My husband will have to go on dialysis sometomes in the future ( we hope a very distant one) but…
We went for an info session about home dialisys, the hospital supports Home PD ( including nocturnal) and home day time hemo ( 4 times a week). They do not support nocturnal daily hemo.
We are in Toronto, Canada.
We do not know yet what we will select, and will be grateful for as much info as possible. Also somebody knows if NX hemo home machines are vailable in Canada
Here, the same machines are used for short and nocturnal home hemo, and patients can choose anywhere from 4 to 6 days/nights per week. I think a few even do 7 nights/week. I was doing 6 originally, but I’m doing 5 at present.
Toronto has a daily nocturnal hemo program, don’t they? They are the grandaddy of them all. They were the ones who developed the current concept and proved it was safe.
Is your husband looking at peritoneal dialysis as well? That can be a good choice to start out. It’s a lot less complicated than home hemodialysis, but the diet is not as liberal as it would be doing daily nocturnal hemo.
I will bother you more, from reading the site I realize that this body of knowledge will help us to make a decision.
My husband is also a diabetic and has high BP, he is now on insulin.
The doctor indicated that we are half a year to a year away from dialisys.
In your opinion ( I have posted the same request on PD board) how is better to begin. The nurse at home dialysis center in hospital said that nocturnal PD is easier, but they also support home hemo d4 times a week.
Again having some answers from people that went through the same ordeal helps a lot and gives us a sense of trying to be in control ( a bit).
I couldn’t do peritoneal due to some other medical complication, but, I think that most people would find it best to start with peritoneal dialysis first, and if it works out for them, stay with it as long as it works or until you get a transplant. It doesn’t necessarily work well for everybody, but if it doesn’t, you simply switch to hemodialysis. This way you preserve all of your possible accesses for future hemodialysis, and you keep your residual kidney function longer. It’s a lot easier to learn peritoneal, and it’s a lot less work to actually do it at home, especially at night with an automatic cycler. There’s also more freedom, because you can do PD virtually anywhere as long as there’s not a lot of dust blowing around. With hemodialysis, you have to be wherever the machine is.
However, even though it’s more work and a little more complicated to perform, daily nocturnal hemodialysis is by far the best in terms of diet. There is no diet at all really, and in most cases, no fluid restriction at all except maybe on off days. But best of all, it makes blood pressure normal without any medication. I know, because I’ve had severe blood pressure problems for years - which disappeared within just a few days after starting daily nocturnal hemo.
Good luck. When I had my treatment options classes, it turned out I was exactly one year away from being on dialysis. But that was plenty of time to have the fistula surgery, and by the time I started dialysis, my fistula was ready to be used. This is a big advantage if the choice is hemodialysis.
If your husband does end up on hemodialysis by choice or necessity, it’s not that hard to learn, even though it’s more complicated than peritoneal.
I don’t usually write “I agree posts” but: I agree with Pierre - if it is an option start with PD then try home hemo six times a week for eight hours. Better to cut back if needed then to start with too little and increase.
I have been on dialysis for 7 months, 6 at home doing alternate night haemo and am finally getting the hang of it. I thought of doing PD initially for the freedom to travel aspect but after seeing a friend, who started nocturnal PD shortly before I needed to, put on an large amount of weight (presumably from the glucose solution used ) I had second thoughts. My main concern was the fact that I love swimming and thought the chances of infection from peritonitis would be heightened.
I hate to “disagree” with Bill ( for once), but although I had visions of being able to start straight into 6 nights nocturnal per week, the reality for me at the moment is 3 to 4 nights. Any more than that and I would be crawling the walls due to discomfort of lying fairly still for 8 hours tied to a “washing machine”! In my area of Australia, there is no remote monitoring, just a nurse on call if needed, home patients try to start doing 3 to 4 nights per week and work up to 6 if the blood tests warrant this.
While my blood tests and BP’s are good and I don’t have food or fluid restrictions ( I also still produce urine and am on no meds apart from cholesterol ) I am happy with this. It gives me time to get my life sorted out and gives me a few peaceful nights sleep. This is just my opinion for what it is worth, but your dialysis should not rule your lifestyle, it should be there to improve it, not take it over.
Good luck with whatever you decide, it can be a very difficult time but you do surface out the other side!
Pierre, weren’t you doing 6 nights per week before? Are you easing up because your tests are still okay ? 8)
Yes, I recently went from 6 to 5 nights per week. My blood work results are outstanding, and I decided to take the extra night off. My nurse suggested it. That’s still 35 hours of treatment per week compared to the 10.5 hours I was getting in-centre. I’ll try that for a while. It breaks up the week very nicely.
my blood tests and BP’s are good and I don’t have food or fluid restrictions
Beachy do you eat whatever you want not limiting anything to be getting good labs on 3-4 night nocturnal? How much do you drink per day and how do you feel on your off days?
