Yes, I am actually making a list of things I will miss about dialysis!!!
It seems unbelievable but when forced to incorporate something like dialysis, into your life, you make peace with it at some level.
I won’t miss any of these thing enough to turn down a new kidney but I thought I’d still mention them. 🙂
1. The noise the dialysis machine makes.
It’s hard to describe but it’s almost an organic noise – a combination of noises really.
There is the sound of fluid going through the machine itself. There are sounds of the soft tubing in the blood pump . . . and other noises I’m not sure about. All combined it creates this white noise harmony that I’ve grown to like. I would compare it to the noises a baby might hear in the womb; heart beat mixed with bowel sounds, mixed with things moving around. Somehow it’s relaxing and peaceful and I like it.
2. Productive little pockets of time.
When I get on the machine I always try to schedule some tasks to complete in the session. (I usually have four hours at my disposal.)
I write blog posts – as I’m doing now.
I respond to emails or do work related tasks.
I research things.
I wrote my Christmas cards on the machine this year.
Dialysis time tends to be productive time. When I started on this hemodialysis schedule I decided that if it required “job-like” hours of me I would take advantage of this and be “job-like” productive with the time. I get a lot of work done on the dialysis machine.
3. I will miss the organization of my never-diminishing stash of dialysis supplies.
(This is a weird one – part of my “type A” personality no doubt.) I actually enjoy organizing my supplies when I get them each month from Baxter, Fresenius and my hospital. Everything has a place and I derive some weird satisfaction from that.
Luckily I have other areas of my life that need organizing and not doing dialysis will give me extra time to concentrate on those things. (Like getting my linen closet sorted out of absolute chaos).
4. The sense of accomplishment and pride in doing dialysis.
Getting a session completed is always satisfying – but especially so because I am doing something so good for myself.
There is also an amazing sense of relief once I’m done because I can relax until my next session and pretend I’m a “normal” person. On my days off (usually two days a week) I try to put dialysis completely out of my mind. My goal is to think about dialysis when I have to think about dialysis and completely let it go when I don’t have to think about it.
As far as my sense of pride. Learning to use the machine, how to manage my own care, how to trouble-shoot both my body (and the machine) . . . learning how to manage all the variables related to dialysis was hard. It took a lot of time to learn dialysis and to become comfortable and confident.
I am very proud that I am able to do this. I don’t take it for granted either. I have a lot of freedom, despite my disease, because I am capable and organized enough to manage this. That is something to be very thankful for.
My mom was a nurse so a part of me also thinks it’s special that I get to share this aspect of my life with her. I could never be a nurse myself – I am too squeamish and nervous about things – but in managing my health I can be a nurse to myself. I think my Mom is very proud of me. I am proud of me.
5. The “me” time aspect of dialysis.
No matter how busy I am. No matter what I aim to accomplish with my time . . . I MUST GET ON THE MACHINE AND DO MY DIALYSIS.
I have 20 hours a week where I must put myself first.
I know people who don’t have an hour a week where they feel they can put themselves first!
There is something powerful about this. It’s a reminder of my importance and of my place within my sense of priority.
I don’t love dialysis (in itself) but I’ve made some semblance of peace with it. If I look at it as a lesson of sorts I can (and should) find something positive in it.
A part of me has to love it because it’s the only reason I’m alive. Maybe I don’t love it but I am certainly appreciative of having this option. (I want to be mindful of not disrespecting something that’s given me years of life (so far 9 years cumulatively) and will tie me over until my next transplant.)
Respectfully . . . I’ll be glad to see the hospital employees come and wheel it out of here . . . but still.