Need Info on Starting Nocturnal

Hi their you experienced people That’s it the gig is up… Jessie and I are going after nocturnal / home hemodialysis …The decision is made … no more debate … no more jerking around… Jess just walked in from school and I had given him this final weekend to make up his mind as to whether he wanted me to go ahead with the planning or stay in clinic…He’s green light so that’s it… rest assured… We “really have” been talking about this issue for month’s now…

So now I’m looking for information… training parameters… anything to help pave the way. We realize that not all clinics are the same…and that their is a training period… what we want to do is be prepared as much as possible beforehand… To us that only makes common sense

As it stands to-date Jessie take his own weight, bp,enters information on his log … K,Ca,Pv,Pa,Qd,Qb,TMP, MAP , Ideal weight he basically knows these things, he knows how to read blood work and what the numbers mean and what goes with what… To tell you the truth I’m surprised … he’s really
picked up fast.

Who else to ask but the people that have been through all this and that is you… right … you… so if you have anything that you think would help well then that would be just great… perhaps a site. a brochure, a piece of written work anything.

I suspect that some may be saying… slow down… that is understandable…and trust me I’ve been walking very gently and with the utmost care… one step at a time… but now that Jess has thrown up a green light… well its now a new ball game so to speak…and he’s my partner.

So if ya can help …Fire away

Richard & Jessie

Jessie and you will do just fine on nocturnal. It normally takes about 6 weeks to train. You will be taught how to set up the machine. It’s nothing difficult just takes a while to remember. The best advice I can give you is to do it the same way everytime. It not only makes remembering faster, it easier to figure out what happened if you forget to clamp a clamp or something. You can just go back through the steps in your head and see what you forgot.
If you have any specific questions, just post them and I’ll tell you what I know from our experience of doing noctural for over 6 years on the Fresenius.
If your using NxStage Pat comes to the board and she is doing nocturnal on the NxStage Machine. Also have some Austrialian friends that drop by that are doing nocturnal and they can probably give you answers too.

Marty

[QUOTE=Country Girl;11922]Jessie and you will do just fine on nocturnal. It normally takes about 6 weeks to train. You will be taught how to set up the machine. It’s nothing difficult just takes a while to remember. The best advice I can give you is to do it the same way everytime. It not only makes remembering faster, it easier to figure out what happened if you forget to clamp a clamp or something. You can just go back through the steps in your head and see what you forgot.
If you have any specific questions, just post them and I’ll tell you what I know from our experience of doing noctural for over 6 years on the Fresenius.
If your using NxStage Pat comes to the board and she is doing nocturnal on the NxStage Machine. Also have some Austrialian friends that drop by that are doing nocturnal and they can probably give you answers too.

Marty[/QUOTE] Great thanks Marty you bet Jess is going to be just fine. I had heard that the machine is like driving … practice and repetition… We are using Formula 2000 plus … we have already bagun learning what the machine does… its features. Sent e-mails to NxStage but I don’t think they have hit the Canadian market as of yet.

“What worries me the most” about all this is self cannulation that is why Jess is in self care… going to start with cannulation just as soon as “HE” is ready ! Other than that I really don’t see problems… he’s very fast at picking up …

Your from down under… Must know of Geelong and John Agar… he’s the person who really turned us on and tuned us into nocturnal… Looking back I thank the stars we did not opt for PD “that almost happened” until I found out about nocturnal and dialysis frequency. “Jessie” made the final decision to not do PD and if I influenced that decision than … good!

Richard & Jessie

Hi there Richard and Jessie
I haven’t been posting much lately as it all seems to be about Nxstage which isn’t available in Australia.

Marty gave some very sound advice about doing things the same way each time. If you look back on all the previous posts by Pierre you will also find a wealth of knowledge on Nocturnal with a Fresenius.

I still consider myself a newcomer although I guess I have been using the Freni at home for 16 months now. I found it all quite overwhelming to learn at first as I was also new to dialysis and I went straight home to doing Nocturnal (because I was inspired by the Prof). In hindsight I wished I had given myself some time on shorter runs to get my confidence up as I found (still find) sleeping whilst on the machine problematic. That may be because of the sheer volume of dialysis I am getting keeping me wakeful or just me stressing about it all.

