Looking at the modality comparison charts at this site, much info is provided, but the one thing I don’t see is a measurement of how those on SDD feel from day to day as compared to those doing SND. SDD is an average of 15 hrs per week, whereas nocturnal is an average of 48 hrs per week. Is there anyone that has done both modalities who can say if they feel better in terms of energy, appetite etc, with nocturnal dialysis then they did with SDD?
Hi Folks
Hi Jane
Great question. One that I look forward to asking Dr. John also. I’ve done both. My issues were more mental with sdd than physical . With the long tx over night. I have two real physical issues, my buttonholes are sore.( I guess and can only guess it is from the blunts in the buttonholes for so long) And after two nights in a row my shoulders are very painful.(this I think is from having to sleep in such a way to prevent alarms, which you know doesn’t take much to set off). Both shoulders, to the point where I wake at 2 to 4 am needed to take a pain pill. I’ve asked my renal team about it and they dismiss it. I hope more folks chip in on this.
thanks
bob obrien
[QUOTE=bobeleanor;17277]Hi Folks
Hi Jane
Great question. One that I look forward to asking Dr. John also. I’ve done both. My issues were more mental with sdd than physical . With the long tx over night. I have two real physical issues, my buttonholes are sore.( I guess and can only guess it is from the blunts in the buttonholes for so long) And after two nights in a row my shoulders are very painful.(this I think is from having to sleep in such a way to prevent alarms, which you know doesn’t take much to set off). Both shoulders, to the point where I wake at 2 to 4 am needed to take a pain pill. I’ve asked my renal team about it and they dismiss it. I hope more folks chip in on this.
thanks
bob obrien[/QUOTE]
I have the very same concerns re the possibility of sore buttonholes, and physical aches and pains from not being able to change sleep positions without setting off alarms. I thought the purpose of a good access taping method serves to prevent the lines from bending thus causing alarms. I’ve read where some patients say they dialyze in a recliner. That’s not for me at all. It has to be a bed if I am going to sleep comfortably. I am hopeful that there are solutions to these problems, otherwise how would ppl be able to tolerate nocturnal.
But the main thing I wanted to know is, do you find that you have significantly better energy and appetite with nocturnal that you had with SDD, or not really?
Hi Folks
Hi Jane
As to how I really feels depends on my mental outlook. I could not deal with SDD due the fact that it hard for me to sit at least close to 4 hrs on SDD. So I went nocturnal thinking I could sleep and do dialysis. Even with good taping the machine still gets alarms. I was just at my center and talked with some others on nocturnal and the same thing. Just the a second or two, when a part of the tube is bent or you lay on it. And the alarm will sound. And at two in the am in dead of night the alarm sounds even louder.
So If I get a good night of sleep or if I was doing SDD and was able to get though it I felt great doing both forms
Thanks
Bob O’Brien
Hi Jane,
I did SDD for about 4 months before I switched to Nocturnal. This was after years on in-center.
The problem with SDD was the fluid removal was rapid. You had to get off around 2 liters (sometimes more) in 2 hours which is not a good thing. So, I would feel weak for a little while after treatment. Another problem which I had was being awake and having to sit through the whole treatment during SDD.
Though I had a few minor problems initially with sleep on nocturnal, I got used to it. For me, definitely, sleep is not an issue with nocturnal.
My Hemoglobin also improved quite a bit after I switched to nocturnal. I felt much better in terms of energy levels too.
Hope that helps.
Thanks
Kamal
Hi Kamal,
Glad to hear you have more energy with nocturnal txs. then you did with SDD txs. This is what I am hoping for. Do you have a good way of taping your access so alarms don’t go off at night and disturb your sleep?
Yes, Jane. I use two pieces of transpore and taped them in the form of an ‘X’. You can see a pic here:
One more thing I wanted to tell you was its not as if you will better the day you switch to nocturnal. It takes a few months for you to feel totally normal. For a few weeks after I started, I would feel tired immediately after a treatment. But gradually, I felt better. Initially I was a little worried. Why was I feeling weak immediately after a session? But after a few months of nocturnal, I was feeling really, really good. I couldn’t have asked for a better modality.
