Day to Day life with Dialysis

What does dialysis do to your life?

I can answer what it does to OUR lives, but it won't be the same for everyone.

In Center - We did this for a few months while we were waiting for his catheter to be ready for home PD (Peritoneal). It happens three times a week, and your times are very much set in stone. So, for us, three times a week, we drove 50 miles to the center, and John spent 4ish hours connected. Sometimes, it took awhile for them to get him hooked up, or taken off, so it often took longer. Because we lived so far from the center, I stayed in town, and did things like walking the track, shopping, reading, etc while I killed the time.

After in center dialysis, John was always very worn out and tired, so the rest of the day was pretty much shot for him.

In Center, there are usually 11ish other people dialyzing in the same room, it can be noisy and hectic. I also think it's awful for morale, because you tend to see the sickest patients coming in here. On gurneys, stretchers, wheelchairs. I have to think it makes the 'healthier' patients feel as if they are glimpsing their future. Some people talk about poor treatment in their facility, but John never really had an issue with that.

Traveling is difficult because you either have to structure your trips around dialysis days, or set up with a center in whatever area you are traveling to. We chose NOT to do that while on In Center.

Peritoneal - The method we've used for a year, and are just now preparing to switch from. I'll start with the catheter hanging from your belly. You have to figure out the best way to keep that secure, because it dangles freely. Maybe a foot of it. If it were to get pulled on really hard, or stuck in something, you could potentially pull it out of your body, and that would require another surgery to correct.

Then, the supplies. The photo below is not -our- supplies, because I can't find the one I took, but there are a LOT of supplies. Boxes of dialysate (the bulk of the supplies), boxes of caps, cartridges, drain bags, patient extenders, drain line extenders, etc.

You order once a month, and once a month, Baxter delivers your stuff. We had a fantastic delivery guy, he brought everything in, rotated all our stock, made sure all was as it should be, and was also just generally a friendly and nice guy. :)

We chose to use a Cycler, which is a machine you hook up your fluids too, and yourself, and it does your drains and fills overnight, while you sleep. That meant I was carrying two 6L bags, a 3L bag, and a 2.5L bag each night into our bedroom to set up the machine. Then, there are the drain fluids to think about. We had two five gallon buckets sitting in our room, and my drain lines fed into those, because you drain a LOT of fluid each night. So each morning, I'd lug the buckets to the bathroom to dump and clean them. My father helped me install a drain line into my bedroom floor, and it ran down into my basement and emptied directly into a floor drain. THAT was a banner moment for me. :) I was over the moon to not be carrying the damn buckets. 

Traveling with the cycler was always interesting. The beautiful part of home dialysis is you CAN travel. Recently, we went on our first cruise with our Baxter Cycler, and I'll try to give you a glimpse of the supplies that had to travel with us. JUST dialysis stuff, not clothing and the like. 

Those are just the boxes of fluids. :) I also took a small carry on sized piece of luggage full of ancillary stuff, and two more boxes of things like cartridges and such, plus the cycler itself.  It's important to travel with a few extra things, because if you drop and contaminate something, or just have a malfunction of some sort, it's not easy to replace. You can't even just go to your local hospital and get it. So, I prepare by taking extra of everything.

Home Hemo - I'll have to post more here later, since we haven't actually come home with it yet. :)

For most dialysis patients, one of the toughest restrictions when your kidneys have failed is fluids. John is allowed 64 oz of fluid daily, and fluid is ANYTHING that would liquefy at room temperature. Some fruits like watermelon, pineapple, etc can mess with your fluids as well. Most kidney patients who get transplanted struggle to drink as much water as the transplant team directs them too because they've been sipping for years. :)

And that's a brief glimpse of what it's like to do dialysis in center, and at home.