Questions about nocturnal HD

Discussions for Patients, Family, and Friends HD For Patients
1

Hello!

I encountered this site and am very glad I did! My fiancee’ is a type 1 diabetic, in kidney failure. He is on the waiting list for a kidney/pancreas transplant. His creatinine levels is 8.1. He has not started dialysis yet. He is going to get the fistula put in in 3 weeks. In the mean time, he may need to be admitted to the hospital for emergency dialysis, if he gets worse.
We are hoping to have him do nocturnal dialysis once his fistula matures. I would probably be the primary caregiver. My questions are:

  1. How hard is it?
  2. What is the training like? I work full time and have a 6 year old son, so taking off lots of time from work would be a major issue for me.

Any other advice or tips you have for me, as we start this process, would be greatly appreciated!

Thanks!

2

Re:Questions about nocturnal HD,

I have been on replacement hemodialysis for over 3 years and currently do home dialysis with the NxStage System One for a 4 hour + session 5 days a week. Currently, we do not do nocturnal due to comfort levels with my wife. The whole process still makes her nervous even though everything has gone well at home for nearly a year.

As far as “how easy is it?” at present, since we are used to the whole process, it is very easy for both of us now that we know the routine, however I cannot say that getting to this point was necessarily easy for either my wife or me. There is much to learn if you wish to do dialysis well, but you are in a good place to get to know what you are facing. I would highly recommend that you start with MEI’s Kidney School and participate in discussions on this board as well as several others that most of us likewise participate on.

First of all, access is one of the key issues in doing dialysis safely and well. It is standard to use venous mapping with US to establish the best site for a fistula. We only have a limited number of vascular sites that we can use to establish a fistula so preservation of ALL potential sites is the first order of the day. I have an upper arm fistula that works very well, but my forearm veins were sacrificed in creating the upper arm fistula. However, going with the lower arm fistula first does not destroy use of the upper arm veins later if needed. I would insist upon the vein mapping prior to fistula placement and then discuss with the medical team taking care of your fiancee if his veins are suitable in the lower or forearm site. Basically, we only have a total of 4 arm locations that are usually considered. There are many variations to this, but it is mainly upper and lower arm sites on both arms that we have to work with. They need to be preserved. You should speak to your medical team about how to preserve veins for dialysis access and then become the master of your own protection.

Secondly, studies have shown that vascular surgeons that do less than 25 fistulas DURING training have poorer outcomes than those that do more than 25. That is a valid question to ask. Remember, this is the number during training. American surgeons have much lower training levels in fistulas than Europeans especially and this does affect outcomes.

Thirdly, I am an internal medicine physician and there was much for me and my wife to learn even with my extensive medical background. I was fortunate to have one of my patients who was also the best tech at our unit teach me her tricks of the trade so to speak. Having a talented mentor is something to start to seek simply by asking who is the best at sticking fistulas. It is quite likely that the doctors and the nurses will know who the go to person is. You will indeed need a mentor who can communicate well with you in all of these issues.

Fourthly, I believe that there is much to learn as self care in-center first in learning self cannulation which is the hardest task in doing home dialysis whether short daily or nocturnal. It gives you a chance to become acquainted with all of the tasks of doing dialysis in a controlled setting. I personally believe that you should get your feet wet first in the dialysis unit and then learn the needed skills there and graduate to the home dialysis program from that setting. Others may disagree, but even with my medical training, I found that the best route for me.

Lastly, training for home dialysis usually takes about 3 weeks to master all of the tasks. With the NxStage, the machine is fairly simple and easy to set up once you have gone through the routine several times. However, that usually takes 3-5 hours 5 days a week for those three weeks to get comfortable with all of the tasks. That will be an issue during training with your work schedule and your child care since most units will not allow you to bring your child to the unit during training. In such, you are most likely looking at at least the morning or afternoon dedicated 5 days a week for 3 weeks to this training. You will need to work this out with your work and your child care.

