Just do it - whatever machine you have to use

There has been a lot of machine-specific commentary on this board lately, at least, since I’ve been here. My personal message has consistently been that the importance of the make of dialysis machine you use is of very little significance compared to just the benefits of daily hemodialysis - short daily, and especially daily nocturnal hemodialysis.

My experience with daily nocturnal hemo (8 hour treatment, overnight, 6 nights per week) has been nothing short of astounding. To give you a concrete, specific example, last night, I started setting up sometime around 9, and I was on sometime after 10. I had a few venous pressure alarms the first hour while I was watching TV anyway. This seems to be common, because at least in my case, the venous and arterial pressures seem to want to equalize, more or less, the first hour after starting the treatment. After that, I fell asleep, and there were no more alarms all night. I woke up with about 30 minutes to spare before the end of treatment. After taking myself off, I started the acid clean and then heat disinfect cycles in the dialysis machine. I didn’t need to go back to sleep, because I felt totally refreshed after a good night’s sleep. I was actually eager to get up and start the day. Now, if this had been a regular 3/week in-centre treatment, as I did for almost 3 years, I would be sleeping right now, and I would in effect be wasting at least half the day beyond the actual treatment time. I didn’t lose any time from having to do an 8 hour treatment, because I start it at about the same time I would be going to bed anyway, and I’m off by 6 or 7.

Instead of having to spend half the day sleeping this morning, I was out walking my dog at 7am on this beautiful Canada Day morning in the Nation’s Capital, a mere half hour after coming off my treatment, and during the time the machine was doing its heat disinfection. Since starting daily hemo at home in March, this is something that I’ve been able to do much more than before. Until that time, I was lucky if I could walk a block without getting tired and short of breath. Now, I can easily walk 6 blocks or more, and I can do that almost immediately after my nocturnal treatment. There is truly zero recovery time, unlike regular hemodialysis, and my energy levels seem to be much better over the entire day. I’ve gone from feeling half dead most of the time to feeling virtually normal. It’s like I’ve gotten 50% kidney function back.

But the benefits don’t stop there. I can now eat anything I want (it’s not totally unlimited, in the sense that if I decided to eat 10 bananas a day, I would certainly run into problems). I almost can’t eat enough phosphorus, and I actually have to supplement myself with Coke, and eat lots of cheese and ice cream. Compared to 90% of dialysis patients, both PD and hemo, for all practical purposes, I have NO diet. Not only can I eat, but I want to eat. No appetite problems now, that’s for sure. I have a voracious appetite.

As far as fluid goes, well, like the bananas and potassium, I imagine I would start feeling pretty full if I drank 4 litres per day. But so far, I drink something with meals and whenever I feel thirsty without giving it a second thought, and I still end up having to take off not much more than 300ml/hr, and in fact, most nights it’s less than that. So, for all intents and purposes, it seems to me like I have no fluid limit at all. That cold beer I have now every afternoon goe down real smooth :slight_smile:

All in all, for the price of actually having to setup and do the dialysis 6 nights per week (and I could probably get by with 5 nights), I feel almost like I don’t have kidney failure at all.

I don’t exactly know what the mechanism of this is, but, still at the same dry weight, my blood pressure is lower. At this point, I don’t need any BP medication at all. To me, just that is worth it.

So, my advice to anyone who is motivated enough to do their own hemodialysis is to not agonize over machine choices and don’t sit there waiting for the next new upgrade or development. There’s always something new around the corner, and while you wait, you could be enjoying the benefits of daily hemo right now. Just do it. The sooner you get over that first hump of 6 weeks training, and the initial anxieties over doing your own treatments at home, the better you will feel and the quicker you will get to that point. It’s almost as good as having a kidney transplant.

I mentioned motivation already, but, I want to mention again that you do have to be motivated to be more in control of your treatment and to actually do the treatments. If you have to use a conventional dialysis machine, don’t be put off by that. It’s not that hard. If I can do it, anyone can.

Pierre Lachaîne
Foundation for IgA Nephropathy
www.igan.ca

Hi Pierre

I too am a strong advocator on Long dialysis runs. Since being on Nocturnal, I have energy to burn. I am going to spend the day playing beach volleyball with my friends pretty much all day. I then expect that I will be “clubing” all nite and into the morning. Tomorrow (actually my night off D.), whenever I wake up, I will be going for a 6km jog/run. Even if it wasn’t my night off D, I would still go for a jog/run right after a nocturnal a run, I have 0 down time after dialysis.

I use physical activity as part my medical therapy. Its keeps the UF down to a bare minimum. In fact, I will keep some fluid on (.5-1Kg) in order not to run dry on a strenuous day. This helps me feel mentally and physically great.

In terms of a transplant, there are significant pros and cons to hemodialysis, and needs serious consideration.

With a transplant, obviously, you are unattached and you have the ability to travel. But there is a heavy price for this luxury. Heavy meds that causes you to catch viruses easily, and the significant increase for developing cancer. You may require phosphate binders and blood pressure meds. Experience many off days and be take extra care with sun exposure.