I recently went from 6 to 5 nights per week
And Pierre how do you feel on your days off? I read where the Lynchburg program started with 6 nocturnal txs, but they cut it back to 5 as the patients needed a break. But then I’ve read where other home patients choose to dialyze 7 nights a week as they feel better with that.
As an incenter patient, I feel very well on my first day off tx, but by that night I begin to feel blah with the mounting fluid and toxins. I always think I would feel so much better if I could get everything off each night. To Beachy and Pierre, does doing nocturnal txs 3-5 nights a week make you feel so improved that even on your days and nights off you don’t have the highs and lows? Or do you just prefer having some nights off the machine for other reasons?
I feel pretty good. The extra day off is really no big deal. There seems to be lots of “storage” room in my body for things to build up an extra day mid-week. The big advantage when doing it 5 nights is just that after a day off, you’re not looking at 6 straight nights of dialysis until the next one. That’s a long stretch.
I take Saturdays and Wednesdays off. But I’m not locked into anything. They leave a lot of choice to the patients here, as long as you talk to them about any changes. Short daily, long nocturnal… it doesn’t matter. They do want a minimum of 4 days per week though. The machines have no limitations in terms of treatment time or the slight changes in prescription if doing short vs long, so that’s one good thing about the program here.
We still agree beachy, after all I’m doing 3h 5x or 6x What I was trying to say is that the default choice should be 8h 6x at home. Then after trying it or thinking about it and talking with your doctor and the rest of the team you decide that 5x would be enough or 2h fits with your life or any other combination of frequency and length that is fine with me, you might even decide that you’d rather dialyze incenter. What I object to is the idea that 3x 3h incenter should be the starting point.
I feel great both after dialysis and the next day now I am getting some sleep!!! Feel so good I have gone back to the gym 4 days a week, drum and dance my heart out in a Samba band(very hot and sweaty) and swim several times a day!
So far I eat whatever I want (I stay away from salt though) and drink when I am thirsty. I don’t drink excessively unless I am going on 2 consecutive days as my BP gets up around the 150/95 mark but it is so dam hot here at present I probably drink more than I should.I can tell when I have overdone it because the area around my stomach feels full. I would be probably drinking at least a litre per day at present.
I have around 1 kg to take off in a day.Neph is happy but it is only early days for me and as I lose the residual kidney function I may have to rethink things.
Now we have this Nocturnal thingy worked out a bit better the thought of doing a night or 2 more doesn;t fill me with such fear!
so glad to hear you can give yourself a bit more of a break
Before I would make the decision to start on PD, I would consider the risk of infection. I would consider the fact that for a lot of patients the nightly dialysis isn’t enough and they are required to make exchanges during the day. I would also consider my weight. I would also consider the diet and fluid restrictions. When I started out with dad we started with nocturnal 6x a week and I don’t think the learning would have been any easier had we done PD first. I too wish everyone the best in what they choose and I would suggest they do a lot of research on what they think there choice will be. I am sure the PD board here has information on the advantages and disadvantages.
I don’t know what caused your husband’s kidney failure, but many PKD patients cannot do PD because the enlarging kidneys make the abdominal cavity too small to hold sufficient solution to be effective.
When you check out the PD board be sure to ask them how long they have been doing PD. Even if he can’t do PD for very long, starting w/ PD may give your husband a few years before he has to start using his veins for HD.
It looks that my husband kidney failure is due to more than one cause, and it went down very rapidly. The diagnostic is bad small vessel circulation, that combined with HBP and diabetis ( but not these two as major cause) caused the failure.
We are trying to learn as much as pssible before taking a decision.
You have received a lot of advice, and one thing I’ve always found is that people on dialysis tend to be evangilistic about their own chosen method of dialysis. In the end, it should be a lifestyle decision, combined with medical considerations. If all options for dialysis remain open, you will have to choose one. But it’s important to remember that this is not a decision written in stone. Whatever the decision, it can be changed. People change all the time. They start on PD and then decide it’s not for them, or sometimes PD doesn’t work well for them (this is unpredictable), and they switch to hemodialysis. Or, they start on hemodialysis and then decide to try peritoneal dialysis. I’ve known some to switch and then go back to their original choice. If hemodialysis is the choice, don’t feel pressured to start immediately into home hemodialysis. If your husband ends up starting hemodialysis, there’s nothing wrong with doing it in a dialysis centre, and taking it from there.
I’ve known plenty of people who did well on PD, and many who did as well on hemodialysis. And I’ve known people who didn’t do well on PD or hemo. Choose based on good information, but don’t agonize over it. Your husband can always change later.