Does anyone out there still on a Freni (that must be just about only Pierre, Bear and Marty’s dad left) turn the sodium down manually for treatments?
My blood pressure was starting to creep up so we knocked the sodium back to 138 from 140 by pressing Conc button every treatment . (Conductivity goes from 14.1 to 13.8.) Knocked my Diastolic pressure from the 90’s down to the 70’s over a couple of weeks. 8)
Is this authorised by the dx unit beachy?
Yes, still on Fresenius, and no desire to change even if I could. It works well, and it really doesn’t take that much more time. Reliable too. If something goes wrong, I don’t depend on the manufacturer. The local techs are at my place the next morning (except Sundays). There doesn’t seem to be anything they can’t fix or replace on site on those machines. No cryptic Red 38 alarms either 
No, never. BP is never regulated by adjusting the sodium. It’s all a matter of adjusting dry weight up or down a bit… and on home hemo, I find that this is something that I have to be aware of all the time. When my BP starts creeping up, I know it’s because I’ve gained real weight, and so my DW has to be increased accordingly… and vice versa.
If you try to control BP by changing the sodium concentration, you can’t tell what’s going on with dry weight. The concentration of sodium in our blood has to be within a very narrow range anyway.
Why does my DW change so much? (1) I eat better and so I gain weight, and (2) I exercise a lot more and so I lose weight and possible gain muscle. These two things are always happening and counterbalancing each other - and so my BP creeps up or down over time (like a week or two). When it starts getting too low (less than 120/70 before going on), or too high, I change my DW accordingly by 200-300 ml. When necessary, my neph will change it by a lot more than that.
In my experience, sodium is only a factor when people have hypotension on dialysis. Sometimes they might use sodium profiling for this, but they don’t use that on home hemo here, even though the machine can easily do it.
Pierre
Hey beachy!
I don’t know about sodium settings in daily programs yet, but with in-center txs, patients use a variety of settings as we are all different in our needs. I read once where a man said he was comfortable with a sodium of 138. I have used a sodium setting of 140 and that was my best stretch of txs, but only because the cond. stayed at a consistant 14.3 average on that particular machine.
I find that staff are not educated indepth to know which settings the patients need. They will try things. I do not like to be anyones guinea pig :x Thankfully, I have stumbled upon settings that work for me, but there could be better settings. Staff need more indepth ed. in this respect. It is very essential that txs. be individualized to the patient.
I agree with what Pierre shared re bp and dw. However, the wrong sodium setting for a patient’s needs could affect bp and tx comfort.
Well, you know, as far I as know, sodium concentration in the blood is almost always around 140. It’s one of those few things which don’t ever change much. There might be some variation of it once a person starts dialysis, but it’s not something that needs repeated adjustment. If it’s at the normal of 140-141, and you don’t get hypotensive due to the treatment (as opposed to because of a DW which is too low), you’re good to go. Mine has been 140 since the day I started dialysis 3 years ago. Since conductivity on the machine is primarily a measure based on the sodium in the water, it stands to reason that conductivity will change a bit if you change the sodium concentration. We’ve had this argument before, I know, but it makes no sense to adjust sodium in order to get a specific conductivity, since that measurment itself has a .5 margin of error. Just my opinion though. It’s Canada Day… I don’t want to argue
Pierre
Ha, Happy Canada Day pierre, hope you are out there celebrating with some nice wine and food! 
Amba, of course this has been approved! I don’t do a thing without my neph and nurses approval. My nurse has been doing special post grad studies and this is his specialty. Will try and get him to share the info he has found on sodium. He has been brilliant, unfortunatley he has just moved on to a better paid job as a clinical nurse specialising in pre dialysis eucation. I feel very sad as I know guys with his experience are light on the ground 
Pierre, I had to adjust my dry weight UP, not down. Adjusting the sodium down 2 worked for me. I have had high blood pressure for years and it is so good to be finally where it should be, without any meds. I have had trouble finding my dry weight, but now have that sorted. Have put on exactly 1 kg in 11 months of dialysis. Although went out for a big pigout last night so today might be a different story.
I am definitely not suggesting anyone else try this, but for me, sodium seems to have been the key.
