Hemohelper,
I will re-read Apendix A first chance I get. I did get the system settings from my nurse thanks to your advice, but she has been too busy to train me on how to set them. So, will get to that next. It seems that another alternative, until I get trained, is having NxStage technical or training nurse walk me through the set up on the phone, should I ever need this done, since I’ve got the #'s now.
Did you mean that when you were on the FR doing nocturnal txs, you used a UF profile? I had heard profiles were not necessary for nocturnal txs as the blood pump is running so slowly allowing fluid to be released from the tissues into the bloodstream.
I am amazed at how incredible I feel doing SDD on the NxStage. After about 30-40 min the intial fluid is removed and I feel like the fluid build-up/pressure is off of me. And then I can feel stages of more fluid removal feeling better with each stage. By the time the tx is over, I feel like a new person. This is the total opposite of the way I felt with in-center txs. BUT, in one unit I was in, the machine peramiters/solutions gave me decently good txs, although not as great as I feel with SDD. So, my conclusion is, machine peramiters/solutions as well as time/frequency make a big difference in how the tx is tolerated. I believe there could be ways to make SDD and SND even more efficient/comfortable.
See what you mean about the FF setting.
Regarding gaining weight, I’ve gained about 5 pounds since doing SDD txs. It is wonderful to be able to more freely eat more of the phos and K foods and is only natural to gain some weight after being so severely restricted, previously. I am somewhat surprised to see the weight gain, however, as I still do not eat anywhere near what I consumed pre-dialysis. I can only eat 2 full meals and some fruit inbetween. I never eat lunch, because if I do, it completely knocks my appetite out for supper. And I also have some kind of problem, that as soon as I eat supper, I feel very full ( sort of like someone feels when they are stuffed from Thanksgiving dinner, although I just eat a moderate supper) and do not feel well for a short time until I do my tx and get dialyzed again.
When I was pre-dialysis eating was so different. I often had a milkshake or smoothie drink when I felt like it… Or if I was in the mood for melon, I would eat a whole half of cantelope or a large amount of watermelon at a sitting…until I was full. Never again ate like that since being on dialysis, even on SDD, yet gain weight now.
I think part of it is aging, less active due to bone issues, so much time spent searching for answers for improved dialysis txs… But I am about to embark upon a whole new eating and exercise regime. I think one reaches a point where the metabolsim changes and healthy habits are essential. We can eat more of the previously forbidden foods now, but that is not a license to go hog wild. I feel full after I eat a meal, but feel hungry inbetween and wish I could eat lunch like everyone else. I am just very glad to be able to eat more of the things I like and hear it gets even better with nocturnal txs. But low fat eating and exersise must become a way of life for me now.
I’ve lost a lot of time due to all the effort I must put into improving my txs. I never got very good education from my unit and have had to do all the leg work myself. Each time I nail down an area, I feel that much more free and able to concentrate on healthy eating and exercise.