So, is it easy, in many ways it is easy to us now, but there is a definite learning curve you need to get to work on right away since he is likely to start dialysis soon with a crt over 8. Hopefully he can avoid a catheter but you may not have time at this point possibly. One other option is to do PD temporarily while his fistula is maturing. It is one way to avoid damaging valuable veins while waiting for a new fistula. I would discuss all of these issues with his health care team and have them help you develop a plan for his best personal options with them knowing his current health care status. I have listed the sort of issues that I have personally encountered in my own walk in kidney disease for information that you can take back to your team to see if any of it applies to his situation.

Good luck, and keep learning and asking questions.

3

Welcome!

While obviously not great circumstances, you have definitely stumbled upon a very supportive bunch of people. It is a great resource as there are many very knowledgeable folks here. I have found it to be very helpful over the years.

Let me start by saying that I do not do nocturnal, I do conventional (3 txts a week) however… the process overall, is very similar, so I will speak to your specific questions as best I can.

A little bit about myself, so that you can relate… I am 30, have been on hemodialysis for 5 years since the birth of my daughter… she is 5. I did hospital base txt first (for about a year), and have been home since then (going on 4 years).

Dialysis itself, is a lot to handle at first. In my opinion, a lot depends on how interested you/fiancee are, in being in the ‘drivers seat’, and knowing all that you can know, to live the healthiest life possible. That said, I would imagine that your fiancee is likely not feeling particularly well, and ‘absorbing’, never mind understanding everything that comes will the new diet, caring for his fistula, home training and cannulating (putting the needles in his fistula) will be very overwhelming for you both.

I have to agree with Dr. Laird, that my strongest advice (though quite contrary to the belief of MANY), is to get your feet wet in the dialysis unit first. Watch… Learn… Observe… Ask Questions… Determine what your fiancee’s blood pressure is (when it gets too low/what he can tolerate)… his ideal weight… and how much volume he can tolerate removing… Get comfortable with the needles… All of this is much better done in a controlled environment, while everybody adjusts, and your fiance starts to get back on his feet, and starts to feel better. Again, not medically proven, just my opinion, having been there.

Your situation is slightly more complicated with a 6 year old at home. Don’t let me discourage you, it can be done, and YOU WILL DO IT, but it is important that you are both as comfortable as you can be, especially with a child involved. As a mom of a 5 year old, it is really important that we (husband and I) are calm, cool and collected… so that our child is not afraid of dialysis, and things related, when an Emergency arises (power failure etc). Being well trained is important, and not rushing through the training is crucial. For us, I did the bulk of the training myself… and my husband came in for ‘emergency’ training. It is quite a time committment - perhaps your local center could work something out through the evening for you? (Though that would be an extremely long day for you). It does depend on the type of machine you will be using, and how comfortable you both are with needles that will determine your training.

I think I am rambling… anyhow, please post as often as you need too, and try, as difficult as it is, to take some time for yourself.

This process can be very overwhelming to say the least. I wish you both all the best!

Kidney_Mom

4

I do nocturnal at home and have found it to be the least burdensome form of dialysis for me - I was in center for 11 years, for the last 8 years I have dialyzed at home more frequently. I live alone and take full responsibility for my treatments.

It depends on your unit but if your unit is supportive then I would suggest your fiance learn to do as much of his dialysis as possible. This will allow you to only come in to training for a few days so you can get the lay of the land while he learns to cross all the Ts and dot all the Is.

Peter’s suggestion to transition immediately to PD rather than agree to use a catheter should be given serious consideration. The data on surgeon skill in fistula placement relating to training is robust as they say - definitely a question to ask but you’ll find few US surgeons who meet the 25 procedure threshold.

Take it a day at a time - it really is a journey. Your inclination may be to dive in and be a full partner but - granted I’m speaking as a single guy but those that can’t teach as they say - in the long run letting him learn to take full responsibility for his health with loving support from you but only with an occasional assist will make for a stronger foundation for your future.

5

Some dialysis patients are capable of running their whole tx and some are not as they have more physical limitations. The more one can do for oneself, the more independence he will experience. But no two cases are the same. Some need more support than others.