Thanks
Kamal
Bob, I’ll answer your question you asked on the Webinar thread here. Generally speaking I feel much better and my labs have never been better. I don’t have any prblems regarding pain with my fistula. However, I have been to the IR for three fistulagrams since strting nocturnal. I don’t think that’s due to NHHD because I cannulate as often as before on SDD. Since I sleep in a recliner, I did have an ulner nerve issue earlier this year. I’ve rectified that by using an additional cushion under my right arm (my fistula is on the left). I had a major issue with insomnia since mid-January to a few days ago, but U think I’ve broken the cycle and have slept great the last few days. I was also sleeping great before my insomnia attack. Alarms – I do have some. but definitely fewer than when on SDD. If a 21 occurs, the most prevalent, it will usually clear it self just my me moving my arm or blood lines. If it’s another alarm, I’ll hit mute/stop/go in a daze. I’ll continue to do that to a point and then actually wake up enough to deal with it. For a dialysis modality, I don’t think there is any better right now that is availablee to us.
Kamal,
Thanks very much for the pic. Couldn’t quite tell if you have an upper or lower arm access. Whereas the tape job looks like it secures your needles, does it prevent the lines from bending too? Do you sleep in different positions at night or do you not swithch? What model machine are you on? What is your scrip and lab results?
Your other comments certainly were music to my ears. Don’t recall anyone else posting that it took several months before they realized the full effects of nocturnal. I would of been concerned if I was doing nocturnal for several months and not experiencing an improvement over SDD in energy. When I started SDD, the improvement was immediate. Glad that the modality is working so well for you. It makes sense that with over three times the dialyzing hrs as SDD and gentler txs, one would feel improvement, but not all reports I have read have been positive.
Hi Jane,
I have never had a problem with the tubes bending. I am using a Fresenius 4008S with Fresenius F6 HPS dialysers and Fresenius/Renax/JetFlow tubes.
I sleep either on my back or I turn to the left - the side I have the fistula. I do not turn to the right at all. I also have a piece of string tied to my bed through which I pass my finger and tape two fingers so that I cannot move the hand that has my fistula and the needles in it beyond a certain level. I can send a pic of this arrangement if you wish. I believe this helps prevent the needles from moving and blood oozing out.
I do 7 hours a night, 6 times a week, pump speed - 250, dialysate flow rate - 500 ml/minute. I guess that’s what you mean when you ask for my scrip, right? I stay in India so I’m not sure!
Yes, it did take a while before I felt ‘normal’. And I really must thank Pierre who was on nocturnal when I switched. He was really an inspiration. He told me that it would take a few weeks before I would see the benefits. Eventually I did feel much much better as I described earlier.
Thanks
Kamal
Hi Kamal,
I just viewed a pic of the FR 4008S online. It looks like an updated version of the 8H machine we have here in-center. I had not heard of it previously. Is it a full sized machine or the shorter version like some use in home txs in the U.S.? Over here, many of us use NxStage. We like the easy set-up, no RO and the ability to travel with it.
I see you have a system for preventing your lines from bending. Yes, I’d like to see the pic. You stay pretty still at night. I am hoping to be able to switch around more often so need a good taping method.
Yes, scrip = prescription. How about your lab results? Do you have KT/v, URR, pre and post bun? If so, what do you get?
I remember Pierre. Yes his posts were very instructive
I appreciate hearing about how you run your txs and the results you get.
Hi Folks
Thanks Rich.
I still would like to have Dr. John answer if this question is picked. Dr John is on the forefront of nocturnal.
I sleep in a bed and from time to time get alarms that I do the same hit mute stop go. I talked with 4 men from center just on 2/20/09. And they said the same thing But we do get red 35 at the half way point. This would drives us nuts.I get up look around for the problem nothing.Can’t find anything. I’m not saying this happens every week. . The one we had in common we all slept in a bed. Maybe it’s bed VS chair? You and Bill sleep in a chair. I didn;t get a chair for nocturnal. Part of my pain is from a shoulder break I had some yrs. But my buttonholes (upper left arm) had it shut down 3 month after I started using. Since then no problems getting blunts in and flow is smooth. Would size matter? My are 15 gauge x1" backeye clamp). This is a blunt. What are you using?
Jane , My labs are great both on SDD and nocturnal. And when I get I really good night sleep no real wake ups, just the mute stop go .Like Rich said you do that in your sleep. For me I take heavy pain med right before I go on and the med wears off by 2to 4 am. waking me and I take another dpill med shot. But we get up at 5 am to get Eleanor ready for work. On SDD I just could not find a time slotthat fit my time. Between set up and clean up for me on SDD it almost 5 hrs. With 3hrs and 10 t0 20 minutes of real time on machine. And set up and clean up was not a race, like the training time in center.
