Ugh, a bad day at Black Rock yesterday. A very bad day indeed. As the nurses told me over and over again, and as I well know, it is all my fault. I drink way too much, 3 4 liters a day, and this is what is going to happen when I do. I spent over an hour in the chair after they took me off the machine because my BP is so low, and I get cramps and I got pretty sick.This was the worst day since I started dialysis. Generally speaking, I have good days and bad days. Sometimes I go in there and have not drank so much, but I was feeling sorry for myself, and that is what happens.I try to stay positive and do what they say, but sometimes it just does not happen.Sorry about the negativity, it has been a very rough year. Thank you all for being here. Take care, Randy in Clearwater, FL
The first thing that was a reality check for me was Jamie (a former member)
having nothing better to offer us as a treatment after 60 years than a dialysis machine which forces us to endure the perpetual torture of thirst. Would you rather be dying of thirst all your life or be dead? If you'd rather be dead, then the 'treatment' offered to keep you from dying is an utter failure.
Would you rather be dying of thirst all your life or be dead? If you'd rather be dead, then the 'treatment' offered to keep you from dying is an utter failure.
But when he died mind you it was NOT in dialysis. He fell and the fall disloged a bloodclot from his knee that went to his head
Controlling sodium intake is a major key to controlling thirst --both as a function of dialysis and of food intake. Too many patients are being dialyzed at sodium levels higher than necessary, which leaves them thirsty as soon as they finish their day's treatment. And if the patient eats "out" all the time, whether its Fish n' Chips or a Big Mac or a Taco, controlling sodium will be nearly impossible to do. Would you rather be dying of thirst all your life or be dead? The question should be, "What are you willing to do to control your sodium, so you are less thirsty?
Oh crap yes. I knew him personally. He used to love to go out on weekends with his friends and would come in with over 7kg to take off. He was the reality check for me as well. He wouldn't just pass out. His HEART would STOP! A real wake up .. After that I never drink as much as I used to. But when he died mind you it was NOT in dialysis. He fell and the fall disloged a bloodclot from his knee that went to his head
Everyone has to have their own definition of living. I feel like crap 3 days a week (which us 43% of the time) the other 57% of the time I just live life.
...The plain and simple fact of the matter is that dialysis, as a therapy, makes unreasonable demands on the capacities of a human being to tolerate unsatisfied stimuli.
More frequent dialysis is simply not available in many countries, and 3 times a week is the standard frequence in first-world countries. Also, there is a trade-off, since if you want to have less trouble with fluids by having more frequent dialysis, then you have to accept the burden of more medicalization of your life with additional time on dialysis.