In comparison with Hemodialysis, the 3 day a week in hospital treatment, there is no contest. A transplant is far superior in quality of life and health management.

But in comparison to long and often dialysis runs, this is not so easily concluded. On nocturnal, I take no drugs of any kind, other than IV iron once a month, no EPO and a once a day vitamin, replivite. That’s it.
I have energy to burn, very few off days and eat liberally.

At this time I have taken myself off the transplant list. And I am not alone. Many of the other nocturnal patients at my clinic have made the same decision.

Well, I am off to Ashbridges Bay, happy Canada day Pierre!

Now that’s a fact, if you weigh the risks and outcomes between transplant and home dialysis seems home dialysis wins on the most important areas…especially when the patient has other health problems that make the transplant riskier…

All the expensive anit-rejection medications and side effects versus supplememts and better than 3 days a week therapies in-center now come on, hands down! :lol:

This sounds great, but my question is: How are you getting 6 nocturnal treatments a week?

Medicare routinely reimburses for three treatments a week. Some dialysis clinics are afraid to risk offering more dialysis if Medicare won’t pay for it.

Some people have medical reasons why they need more than 3 treatments a week. A doctor can write a medical justification letter to the Medicare fiscal intermediary (the dialysis payer for Medicare). If the reason is determined to be a good one Medicare will pay for more than 3 treatments a week. Doctors have to figure out what reasons are considered good as no one has a list of approved reasons and it seems to vary across the country (and possibly from person to person depending on who is working on the Medicare claim).

Some patients have commercial insurance such as provided through an employer. Commercial insurance typically pays what treatments the clinic provides rather than setting an arbitrary limit on the number of dialysis treatments allowed. Although a clinic with a contract with the commercial insurance will probably not get payment at its full charge, the amount it will get is probably significantly more than what Medicare pays. It is to a patient’s advantage to do what he/she can to keep his/her commercial insurance that probably has greater benefits than Medicare. It is to a clinic’s advantage to have as many patients with commercial insurance as possible so the clinic can offer more innovative treatments to all patients.

Some dialysis clinics offer dialysis 5-6 days a week because they believe that when patients have more frequent/longer treatments, they will have better clinical and quality of life outcomes. At the same time, they believe that they can save money over time as their programs grow because patients may not need as many costly drugs that are not paid for by Medicare like they used to be and patients may be in the hospital less keeping more money in the dialysis clinic instead of going to the hospital. A number of clinics that have looked at their data say that studies on their patients have proven these benefits. There is a study that is going to look at the cost effectiveness of daily, nocturnal, and conventional hemodialysis. You can read about it on this website.

Hi Pierre

I too am a strong advocator on Long dialysis runs. Since being on Nocturnal, I have energy to burn. I am going to spend the day playing beach volleyball with my friends pretty much all day. I then expect that I will be “clubing” all nite and into the morning. Tomorrow (actually my night off D.), whenever I wake up, I will be going for a 6km jog/run. Even if it wasn’t my night off D, I would still go for a jog/run right after a nocturnal a run, I have 0 down time after dialysis.

I use physical activity as part my medical therapy. Its keeps the UF down to a bare minimum. In fact, I will keep some fluid on (.5-1Kg) in order not to run dry on a strenuous day. This helps me feel mentally and physically great.

In terms of a transplant, there are significant pros and cons to hemodialysis, and needs serious consideration.

With a transplant, obviously, you are unattached and you have the ability to travel. But there is a heavy price for this luxury. Heavy meds that causes you to catch viruses easily, and the significant increase for developing cancer. You may require phosphate binders and blood pressure meds. Experience many off days and be take extra care with sun exposure.

In comparison with Hemodialysis, the 3 day a week in hospital treatment, there is no contest. A transplant is far superior in quality of life and health management.

But in comparison to long and often dialysis runs, this is not so easily concluded. On nocturnal, I take no drugs of any kind, other than IV iron once a month, no EPO and a once a day vitamin, replivite. That’s it.
I have energy to burn, very few off days and eat liberally.

At this time I have taken myself off the transplant list. And I am not alone. Many of the other nocturnal patients at my clinic have made the same decision.

Well, I am off to Ashbridges Bay, happy Canada day Pierre!

I’ve heard of people preferring to stay on nocturnal hemo rather than take the risks inherent in a kidney transplant. I’m on the list, and I’m getting to the point where my chances of being called anytime are fairly good. I don’t think at this point that I would refuse a kidney, but I would almost certainly turn down a marginal one. Nocturnal hemo makes me feel great. Admittedly, I haven’t been on it that long though. I’ve seen some people have a pretty rough time after a transplant, so, it does make you think if you actually want to go that route, with the medications and all. I’ve had a pretty rough time with blood pressure medications over the past decade, and I’m not looking forward to having to take multiple medications again. But in the end, I’m sure I will be happy to get a transplant anyway.