A big part of my cancer fight has been dealing with its impact on my kidneys. During my initial hospital stay, a kidney biopsy showed that while I had greatly reduced kidney functionality, there was no scarring. This and the fact that I’m still making lots of urine leaves the hope that we can get them to recover once we address the cancer.
So to keep this going in the meantime, I had a perm-cath installed (a catheter that feeds directly to the jugular vein, I believe) so that I could start dialysis treatment right away. Another procedure to myth-bust, right? Is there an actual crazy looking machine to get hooked up to? Well.. umm… yeah, actually. This one lives up to the perception you might cook up.
With dialysis, you are connected to this machine. Blood goes from you to the machine, which filters toxins from your bloodstream that your kidneys would normally take care of, and then send your blood back to you. It’s a constant cycle, and you have to do this typically 3 days a week for about 4 hours each day. I can honestly say that this has been the most burdensome part of the whole experience.
You’d think that you’d feel better after having your bloodstream cleaned up in a 4 hour session? NOPE. You actually feel tired and worn out. Forget about trying to do significant physical activity afterward. It’s a known thing, unfortunately. Also, it’s incredibly time consuming. You’re taking a huge portion of your day sitting on a machine. While most patients are older and it’s not as impactful to their day-to-day lives, for those that are younger and/or more active, it’s quite a hard hit to the lifestyle.
For those that have to do it long term, there are at-home options that have some pros and cons. The pros are largely the convenience factor. You can do it in the convenience of your own home, and at times more suitable for you. Some even do it overnight to keep their daylight hours available to do as they need. Doing dialysis at home also lets you do it more often for shorter sessions.. This means more toxins being cleaned up, less port-dialysis drag, and overall feeling better.
The cons are… well.. the inconveniences. Not everyone likes needles, and the idea for some of them poking themselves with needles for treatments is a big NOP{E. I’ve talked to the staff about this, and they’ve descriptor the process as being much easier than most things. It’s something that’s taught over several weeks, and the access point builds a sort of scar that allows you to do your poke straight down into that spot and be done with it… meaning, no aligning needles or searching around needed. You also need to keep in mind that you’ll have a machine to keep up with (albeit MUCH smaller and simpler than what they use in the clinics). You’ll also need to store and keep up with all of the accessories needed to do this at home. Lots of boxes, keeping inventory, and keeping a clean space to do your treatments.
There are other options as well such as PD dialysis which uses the lining of your stomach to filter toxins. It’s a process that involves having a catheter from your belly and can be hit or miss in the time needed to do it. It can also be VERY manual at times, adding and draining fluid from your abdomen. Meh, I think I’ll pass on that.
The other side of dealing with kidney health is nutrition. Being on a renal diet is VERY restrictive. Fortunately, since I’m still producing lots of urine, I’m not on a water restriction, so I only have to deal with the eating portions of a renal diet, which involves limiting the amount of potassium and phosphates that I can take in. The biggest parts of this for me is not having potatoes, bananas, tomatoes, and processed cheeses (anything freshly shredded/grated is ok). I also have to avoid processed deli meats that contain a lot of preservatives. The general rule is to stick to things that are fresh or frozen and require cutting and cooking myself.
With all of that said, we’re hoping and praying that once we kill this cancer, the kidneys will be able to clear out the light chain proteins that are clogging up the works and return most of heir normal function back. If for some reason this doesn’t happen, I’d be doing dialysis until I can get a kidney transplant. It would be 5 years the very least since most kidney transplant docs want you to be cancer-free for that long before going forward, according to my neurologist.
Here’s lo looking for the best outcome!