8)
Just thought I would ask beachy, had me worried for a minute! lol
Last night I had problems with BP dropping, which has happened before. I had dialed in 3.5 to take off and over the first 30 minutes it dropped to 110/70. I know that is not all that low, but I know from past episodes if I didnt pause the UF it would continue to drop. After staying awake monitoring BP until 4am I gave up and turned the UF off all together. I woke up early and put UF up to 2L (had about 90mins to go), and my BP held up. I am sooo absolutely frustrated with this, I just want to tear my hair out 
I am going on the machine again tonight to get the rest of the fluid off, if it happens again I am going to go crazy. I dont know whats causing it either Has anyone else experienced this before?? It has happened to me at least 3 times now since the start of the year. I had extensive tests and nothing showed up. So I put my dry weight up 2kg and slowly my BP came back up, but it took time. My BP actually then went high, around 160/100 give or take. So I dropped my weight by 200ml each treatment til it came back to normal. Now it seems the same thing is happening again. I am loosing sleep over it, and Im starting to get so worn out. What I have been doing for the past few weeks is having the UF off for the first half an hour so that my BP can stabilise. It has been fine so lastnight I wound up the UF total after 15 minutes, and thats when the problems started.
Sorry for such a long post, I am just getting quite upset about this.
beachy:
nurse has been doing special post grad studies and this is his specialty. Will try and get him to share the info he has found on sodium.
Please do post his findings. I find it so strange that dialysis staff does not get enough training in this most essential aspect of the tx. This would be like a brain surgeon who did not know what to do once he got inside the brain, or a heart surgeon who didn’t know what to do when operating on the heart. The nephs don’t know how the machine operates and staff have no idea how sodium and solution balance affects patients. Only the brighter staff like your nurse pursues more indepth comprehension of the tx.
I have had a few staffers out of the many who could actually really deliver an accurate, comfortable, safe dialysis tx. It’s amazing to me that the industry education is so lacking.
First, let me say that I totally disagree that nephs don’t know how the machine operates. They may or may not be trained to set up a treatment themselves, but they don’t need to. That’s why we have nurses. They do know what the different parameters do. They know what dialysis does. Of course, I only know what goes on where I live, not anyplace else.
Amber, absolutely, I have had the problem you describe in your last post about dropping blood pressure. It really is counterproductive to deliberately stay awake in fear of BP dropping. I mean, lack of sleep can make you go insane.
When that starts happening, it’s almost a sure thing that you have gained some real weight (and this is VERY common). If dry weight is not raised accordingly, it means that we are gradually drying ourselves out more and more. Long, slow nocturnal is great because it allows for shift of fluid from extracellular spaces to circulation at about the same rate that the UF is working. This keeps BP stable. However, if we keep drying ourselves out too much because we don’t adjust our DW as needed, then there’s no more fluid to shift. The result will inevitably be low blood pressure.
There are two things you can do if you have already gotten to this point and you’re already on a treatment. The policy in my program here is that there’s some concern if BP just prior to going on is less than 120. If after going on treatment, it drops to 110 or less, you cannot let that go. It becomes too risky at home where you can’t get immediate help in case of a hypotensive crash. So the procedure is not to stop UF, but rather to infuse up to 400 ml of saline, 200 ml at a time. If that doesn’t bring the BP back up, then it’s time to stop that treatment for that day or night. There’s no point in going on with it. Just forget about it and call the unit the next morning for instructions about raising dry weight.
Now, I have no problem raising my DW a little at a time, say 200-300 ml per treatment. If more, or if I have a hypotensive episode as I described above, then I contact my nurse. My neph has no problem raising my DW by more than a Kg in such cases. They absolutely do NOT want nocturnal patients to have low BP on treatment. It’s just a risk that cannot be taken.
I would not look for more esoteric reasons than dry weight, because otherwise you won’t be solving the problem. You will only be masking it, and then if your solution is to change the sodium concentration (assuming this works), you will quickly run out of usable adjustment range.
