In the thread about Fresenius in-center nocturnal, Bill mentioned someone who went on a vacation and consequently on 3 x week vs nocturnal, and died from potassium overdose by not adjusting diet accordingly.
Someone correct me if I am wrong, but my understanding about potassium is that the advantages for us are the fact that our dialysis is daily, not so much whether it’s short or nocturnal. I’ve been told that potassium goes down fairly quickly after starting the treatment, and unless the person has already ingested high potassium foods which won’t be digested and gone into the bloodstream until about the end of the treatment, potassium will end up going down close to the K concentration in the dialysate, no matter whether it’s a short daily or a long nocturnal treatment.
If I’m right, this would mean that as daily hemo patients, we can eat more potassium simply because we dialyze every day. In other words, we can stuff what for conventional hemo would be 2 or 3 days worth of potassium into just one day’s diet - which for all intents and purposes, becomes no restriction at all unless your diet were to consist only of unusually high potassium foods.
This would also mean, I imagine, that if a person does nocturnal hemo 3 times per week in-centre, this will not provide the same dietary advantages as doing it daily, except perhaps in terms of being able to eat more phosphorus. Unlike potassium, phosphorus removal is greatly enhanced the longer the treatment.
As I said, I stand to be corrected, but this is my understanding. Now, I don’t know this for sure, but since most of the potassium in our body is not in serum, it’s possible that the longer nocturnal treatments get more out overall - but I don’t know this for a fact.
I think there’s a BIG impact between daily-short/Nocturnal Vs 3x In-Center and adjustments between both modalities is not the same! I came from many years dialyzing in-center and had quite a while to adjust to daily…getting the habit of eating more and drinking more that was something that was habitually restricted and avoided when I did 3x a week, so it’s a fact, switching back and forth like that is risky, not easy…you adjust to a better lifestyle to go back to an old riskier lifestyle? No way! Too risky…
I agree. It just seems to me that going on a vacation and having to dialyze at a centre 3 times a week while there wouldn’t be much of a vacation. Under those conditions, I would rather just stay home and do something nice there. And choosing 3 times/week nocturnal as a dialysis method seems to me like a lot of trouble (sleeping at a dialysis centre) for not that much return.
I think all of us who do daily hemo are extremely privileged, no matter what machine we use. It’s a gift, and I’m so thankful that our government provides it.
Hi Bill and Pierre,
We have traveled and done the in-center 3 times a week after being on nocturnal all the time. It is difficult but sometimes we just need to get away. Ralph goes back to the in-center diet and on the Renegel. Yes it does take some time out of vacation but it is worth it.
I am a firm believer that if you want to do something bad enough you find a way. Besides when we go in center I insist that I do his needles because of the button holes. The in-center places are in total awe and I become the trainer! They have a ton of question about the nocturnal and the button holes. Usually while he is at the center I am at the library printing info on the button holes. On the days off of in center this gives me the much needed rest.
Ralph knows that it is more dificult for him while on vacation but he also knowes that it is my much needed down time.
Pat
All I’m saying is that it seems like one heck of downer to go on vacation and suddenly have to be on a dialysis diet again. I guess I’ve always associated vacations with good eating
I sure wouldn’t discourage anyone from going though!
Well Pierre, that is why I am wrangling for a NxStage, that way I can travel and still do daily dialysis.
For me, in center on vacation just doesn’t work. I am a single mum with an 11 year old son. We like to vacation, we like to visit friends and family, but what is he to do while I dialyze in center?? I don’t want to leave him to wander on his own in a strange area, nor is it his idea of fun to spend 5 hours in a hotel room, so… Here I am hoping I can use the NxStage and travel with it often!!
Exactly, that’s one of the reasons dialysis machine companies need to minturize their home dialysis machines so that we can take it anywhere we wish without going back in-center…
The other day I had a dream, it was a wrist-band dialysis machine that operates 7/24 on 5 year batteries…it can be used as nocturnal every night using the same buttonhole access we have… the dialyzer is so small, just about 6 sugar cubes…and best of all, doesn’t require dialysate! Nor you need to use heparin…
Who wants to be on the list to be one of the first patients using this? 8)
Hey Gus, that dream you had sounds great, I want one! Or maybe you just need to get out more, when you start heving dreams like that…
Pierre, I only do 3 nocturnals a week and 1 shorter run per week and so far my potassium and phosphates are in normal range. I eat a healthy diet with what I want, lots of fruit, veg and whatever else that comes my way.
If and when my tests don’t look so good I will increase my days but the thought of the odd escape somewhere to me would definitely be worth diet and fluid restrictions in the future.
I would go for a machine like that, Gus. Certainly, truly portable rather than transportable, able to do both nocturnal and shorter treatments, without any connections to anything for water or electricity, and no huge dialysate bags…that would be the ticket. I could see myself using a little machine that could move with me while running a treatment, either slung on the shoulder with a strap, or maybe on a little cart like an oxygen tank, and in time, even better, something that can be worn on a waist belt or something.
I’ve never really been able to stand being tied down while on treatment, no matter whether was a 3-1/2 hour tx in centre, a short daily or a nocturnal. Give me some freedom to move, and I’m all for it!
