, staring straight ahead through dark glasses the entire session. He says little and smiles less. It took me a while to realize that he is legally blind because he walks out unattended. He’s a big dude, I wouldn’t want to have messed with him in his prime. I wonder how he is handling his new life.

Chair 8 is empty. Lisa has been missing a lot of appointments. She has not been a patient for long. She is not handling it well, she has experienced almost every complication one of us can. I hope she starts tolerating it soon. She’s quiet, I really don’t know anything about her.

Chair 9 is today’s home for Kurt. I don’t know for how long, but he’s been doing this a long time. A small man with a great head of hair, he makes his way in with his walker and oxygen tank, armed with enough gear to survive an ice age. He always says hi to me, occasionally we sit next to each other and talk, between his frequent naps. He used to be a big man in business, now he lives for his next treatment. I like Kurt.

Chair 10 is home to John. At 81, he is a vibrant guy. Witty, always smiling and messing with the Nurses. He passes the session with a stack of newspapers in his lap, occasionally glancing at the TV. He is quick with a smile and a joke. Not eligible for a transplant, he is fine with his routine for now.

Me, I’m in chair 2. I’m uncomfortable. I’m itchy. My arm hurts from the needles. I don’t much care for this spot, the glare from the window makes it hard to see the TV. The Nurses station partially blocks my view of the room, which dampers my people watching. I read and I watch mind-numbing TV, I try to blog. I talk to the nurses to pass the time. The nurses love me. I never rush or hassle them. I am never rude. I don’t complain. They wish the others were more like me. They hate that I have to be there, but they are glad that I am.

When I’m not wondering what is going through the minds of the others in the room, I evaluate how I’m doing. The doctor’s tell me that I’m doing great. That’s the physical part. I know that. I focus on how I’m handling dialysis emotionally. I think I’m ok. I try to be active on days I feel well. I try not to be discouraged on days that I don’t. I’m getting used to it.

It’s all about the routine, after all.

Arrive and wait in the waiting room to be called in.
Make small talk with the others.
Get called in.
Report to the scale to weigh in.
Any nausea, vomiting, dizziness, change of appetite? Me, I always say no.
Go to your assigned seats and do a standing Blood Pressure.
Sit and wait for the 2 sticks from the one-inch needles that would make Dracula himself wince.
Wait for the pain to subside as the Nurse programs the machine.
We make small talk until it is time to settle in, our feet up, laptops or tablets at the ready, our headphones plugged in.
We try to nap, try to read, try to watch boring daytime TV, anything to kill 4 excruciating hours of sitting perfectly still.
When the welcome sound of the end timer goes off, the blankets come off, the needles come out, we apply pressure to the needle sight to stop the bleeding and we wait for the dizziness to subside.
We then dutifully wait our turn at the scale and announce our new weight, which is hopefully significantly lower now, and trudge out the door.
We’ll be back in a day in a half.

This is my new life, my new normal. I can live with it for now. I really don’t have a choice. Planning, scheduling, hoping to make the most of the good days. I hope to be on a transplant list soon and be in recovery by Summer.

In the interim I will continue to be the guy the Nurses look forward to seeing. The guy that other patients laugh with (or at). The guy that has become part of a community, one that has altered his outlook on what really matters in life in a wonderful, if not a routine way.

26 thoughts on “The new normal”

  1. I read this post twice. Your eloquent writing allowed me to ‘put myself in the shoes of a dialysis patient’. I have never known anyone who has experienced the rigid schedule it demands, body & soul.
    Thanks for a peek into “your world” tues, thurs & sat. Thoughts of you today actually…. knowing it was treatment day & how nice it was to break bread last wknd.

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  2. It would be interesting to compare needle size. I believe one is the “normal” size but the other is the one I call a sewing needle. What I hope for the most when I sit in my apheresis chair is that they will get both of them in the first time without any problems, or the need to pull them out, through them away, and try again with two more.

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  6. I say this sincerely – well done! I felt like I was there in that room. My friend Joellen used to go to her chemo sessions with a big red clown’s nose on and a funny hat. But my friend Carol is like Dan. I often pity her doctors.

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  7. Gosh, I felt like I was right there in the dialysis room with you. That’s great writing when you can pull that off. You gave me chills too and while reading this, a tear slipped right down my cheek. My brother-in-law was on dialysis for many, many years but he never talked about it much. I was always sorta curious but didn’t ask too many questions. He was a very private person and I tried to respect that. I do remember my sister telling me that the dialysis nurses were like family to him. They came to his memorial service last year and that right there spoke volumes to me. They too loved him like family. I guess you could say he was the “class clown” of the dialysis room and I know he is missed. I think I’ve said it before Billy, but you are a really, really good writer.

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    1. Thank you Gail. As I told Bojana, I didn’t feel good about this post (content and subject yes but writing quality no) so I’m surprised at yours and her praise.
      I’m mostly glad that I was able to shed some light on what your brother-in-law went through. It’s a very unique place. It can be sad but it can also be a wellspring of inspiration and hope.
      again, thank you

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      1. I can see that completely, how it can be sad, yet there is inspiration and hope there. I am very ignorant about dialysis so I was thankful for a peek into your dialysis experience. As I was reading your post, I thought about how it sounded a lot like the chemo room my mother was in when she had her cancer treatments. They allowed one family member in the chemo room with her and it was much like you described. Week, after week, I saw the same people in the same chairs and learned a little about their journeys. I would often take a book to read but I rarely even opened the book as I would end up getting snacks or blankets for the patients, or just talking to them. The nurses joked and told me they were going to get me a paying job there. I just wanted to feel useful.

        I have wondered from some of your other posts about the insomnia you have mentioned. Is insomnia a common side effect of dialysis?

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      3. I guess the medical person in me would love to know the pathophysiology behind what it is about dialysis that causes the insomnia. I’m glad you slept good and hope that will continue! Insomnia sucks.

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