I am looking forward to being able to eat cheese again once I start daily txs. I like cheese, but was never previously a cheese conosieur. Now I want to try every kind of cheese in the world! How much cheese do you find you can safely consume now that you are doing daily txs?
Wow, its a nighmare…
I am a chronic and at 2.5 hours of dialysis daily my phosphorous is a little low…
am beeing able to drink full glasses of milk, full bowls of cereal with milk, and of course pizza! Basicly, what I was restricted awhile back doesn’t apply today for me…
However, I do read about some patients doing daily that they still need to take Renegel or some sort of binder…
All I take is TUMs…
Cheese, smoothies (do you call 'em that in the states?), pizzas you bet!
Jane , are you getting any closer to coming home. You certainly deserve to be there and very soon!
Thank you Gus and Beachy for the cheese reports They tell me it won’t be much longer, Beachy- thanks for the good wishes I am praying for all to go well, because unlike most others, mine is not an established program and they have a lot of loose ends to pull together. But I have the faith that we will get there :!:
On nocturnal anyway, absolutely, totally unlimited. I’m a big cheese lover, and there seems to be no way I can eat too much phosphorus. My pre-treatment bloodwork is always good. I eat a lot of cheese, chocolate, ice cream…you name it. It doesn’t seem to make any difference. No binders either. On short daily, I needed a binder, but it was reduced from 3 Tums per day to only one.
One caution though is that cheese also has a fair amount of potassium, so, depending on the individual, there might be a limitation that way - although to be honest, no matter what I eat, my K always seems to stay under 5.
Everyone’s different though.
Gus, just curious as to why you do 2.5 hours per day, why not do twice that much every second day?
My labs/vitals are excellent, for the small guy I am thats all I need. However, I do more than 2.5… about 2hours and 45min and some days for 3.5 hours.
…But if you mean why not every two days for more hours well, I was prescribed to do 6x a week for short periods, I guess its a research study. There are others doing every two days but they were prescribed that method.
For one thing, it’s not daily dialysis unless you’re doing 5 or 6 days per week. One aspect of daily hemo, whether it’s short daily or daily nocturnal is that it’s every day, and so there isn’t as much time in between treatment to build up stuff in your blood.
The whole idea of high dose dialysis is that frequency has a greater impact than length. The thinking goes: the first hour of dialysis is the best hour of dialysis; the more first hours you have during the week the better you will feel.
Thanks for clearing that up. As far as I know no one does short daily here. I do 8-10 hours 4 nights per week or every second night. And my bloods are excellent too. There is not a huge change in between treatments.
Plenty of people do short daily out here in Aussie Land. It is a matter of personal choice based on lifestyle, work etc. My Neph actually recommended it for me as he felt Nocturnal was too difficult especially to start with. But I liked the idea of slow dialysis doing the cardio system the least harm and frankly the idea of backing up to Freni everyday would have turned me into a babbling idiot! It still does my head in sometimes :?
As far as I know, no one does daily where I trained, not that I know of anyway. I couldnt do it everyday either. At the moment I am finding it hard to do 4 days a week, it just gets too much doing 2 nights in a row sometimes. Mainly because of the sleep factor. If I dont sleep well, then I do every second night.
I think it takes time to adjust the right numbers, I mean c’mon it took me about 3 months just to balance the parameters, epo,supplements, …its an art trying figure how much is needed for 4 days…
Ive got it pretty well figured out for me how much I need. Every second night is keeping my bloods ok, but I think 4 nights was even better.
Spent a few days in centre around when my last bloods were done, and the potassium was a bit higher than usual, for both pre and post.
If only we had a way to test it ourselves! I get a bit overly worried at times.
In my experience, the sleep factor on nocturnal is helped by the opposite of what most people would assume. You need more frequent dialysis rather than fewer nights. You don’t need fewer hours on treatment but rather you need more. I started out doing 6 nights per week for 6 then for 7 hours. Then I decided to try only 5 nights per week. Now I’m on for a full 8 hours 6 nights per week, and I’ve never slept better. More frequent, longer, slower… that’s the secret. That’s the closest you can get to normal kidney function on dialysis. If you’re not doing it daily, your body is on a constant roller coaster ride. I would be willing to bet that even short daily is better than non-daily nocturnal.
It’s not hard to dialyze 6 nights per week. You just get in a groove and do it. I mean, why do we complain about this setup business so much? Nurses and techs do that multiple times each work day, for pay. We, on the other hand, are doing it for ourselves, for our own health. In the philosophy of Zen, little things of daily life are enlightening experiences. “When you’re hungry, eat. When you’re tired, sleep”. I say, when you setup your dialysis treatment, just do it and make it akin to a Zen experience. Concentrate on what you are doing and do it joyfully. If you’re not a Zen monk (and I sure am not), you can still make it a joyful experience in your daily routine, just like an avid gardener derives pleasure from daily weeding
I think there is the cost factor to be considered, by the clinics I mean - I don’t care how much it costs :lol: If you do 4 x 9, for e.g., you are only using 2/3 of the consumables, compared to someone on 6 x ‘n’ hours. THe optimum for clearance & cardio-vascular outcomes would be every night for however long you can…as pointed out on another topic, your kidneys, when working properly, were doing 168 hours a week. So 55 hours over 6 or 7 nights = 1/3 kidney function. But who wants to do all night, every night??? :? It’s only on the days following no-dx nights, that I feel good. :roll:
Besides set up and tear down which some machines seem to make pretty easy, what else are you doing when you’re sleeping that you couldn’t do on dialysis or before or after going on dialysis?
I’m not a dialysis patient so I genuinely want to know…If you had to do dialysis every night (or 5-6 nights a week) including the set up/tear down but the trade off was that you could feel better every day, eat a normal diet, were hospitalized less, didn’t get as many complications of kidney disease, and could live longer and more productively, would the trade-off of an extra night or two of dialysis (while you’re sleeping) be worth it?
With me doing 4 nights a week (alternate nights at the moment), I am not experiencing that “rollercoaster” effect. My blood levels only change slightly from pre to post and post to pre dialysis. I am the same as bear, I feel better after my non Dx night. Sometimes I feel just as good after Dx, but if I havent slept well, or Ive taken off 4 litres of fluid, I feel a bit giddy afterwards.
I couldnt handle the stress of doing it more than 4 nights a week. I am in a seperate room with a horrible single bed, which kills my back. So I very much look forward to sleeping in our new cozy bed for the non dx nights. And well, I figure I have to spend some sleeping time with my other half :lol:
I dont see the point of short daily. I dont know anything about it, but I know when I even do a 4 hour run I feel like sh*t afterwards. Just say you did 2.5 hours a day, and say you were to take off 1.5 litres. That would be a UF rate of 600ml/hr. On nocturnal we are not to run at a UF any more than 400ml/hr. I myself know that the higher my UF rate, the worse I feel afterwards.
But remember, everyone is different!
I did short daily for over 3 months before going nocturnal. It’s quite different than 4 hours 3 times per week. It’s short (it was only 2 hours for me, 6 days per week)… but all of your treatment hours are those most effective first couple of hours. I’ve had a UF rate over a thousand on short daily many times without any problem. A few times I just added an extra 30 minutes to the treatment. I like nocturnal better, but short daily would be my next choice.
I’ve done all three modes of hemodialysis, conventional in-centre, short daily, nocturnal daily. I truly believe there are more advantages to it than just what is measurable in blood work. But even if short and nocturnal were equal in every other way, I would still do nocturnal for the totally free days.
It must be awesome not to have to go to the dang center anymore lol! Does it seem weird when you graduate from in-center and all your days are free?