Due to my recent travels, I have only gone for dialysis two out of the last ten days.
And I feel okay.
I am livid that, after fourteen months, the doctors and staff have not gotten the message that I do not need to have any fluid removed.
I am livid that it doesn’t seem the suffering I experience on dialysis is necessary. I’m not saying that I don’t need to be on dialysis. But I clearly haven’t needed 10-1/2 hours every week (and 24 hours of nocturnal dialysis before that.)
The treatment almost always gives me flu-like symptoms for several hours following treatment, not to mention for one to hours of severe symptoms during the treatment itself.
The treatment is worse than the illness.
And then there’s the staff that couldn’t manage a McDonald’s. They are constantly screwing up the scheduling, giving me a hard time when I come on time and rambling on to me how management has made mistake with their schedule. I’ve recently found that the required visit from a nurse hasn’t happened. It’s hard to get anyone’s attention when something is going wrong.
I don’t trust the people working the floor or running the facility. This has been the case at both facilities.
I don’t trust the doctors who have zero to little interest in the day-to-day operations of the clinics.
I’m sure they do whatever they have to do to keep their certifications. They may not have flat-out killed anyone lately. But everytime I go in there, I do feel like my life is at risk. One mental lapse, and who knows what disasters can occur.
Doctors and dialysis staff suggest, “Have you tried home hemo?”
No, I live by myself, and that’s not about to change
“What about peritoneal?”
I though about it, but how “active” can you really be with a straw sticking out a few inches above your groin?
“Oh, and you have pets anyway…”
Yes, me keeping things sterile would be…well, I’d get an infection every other week.
All evidence suggests that most hemo-dialysis centers sucks. There is no relief.
I’ve found some relief in NOT GOING. But this is not a long-term strategy.
There’s got to be a way to get a technician to come to you to start and stop dialysis so you can do home treatment.
http://www.ultracare-dialysis.com/engine/renderpage.asp?pid=s0814
These folks are one city over, but have four locations in town.
Thanks, ACW. I had heard that insurance companies in *some* states offered this, but I’ll be surprised if it’s offered here. When the clinic profile says “home dialysis”, it usually just means they support you having it and will train you and a partner. It would be terrific if UltraCare was available here (and was something insurance would cover). I will look into it. Ironically, I saw that Austin has an UltraCare facility. I just visited Austin; would love to live there. But I’m not moving somewhere for the dialysis.
I’m stunned that some places don’t even offer “tranplant support” meaning they won’t even help you get set up with a hospital to get on a list. (If you get a transplant, they stop making money).
It’s not just for setting things up, starting the home hemo process and then finishing the process that a partner is needed. Someone must be there all the time in case you pass out, have infiltration or bleed. At the least, there would be someone to call 911.
If I pass out at Davita, it could be a half-hour before anyone notices. I was lucky to have had one of the few techs who cares back on Friday. I seriously may move to 1st shift (6:30AM) just so I can have this tech more often. Otherwise, it’s a crap-shoot.