I have read how there are no diet restrictions with nocturnal txs. But I would like to know if that means no restrcitions at all. Does it mean one can consume all the healthy natural foods high in phos. and potass. or is there still some limit according to labs?
Honestly, for me, it means a totally normal diet with no restrictions at all. There’s no way I could eat too much of anything between the end of one treatment in the morning and the start of the next one in the late evening… and it’s not that I have that much residual kidney function, because I also don’t have time enough to build up any urine.
Now, to be serious, I still remain aware of potassium. I don’t limit it, but I don’t overdo it either. But I do eat French fries, pizza, tomato soup… you name it, before my labs, and so far, the highest pre-treatment K I’ve had is 5.1. I eat tons of cheese, I eat ice cream all I want, and I still have to add phosphorus to my dialysate. My pre-treatment phosphorus is always in the normal range, so, I really don’t have to worry about that one at all.
As far as fluid goes, there is no formal limit. They suggest that we don’t gain more than 2 kg though, in case we should have to miss a treatment. As with food, I find that with normal drinking (and no counting at all), it actually takes quite a bit of effort to gain that much in one single day between early morning and late evening. And even when I’ve gained 3 kg, it’s nothing to take that off over a 7 or 8 hour treatment.
I can only speak for myself, but according to the home dialysis staff, my experience is normal for daily nocturnal.
I haven’t heard of any nocturnal patients limiting their intake of certain foods. This was a contributing to factor into why we chose nocturnal. I found cooking to suit the conventional treatment a real pain. And I also felt really bad when I had to keep saying to dad …you really shouldn’t eat that. Now I just say if you want it eat it.
This is why for me, as with most people who have been on nocturnal, there’s just no going back, not even to short daily hemo. Whatever hassles there might be with being on dialysis all night (not that there are too many more), nobody would want to have to start limiting foods and fluid again. Except for having to actually do the dialysis every night but one, daily nocturnal hemo is almost as good as having a kidney transplant, and in some ways, better.
Pierre, my experiences these last few months haven’t been quite as good as yours. I only do 3 nights and 1 day 5 and 1/2hour run in a week ( tests are great and no fluid / diet restrictions yet so I’m not giving up…) but I really miss my good nights sleep, don’t feel comfortable and get cramps in my hand if I don’t move it every few hours. Am getting more sleep now buttonholes have settled but…
As for the question of transplants, yes, not taking immuno suppressants and cortisoids is definitely one plus. They did keep my disease in check for a number of years but side effects (melanoma, osteoporosis etc). However I thought I could handle this change in lifestyle with dialysis but gee it has its moments for both hubby and myself.
Starting to think transplant might be worth the wait( 5-7 years). I miss the freedom to go and do what I wanted when I wanted. (Gus will say I need Nxstage but we don’t have any of those little critters out here yet) Not ready to trust dialysing in other centres yet ( have to keep ready Bill’s posts for inspiration)
Wonder how other people feel about transplants vs dialysis. In my case, disease may occur again, which prevents me from accepting a family or friend donor as I don’t think I would cope very well if I lost that gift. So we soldier on.
I think there’s choices to make, depends what’s available in your areas…home dialysis has been quite good so far and if I’d compare it to a transplant, well, there’s still a share of problems on both options but I think restrictions are higher with transplant, but if no anti-rejection drugs are needed, then that may be a very wise decision to go for a transplant…or else you have to deal with the toxicity of the drugs just to keep the cadaver kidney…
Very simple in my book. A transplant is better than being on dialysis, no matter what type of dialysis it is. It doesn’t last forever, but whatever time we get with a working kidney is worth it. There’s no way I would willingly get off the waiting list. I’ve got 3 years under my belt, and I’m not giving that up! I look on daily nocturnal as the closest thing to a transplant while I’m waiting, and perhaps as something I might do again in the future, but a transplant is still better overall.
So, in my case, it’s not nocturnal hemo instead of transplant.
I wish I could offer a solution to your sleeping problems. That’s a real downer. I have to say though, I think it would be extremely difficult to go straight into home hemodialysis after reaching ESRD, let alone daily nocturnal hemo. I remember when I first started dialysis over 3 years ago, in-centre, my nurse that day told me that it could take 6 months before I really started feeling better. In retrospect, it did take a good 6 months before I started being comfortable and relaxing. So, I’m really not too surprised that your experience might not be as good as mine if you went straight into nocturnal hemo. I rely a lot on my previous experience in centre for confidence especially, and to know what to expect when things happen. I know this is something many will disagree with, but I think it’s better to start in centre a few weeks at least, if not a few months. There’s no substitute for the experience you gain. When I was in centre, I had needles pull out a few times, I’ve had treatments when the arterial or venous pressures were all over the place, and I’ve seen how nurses deal with those eventualities. But nevertheless, it’s all a matter of confidence, and of accepting that sleeping on dialysis is simply not going to be as easy as sleeping off dialysis. I knew that, but I wanted to try it for the dietary and other advantages. Luckily, it has worked out - after a couple of weeks of getting used to it. On the other hand, I wouldn’t be devastated if I had to do short daily instead, since that is pretty good too.
