Adjusting to life on dialysis has been a challenge to say the very least. At the beginning, when I begrudgingly began treatment, I found the schedule harrowing and highly inconvenient. Commute time, prep time, getting on the needles and setting up the machine, 4 hours in the chair (which is surprisingly long and uncomfortable to stay still for that amount of time), coming off the needles with the accompanying pain and bleeding and then being evaluated as fit to leave…it’s at least 5 hours per day. It’s almost a part time job when you add it up and a big chunk of my day 3 days a week. But I got used to it. The problem I found was that I, not unlike every other patient, was washed out and tired rendering me essentially useless for the rest of those days.
It’s been a year and a half now and not much has changed. There has been some progress on some fronts. I have a potential donor, which I normally don’t get excited about because every person to date that has offered didn’t take the next step when asked. The next step is calling my team and inquiring about the process. Nobody to date has done it but him.
He was told to lose 30 lbs when he called and I found that to be unacceptable. What if I was dying? Would they put me on life support until he lost the weight? At that point I wrote him off, only to have him text me that he was down 12 with 18 to go. That is a glimmer of hope and I will leave it at that.
I’m officially on the transplant list. Finally. I received a Pager in the mail on Friday that I am to wear in the event that a matching kidney becomes available. The wait time is 3-5 years with a credit for time on dialysis so I’m basically halfway to it, the only obstacle is that I have a bunch of antibodies that I picked up in a transfusion when I almost bought the dirt farm last year. This series of good events has inspired me to step up my fitness. Although I am in decent shape, according to my dialysis nurses I’m a fine specimen by their standards, I really want to go into this in the best shape possible. So despite my frequent walks, calisthenics and overall attention to my diet, I have begun an actual workout routine. To solidify my commitment I joined a fitness center.
In my area of NH there are no Planet Fitness or Work out Worlds. I would have joined one a long time ago. I discovered this place quite by accident. My mother started doing Physical Therapy for a leg injury and she told me about the place. As it turns out, a place that I have been driving by for years is not just for PT but is an actual fully equipped Gym complete with every machine you need, free weights and a crossfit room with my favorite accessory…the heavy bag.
I joined immediately.
The challenge is how many times a week I can go. I’ve gone on a few dialysis days and I always go on the off days. Essentially, I go when I feel up to it. I have been really working hard and it seems to be paying off. In addition to feeling stronger, many people have told me that my physique has changed a bit. That my chest is prominent, my shoulders pop through my shirt, my gut is smaller, my arms look bigger. All that is fine and good but the bigger picture is that I am doing something that seemed unrealistic and unattainable.
But I’m doing it. All of the people that have told me what my limitations are or should be are eating their words. They can’t define what I can and can’t do. They are simply not me and they need to understand that.
I have good days and I have bad days. Lately the bad days have been more frequent and I find myself at home feeling like a giant shit burger and I get mad at myself. I then remind myself of what my real limitations are, that I am doing the best I can, that I am not just accepting my lot but instead fighting it. But the realities are there, the other voice tells me that it’s ok to not feel great all the time. It happens. Still, I continue to feel that I am not the typical dialysis patient and that I need to push myself. On those occasions I get down on the floor and do pushups or I go to the club and I move as much weight as my body, on that allotted day, will allow.
3 years ago when my kidney failed I thought that it was something that I could work through and I foolishly joined a gym. With bloated legs (water retention was brutal), a very overweight and out of shape body and very little stamina I worked out to the best of my ability 4 times. The results were not good. I was weak, washed out, bloated, sicker than I wanted to acknowledge. On my last exercise of my 4th workout I was on the weight bench. On the bar I had a weight that I used to warm up with. Not much at all. I got pinned under it. I actually had to have a good Samaritan pick it up off my chest. Embarrassed, I immediately left and never went back. That feeling stuck with me.
Today, I tried the same weight on the bench press that buried me. To my amazement, I benched it 10 times.
Today was a good day.
Life happens fast and we are all dealt a hand that we must either fold or play. I’m playing mine. It’s the results accomplished on a good day that are going to carry me through those days when I’m mad at myself for not being able to climb a set of stairs without needing to sit down. Those are the bad days.
We all set goals. I have adjusted mine to simply work my ass off to ensure that, until my miracle happens, I have more good days than bad.
Life’s a Garden baby. Dig it.