I am sure Jessie will be different because he is younger and will cope better(: But do consider sorting out the actual processes at home until you are both comfortable before you attempt Nocturnal otherwise your sleep will go down the tube as well. Everything seems so much easier in the daylight.

I also found the training I received in emergency procedures to be inadequate. We have had quite a few stuff ups and loss of blood through human error and not enough quick thinking actions when things have not gone to plan. So have those emergency steps clearly sorted as I am sure you will.

When Jessie’s fistula is ready, learn to Buttonhole (mine was ready 5 months into needling) Buttonholing is the BEST THING I learnt. My stressing about finding a new spot in a small fistula each night went from 300% to 5%. Blunt needles are safer when sleeping and no more local anaesthtic needles was such a blessing.

Lastly, take it all slowly. One step at a time and don’t beat yourself up if things don’t go exactly to plan. I know you will be anxious to get home but just make each day count. You are on a winner.

Take care and the best of luck to both of you. Will be thinking of you and as Marty says keep asking questions, someone will always be there for you.

We are using Freninius 2008H. We had 5.5 weeks training. It takes time and is sometimes a little overwhelming but everybody learns at their own pace. Some people take more time than we did some less. It is just like the training nurse told us that major problems are going to happen so infrequently that you are going to have to look in your manual to see what to do anyway. She always stressesd that one of the main things was to make sure your line clamp was in place so that you would not get any air. We have been doing buttonholes since Sept. I formed them and I do most of the needling he knows how to do it and is quite capable but just lets me go ahead and do it. I don’t know about all centers but we always have a tech on call if you run into something that you don’t know what to do. If al else fails you just come off the machine and go on the next night. We are doing 5 nights a week and his bloodwork is perfect.

[QUOTE=delphine;11925]We are using Freninius 2008H. We had 5.5 weeks training. It takes time and is sometimes a little overwhelming but everybody learns at their own pace. Some people take more time than we did some less. It is just like the training nurse told us that major problems are going to happen so infrequently that you are going to have to look in your manual to see what to do anyway. She always stressesd that one of the main things was to make sure your line clamp was in place so that you would not get any air. We have been doing buttonholes since Sept. I formed them and I do most of the needling he knows how to do it and is quite capable but just lets me go ahead and do it. I don’t know about all centers but we always have a tech on call if you run into something that you don’t know what to do. If al else fails you just come off the machine and go on the next night. We are doing 5 nights a week and his bloodwork is perfect.[/QUOTE] Hi Delphine… that what I was looking for …you say “you are going to have to look in your manual” that’s what Im talking about a manual I need to get hold of thing like that Richard C/O Jessie

Whatever unit you train at they should give you a manual for the machine you are using and general dialysis. Every machine works differently so you need the instructions for the machine you train on.

Hubby is not your typical dialysis patient either, never was. When people first meet him they don’t believe he is on dialysis. He is using a chainsaw now to cut firewood. I am a teacher and I paid into an account for 4 years so I could take this one off and still get paid. That’s why we did our training this year!! He has built a boat (while on in center hemo) - a cabin cruiser 33 feet long that we love using in the summer. He did all the work inside and out himself He does a lot of carpentry work - just finished redoing our main bathroom. He hasn’t let the fact that he’s on dialysis slow him down. He spends so much time out in the garage doing things that mom says that’s where he is going to die. I always say at least he will die happy. His motto seems to be its part of my life accept it and move on!!

Delphine
If you have read how people on this forum spend their lives, you would have to agree that there is no such thing as a “typical dialysis patient”. Most lead active lives, whether they are working, raising kids, travelling or just getting “out there” where and when they can. Home dialysis just makes things easier but there are many in centre dialyzers who also still manage to do these things.
Cheers

[QUOTE=delphine;11930]Whatever unit you train at they should give you a manual for the machine you are using and general dialysis. Every machine works differently so you need the instructions for the machine you train on.