Travel for me is a non-issue. I can barely afford living where I am, let alone travel. So, I really don’t care about that at all. I know someone who was the helper for his father dialyzing at home in the 1960’s and early 1970’s. Even a Fresenius 2008K is a tiny pup compared to the home hemo setup they had back then (it virtually took up a whole room). So, I just count my blessings that I have ESRD in this era rather than when I could have had it in the past. After all, I did already have this kidney disease in the late 1970’s. Even then, no high flux dialyzers yet, so even an in-centre treatment during the day was like 8 hours!
But, listen, if you’ve given it the good ole college try and it doesn’t work out for you, then don’t keep punishing yourself forever. Just switch to short daily. It’s not quite as good as daily nocturnal, but it’s not bad, and, you can choose to do it in the morning, the afternoon or the evening. You’re not sleeping during those 2 hours, and some people are more comfortable with that. Even in my program, I’ve heard of a couple of people who couldn’t get a nocturnal treatment without frequent alarms and they decided to do short daily instead.
Bought me back to earth as usual. My idea of travel would be going out to some wilderness and camping for a week, nothing 5 star here either.
As for dialysing in centre, I only looked inside a renal unit once befpre I started training, they were all very nice but I think I would have crawled up the wall before too long, it was just not for me. I wanted to do my training and get out fast!
I think Aussies in general think they are pretty tough (we call it “cracking hardy” ), it never once entered my head that I couldn’t do this and I will persist will nocturnal because I like the slow blood flow rates and the long term benefits for the cardio vascular system.
Most renal patients I have met don’t know much about their condition and just leave it to the nurses. I think nurses and patients over here have a more casual attitude than those in the US (or Canada?). Hopefully that is changing thanks to forums like this and more people outside of our cities will give home dialysis a try.People just expect you to handle anything (She’ll be right mentality, we call it).
Really and truly, if I hadn’t had some of the advice I have gotten from this forum I don’t know where I would be.
When I think more about Nocturnal I don’t think our summer heat and those frequent electrical storms have helped me relax at night either :lol:
Beachy, I don’t know how long you have been trying nocturnal but I can assure you, your not alone. When we (dad and I) first came home, I had a real hard time sleeping during his treatments. I would spend days napping just from a lack of sleep at night. I thought I would go crazy. But then I just got so exhausted, I slept and after a couple of weeks of realizing nothing was going to go wrong I finally got to where I could go to bed and not even think about the dialysis going on. I soon will have to go back for training and learn how to access dad’s fistula, I am sure I will be with you in starting all over again with the sleepless nights until I get used to taping the needles just right and have the confidence they won’t come out. Are you not sleeping because of alarms or just worry?
Wow, it sounds like you are doing a great job as carer. What a terrific person you must be
I have been at home trying nocturnal for under 4 months. I started dialysis in August.
My lack of sleep is due to fear of problems(real or imagined) alarms,cramps in hand, discomfort at lying fairly still for 8 hours and generally feeling alert instead of relaxed. I am sure it will get better and I don’t mean to sound like a whinger. I am lucky I also have a wonderful carer/partner who helps me and is there when I need him. Last night I had one of the longest sleeps, needles worked and no alarms so things are looking up and I am sure we will get there. I’m not done yet. 8)
Your not a whiner. Your just a newbee. I wouldn’t spend much time worrying about the machine or alarms. One thing is for sure with the Fresenius when something is wrong it will alarm and stop so you are safe. Second the alarms will wake you up so why worry that they might happen. When dad and I first came home, I wanted him to lay perfectly still so we wouldn’t get alarms but then I realized this was stupid. If he couldn’t sleep the way he wanted too he wasn’t going to get any sleep and if you can’t sleep what good is nocturnal. So instead I just let happen what would happen and after a couple of weeks of practice and trying different things I got to where I knew how to tape the lines etc. so we wouldn’t have alarms. I’m sure I’ll go through the routine again when I start using the fistula and I’m a 5 year veteran. There have been times when I though about daily but if you get used to having alarm free nocturnal treatments there is nothing like getting up in the morning and know the treatment was all done while you slept and you didn’t even think about it.
As I mentioned in another thread, I’ve had to do short daily for the past few nights because nocturnal has been suspended due to a possible manufacture problem with the blood tube sets. When I first started at home, I initially did short daily for 3 months before moving to nocturnal, but going back to it from nocturnal, even temporarily, is something else. For a short daily, I do a 2 hour treatment. Now that I’ve been on nocturnal so long and sleeping on it, I find even a 2 hour treatment feels so interminably L-O-N-G and B-O-R-I-N-G. On nocturnal, most nights, I’m asleep after the first 30 minutes and until the end of treatment alarm sounds, so I don’t really feel those long 7 hours. It’s also hard to revert to watching fluid intake and phosphorus, and to taking TUMS again. I’m sure glad it’s only a temporary situation.
Once you learn how to use the fistula and the taping down procedure from Chris L. It will only take a couple of nights of worry! Everything is so secure that when Ralph turns on his side nothing happens. It is truly amazing just how comfortable we get doing the dialysis.
The observers chucke when they have had to call me with off line computer problems (no longer have that issue). I would get up re-boot,
go back to bed and be a sleep in minutes.
We just recently had a problem with the heprin pump alarming. The girls called me every hour so I could check to make sure heprin was administered. I would go right back to bed and be asleep in seconds.
Good Luck with the fistula.
Thanks Pat, it puts to rest some of my anxiety over going with the fistula.