If your thinking of nocturnal there is no law that says if you don’t like you have to stay on it. With any issue I might have I won;t go back to SDD I was in center , SDD now nocturnal. And nocturnal is the way to go.
thanks
bob obrien
[QUOTE=Jane;17303]Hi Kamal,
I just viewed a pic of the FR 4008S online. It looks like an updated version of the 8H machine we have here in-center. I had not heard of it previously. Is it a full sized machine or the shorter version like some use in home txs in the U.S.? Over here, many of us use NxStage. We like the easy set-up, no RO and the ability to travel with it.
I see you have a system for preventing your lines from bending. Yes, I’d like to see the pic. You stay pretty still at night. I am hoping to be able to switch around more often so need a good taping method.
Yes, scrip = prescription. How about your lab results? Do you have KT/v, URR, pre and post bun? If so, what do you get?
I remember Pierre. Yes his posts were very instructive
I appreciate hearing about how you run your txs and the results you get.[/QUOTE]
Hi Jane,
The Fresenius 4008s is not portable. It is the same machine that is used in many hospitals and dialysis centers here. I will send a pic that shows my fingers being tied to string.
I have never done kT/V, URR or pre/post BUN after switching to home hemo. I remember getting my creatinine and Urea checked once post dialysis and they were almost normal (normal as in for people not on dialysis!)
Thanks
Kamal
Hi Bob,
I can’t wait to try nocturnal. I am the type person who likes to get prepared ahead of time. I know there must be ways to greatly minimize alarms. On SDD, I get a 21 each tx minutes after I get on- probably just an air bubble from connection. I get rid of it fast. Then the other alarm I get most often, and only on some txs, is a 24. This is due to the way my lines are taped. I was trained to circle the lines around and tape down so they can not pull loose. But when I bend my arm, I sometimes cut off the flow, thus an alarm. So, this is why I am working on a new taping method for nocturnal. I don’t want to wait til I am on tx with my sleep interrupted to figure this out- an ounce of prevention is worth a pound of cure as they say.
Hi Kamal,
Interesting that you do not do labs for KT/v, URR or pre and post bun. Do you do other labs? By looking at pre and post bun, especially, we are finding that even the nocturnal scrip can be improved.
[QUOTE=Jane;17308]Hi Kamal,
Interesting that you do not do labs for KT/v, URR or pre and post bun. Do you do other labs? By looking at pre and post bun, especially, we are finding that even the nocturnal scrip can be improved.[/QUOTE]
I do my Blood Picture (includes Hemoglobin, hematocrit, platelets, WBCs etc.), Potassium, Phosphorus, Liver functions, PTH every couple of months. The last two because of specific problems. The Phosphorus because it tends to become too low. Ditto for the blood picture.
Thanks
Kamal
Hi Folks
Hi Jane
By all means go for nocturnal. I hope Dr John gives some insight into plus and minus. Rich and Bill both use dialysis chairs with cushions. I and some folks I’ve met sleep in beds. Even if Dr John would say that chairs are better than beds as to alarms. I’ll stay with bed and my spouse. And all my labs are checked and 9 x out 10 come out great. KT/V and phop. sometimes are not great but that’s me.
The whole thing behind dialysis is you being happy. I used to go back and over with my team. I then put it on paper as a statement of fact. I not there to make them happy and me unhappy. But it took written statements. Talking was a waste of time. The Dr ,nurse would never put down anything I was saying about Bob being a BIG part of the team. So now I write what I need to get across to them. They tend to give me there mad faces. But now I happy knowing that my words are on paper and dated. That is key to dialysis.
No dialysis unit has any power over the dialysis consumer. They can’t due to the money they get from Uncle SAM.
thank
bob Obrien
Hi Bob,
What is wrong with your KT/v and phos? Some of us on NxStage found out our scrips were not optimal enough and when we learned how to adjust the scrip we didn’t just get pretty good #'s- we improved everything!
Really glad you have gotten a sense of control from putting things in writing. Not everyone can do that. Happy it works for you. Maintaining dignity when UNprofessionalism is going on is important.
Hi Kamal,
We do labs every month and more often, even weekly. if something is out of wack. Would never go two months as that is much too long.
Bob, I’m too lazy to use a dialysis chair, it Laz-e-boy for me all of the way. As soon as I sit back in that luxurious leather, I fall asleep right away. None of that fake stuff for me!