Look, CN, I’m not the one who doesn’t read posts and can’t understand them if he tries. If I write that “it remains unused” and you can’t understand that means “the fistula is still there”, that’s a you problem.
I broke it down in as small words as I could muster. Even a complete imbecile should have been able to understand the point I was making, but I didn’t account for you. My bad. Here’s one more attempt a a recap:
Nunnehi: I don’t want a fistula because it implies a permanence to dialysis
Melk: Lots of people get fistulas and get off of dialysis. Maybe if you uncouple fistula to permanent dialysis in your mind you might see things differently.
That’s it. Try reading it a few times slowly and I think you might get it. I think you have it in you. This one isn’t that hard.
The fistula is permanent, even unused, and is something I don’t want especially based on how it looks on most people I’ve seen it on. I’ve heard every argument about getting it and am not moved. I did agree to get vein mapped and don’t get any bloodwork or blood pressure done in my left arm.
I’m also unlikely to live long enough to get a kidney transplant, as I need to be in remission for 3 years (Sep 2027). I want to be free of anything related to dialysis and a fistula most definitely isn’t that. It would be a near constant reminder of it even if I am not on it.
That’s the diagnosis. Multiple Myeloma is the disease and it affects my kidneys as its major complication. Don’t ask me why it’s referred to as singular, that’s just how every doctor has referred to it.
More than anything, I hate being a burden and have always been fiercely independent in that regard. It’s hard to get used to needing someone else to do many basic things for me most people take for granted.
It’s hard to say which side you’d want to be on until you go through it, but in a lot of ways I’m not that bad off or hard to take care of yet. If I go significantly downhill when I get toward the end, it may get way worse but I go day by day and don’t really think into the future at all anymore. I also am refusing to take any pain mitigation until pain becomes unmanageable for me to try to remain as much myself as I can for as long as possible.
The intensity of a bone marrow stem cell transplant on my caregiver was a factor in me not wanting to get one, so I very much agree about a disease often being harder on the caregiver than the sick person. Both for the reason you said about them as well as the physical, emotional, and mental toll on their lives changing radically overnight.
Yeah, I didn’t think you were going to get transplant, but upthread you seemed to mention that your kidney function might improve enough in the future to come off of dialysis, at which point the fistula just remains there but you don’t use it.
But it sounds like you don’t want it, which is fine. Sounds like you’re keeping your options open which is good. Who knows when you may change your mind.
It’s basically a line they attach to a vein in your arm via surgery to be able to tap your blood easily in dialysis. When it’s working, it engorges the vein it’s attached to causing very good blood flow, so you have this kind of grotesque vein (kind of looks like a very large varicose vein) in your arm that looks unsightly. I haven’t done in depth research, but I’m guessing where it’s put in the arm is based on how good your veins are and I don’t know where they would put it on mine. The blood flows very well in dialysis that way supposedly, but I have several reasons why I don’t want it not the least of which is how it looks.
My m-i-l’s second husband had polycystic kidney disease (all his life) and had a fistula the ten or so years I knew him. It was never a big deal for him or any of us. I guess maybe my children were curious about it for a second when they were toddlers, but I don’t really remember even that.
Take a tube. Put one end of that tube in an artery, a high pressure system. Put the other end in a vein, a low pressure system.
The difference in pressure causes the tube to have a ton of blood flow through it, which is what you need for dialysis. Dialysis works (very generally here) by taking your blood out of your body, cleaning it, and putting it back in.