Pierre
Pierre:
First, let me say that I totally disagree that nephs don’t know how the machine operates. They may or may not be trained to set up a treatment themselves, but they don’t need to. That’s why we have nurses. They do know what the different parameters do. They know what dialysis does
Pierre,
Your Canadian nephs may understand machine parameters, but the nephs I have had do not. I would never trust my life to nephs I have had in this area. They can not competently order a tx if they don’t fully understand the functioning of the machine. The nephs I have had do not know one button from another on the machine. Some nephs do, but not the ones I have had. The majority of the nurses I’ve had do not know what the parameters do either. Remember, company training falls way short here. I spoke with a pct just this week asking how long her company training was. She said they put her on the floor after her first day of training! When I ask most nephs, nurses and techs tx questions they go blank :shock:
I have not experienced what you have with long txs yet, but I do understand how dw must be adjusted when the bp is too low as it relates to in-center txs. Certainly it is possible to go up or down in one’s weight by a lttle bit and throw the goal off. In-center however, it may also be fluid that is not releasing. Would be nice if we could all afford a Critline machine to add to our txs as from what I understand it accurately sees where the fluid is and then strategies can be employed to get it off.
Hi y’all,
Jane wrote:
Your Canadian nephs may understand machine parameters, but the nephs I have had do not. I would never trust my life to nephs I have had in this area. They can not competently order a tx if they don’t fully understand the functioning of the machine. The nephs I have had do not know one button from another on the machine.
This observation corresponds with something I’ve been told–which is that about 90% of the U.S. nephrology fellowship training programs do not focus on dialysis. They focus on renal physiology or acid base balance or treatment of certain diseases–but only a minority provide in depth training on dialysis itself. To be fair, not all nephrology is about dialysis, but it’s important to always keep in mind that a nephrologist is not necessarily a dialysis expert even if he or she is a renal disease expert.
This may be one of the reasons why home therapies are slow to catch on. MDs who have not been exposed to them during training don’t believe patients are capable of doing something they don’t know much about themselves. Some don’t trust patients to actually do their treatments and feel they have more control in the centers. There is a system set up in-center that makes it very easy for them to treat patients with dialysis without really fully understanding it.
Sad but true.
Dori:
Hi y’all,
Jane wrote:
Quote:
Your Canadian nephs may understand machine parameters, but the nephs I have had do not. I would never trust my life to nephs I have had in this area. They can not competently order a tx if they don’t fully understand the functioning of the machine. The nephs I have had do not know one button from another on the machine.This observation corresponds with something I’ve been told–which is that about 90% of the U.S. nephrology fellowship training programs do not focus on dialysis. They focus on renal physiology or acid base balance or treatment of certain diseases–but only a minority provide in depth training on dialysis itself. To be fair, not all nephrology is about dialysis, but it’s important to always keep in mind that a nephrologist is not necessarily a dialysis expert even if he or she is a renal disease expert.
This may be one of the reasons why home therapies are slow to catch on. MDs who have not been exposed to them during training don’t believe patients are capable of doing something they don’t know much about themselves. Some don’t trust patients to actually do their treatments and feel they have more control in the centers. There is a system set up in-center that makes it very easy for them to treat patients with dialysis without really fully understanding it.
Sad but true.
Executive Director
The Medical Education Institute, Inc.
http://www.HomeDialysis.org
http://www.LifeOptions.org
http://www.KidneySchool.org
Dori,
Thank you for this confirmation. There is no standard in dialysis for ed./ training of nephs and staff. Anything goes in the short company training process. As a patient, I can tell anyone that I have had to learn the hard way how to protect myself in dialysis. I did not learn it primarily from the nephs and staffs I have had who were overseeing my care. I had to beat the bushes reading all I could on the net and elsewhere in order to get to a point of safety/comfort for my txs.
This is why I am so intent on advocating for improved conditions in dialysis and opportunites for home txs. Our system is very flawed in areas and dialysis education of nephs and staff is one of them. The situation reminds me of the fairy tale, “The Emperor’s New Clothes”. Everyone assumes neph and staff are well ed/trained on the dialysis tx and know what they are doing, when the truth is, in most cases indepth ed/training is absent. Why? Because as I said, there are no standards of care and the regulations that are on the books are inadequate and not closely monitored.
A standard for ed/training of nephs and staff is needed and ample ed. of patients is essential. There are endless ways that ed. can be approached. Something like Kidney School, but more indepth on the dialysis tx., is one idea.