Hubby is not your typical dialysis patient either, never was. When people first meet him they don’t believe he is on dialysis. He is using a chainsaw now to cut firewood. I am a teacher and I paid into an account for 4 years so I could take this one off and still get paid. That’s why we did our training this year!! He has built a boat (while on in center hemo) - a cabin cruiser 33 feet long that we love using in the summer. He did all the work inside and out himself He does a lot of carpentry work - just finished redoing our main bathroom. He hasn’t let the fact that he’s on dialysis slow him down. He spends so much time out in the garage doing things that mom says that’s where he is going to die. I always say at least he will die happy. His motto seems to be its part of my life accept it and move on!![/QUOTE] glad to see hubby is doing so well… jess has not been sick …that we are trying to avoid… speaking of manuals i think we have a handle on it … we do have the in’s and out’s of the machine that i suspect Jess would have to use… so for now we learn to-gether Richard C/O Jess

the h machine is one of the mos difficult to do home hemo

Fresenius now has the 2008K at Home machine which was designed for home use.

It will probably be a few years before we see the machines change here. What they are using for the home patients are the machines that they used in center before they changed to the Pheonix machines. We don’t find it hard to use because we are used to it now.

The Fresenius 2008K for home use isn’t a whole lot different that using the 2008H. It just has more screens to walk you through the process of setting up and trouble shooting alarms. It does make training some what easier as you have a screen guiding you instead of having to remember what your taught; but the overall maintenance of the machine and RO remain the same.
Personally, I already use the 2008H and wouldn’t spend the 1 or 2 days it took to become familiar with the 2008K to make a change. I’m not putting down the Fresenius machines. I like the Fresenius machines as they are very, very, very dependable but be it an H or a K designed for home use the changes weren’t that significant to me.

delphine wrote:“She always stressesd that one of the main things was to make sure your line clamp was in place so that you would not get any air.”

Do you mean the clamp on the saline bag line or something else?

What I meant was the air detector clamp so that no air can get to you. On the Fresenius it is right underneath the venous chamber. Whenever you get an alarm and the pump stops that clamp closes so that nothing can get to the person. It is a safety feature so that you do not get air.

delphine,
Eventhough the air detector should be set up properly, have gotten air on several occassions with air detector set up correctly on a H machine. At the time, very good nurse searched for cause but was unable to find out how air got past the air detector. Just to let you know, it can happen. So, if there are any other precautions that can be taken, I would like to know that myself.

Unregistered, You may have gotten air several times but I find it difficult to believe the problem was the air detector if your talking about a Fresenius Machine. 1st of all when the drip chamber got low it would start alarming.
Second it would clamp the line and shut the machine down. Now if someone forgot to close the little door all the way or forgot to thread the line in the air detector at all or the sensors were dirty, you could escape the alarms. But 99% of the time or better you still wouldn’t get air. Also if one of the above conditions did exist so the air detector didn’t alarm your machine would have to be empty on the arterial side. That’s highly visiable. Then you would hear a wooshing sound in the blood pump as the pump line was getting empty. And there would be no reading right from the get go of your BVP.

Country Girl,
I can only tell you as I stated before- the air detector was properly set up each time, but there was no alarm. You mentioned a dirty sensor-that’s possible. My nurse at the time checked the machine from top to bottom, but could find nothing out of order. Each time, I was in great distress and had to be disconnected from the machine. After the nurse checked the machine over and my symptoms subsided, I was then put back on with no futher problems. When I have a machine problem I like to solve it so it won’t happen again, but I never solved this issue.

Somethings missing here. If there were air in the system, the nurse just couldn’t check the machine over. She’d have to disconnect you. Put a recirculator on the lines and clear the air from the system. I can’t imagine anyone putting a patient back on the machine with an air detector that wasn’t properly working it would be pulled for service. How do you know the air detector was working after you were put back on? Did someone create an alarm situation to prove it was working? Just because you didn’t get anymore air doesn’t mean the problem was resolved if your talking a problem with the air detector.

This experience of getting air happened to me yrs ago when I was first on dialysis. As I said, I was disconnected from the machine. I recall the nurse visually went over the set up. When she could find nothing wrong and my symptoms had subsided, she put me back on again. I was very scared to go back on again as if she couldn’t find the problem it could happen again. But she assured me things looked ok and this is when I was very new to dialysis and had more trust in the staff’s professional judgement. This also was one of the best nurses I have ever had and eventhough I was divided, I went with her discretion. I am not familiar with a recirculator-I just recall that she went through the set up again very well before she put me on again. I also don’t recall if she created an air alarm test. I was unfamiliar with these testing strategies at the time.

This air experience has always bothered me as I never figured out how the air got to me. I had no control of the unit I was in at the time as to whether they checked out the machine or did regular maintenance. As home patients, especially, we need to be very well trained.