The reason why I am worried is because I dont think it is weight related. I have gone from reaching my goal one night with BP normal, to having low BP the next. I didnt give any saline because I wasnt feeling any symptoms of going flat, and I was 3kgs over my dry weight. I couldnt possibly gain 3kgs of body weight in 2 days. I stayed awake because the first time it happened I checked my BP and it was fine and I was going to go to sleep but I stayed up a little longer. Next time I took it it was around 80/40. Again, I was having no other symptoms, but I gave 400ml of saline just in case, which had virtually no effect.
Lastnight my BP was 156/80 pre Dx. Within 15 minutes it had dropped to 110/70, and I hadnt even turned the UF on yet. It was all over the place for a few hours until again I gave up, dialed in 500ml UF and went to sleep. I woke up 3hrs before due to finish and I dialed in the rest of the UF. My BP held up at around 125/80. My post BP was 168/98. I checked it again 2 hours later and it was 181/90. I am getting really fed up with it, because it doesnt matter what I do the BP is all over the place and I cant sleep. I start to doze off then wake up in a fright. I had about 4-5 hours sleep lastnight, which is better than previous night.
I can try to put my dry weight up, but considering I couldnt even dial in any UF for the first few hours, then I dont know if its weight related. Im going to pick the nurses brains tommorow, because Ive had enough.
Good luck. I think this is clearly a case to discuss with your nurse. BP shouldn’t vary that much.
Pierre
Did you ever take your blood pressure regularly for 24 hours before you were on dialysis? If you had, you might have seen changes in your blood pressure from hour-to-hour. The body’s normal circadian rhythm lowers blood pressure overnight while you sleep and raises it again before you wake up. The National Kidney Foundation’s K/DOQI Cardiovascular Disease guideline includes information on blood pressure, circadian rhythm changes in BP, BP meds, and more.
http://www.kidney.org/professionals/kdoqi/guidelines_cvd/guide12.htm
From reading this guideline, blood pressure overnight is supposed to fall more than 10%. People with this kind of dip in BP are called “dippers” whereas people that don’t have a drop of greater than 10% are called “nondippers.” Being a nondipper can increase your risk for cardiovascular disease. Although most hemodialysis patients are nondippers, daily and nocturnal dialysis are supposed to improve control of hypertension. I couldn’t find how many patients on daily or nocturnal dialysis are “dippers” vs. “nondippers.”
Since you’re concerned about how your blood pressure changes, talk with your doctor. Stress can disrupt sleep and disrupted sleep can affect blood pressure too…and can make people depressed too.
Beth, I do sometimes take it during the day if I remember. My problem is, as soon as Im off that machine I just want to shut the door and forget about it. I did take it during the day prior to my last Dx, and it was on the low side. Then by the time I took it pre Dx that night, it was higher. I was a bit flustered but it still doesnt make sense. Last time this happened I had my heart tested and whatever else and nothing showed up. The doctors are still looking for an explanation for my ongoing on and off low grade temps for the past 3+ years. It is high 99% of the time pre Dx. It always seems to be something wrong with no explanation.
Im not sure if Im a dipper or not, as this low BP problem has only happened about 4 times, and only on nocturnal. It seems to be one extreme or the other with me.
Well I went in for 5hrs today and I started going flat after 2.5 hours. It happened after I had lunch, probly shouldnt of had it but I was starving as I didnt have breakfast. Ended up only taking off 1.6, and came off 1.1L over my dry weight :? Going in again on thursday, will take my flow chart from home so they can see whats been happening at home. I just dont get it. Now Im worried that something else might be wrong thats causing it.
When you say “going flat” do you mean low bp, cramping, fainting?
Amba,
Did you cut off the UF at 2.5 hrs? Could you be gaining real weight or could your goal have been set too high when food weight has not yet made it though your tract? This happens to me sometimes after a weekend. Also, I will go for weeks without gaining a thing and then suddenly have a real weight gain.
Heather, it is all of those things. I posted a reply lastnight, not sure why its not there. Going flat basically means you are dehydrated and if not immediately treated, you will pass out.
Jane, I did turn the UF off for the rest of treatment. My BP still stayed under 120/70. I think after I have a drink, it takes a while to get into my system.