Home Hemo
Joined: 23 Jun 2003
Posts: 22
Posted: Tue Sep 02, 2003 9:14 am Post subject: Conductivity
--------------------------------------------------------------------------------
Patient: I've noticed that running the sodium at 149 causes my mouth to become dry also, but I'm afraid to change it back to 148 where I was previously because it might change the conductivity from 14.9-15.0 and then I would feel bad again. I'm not completely sure how the sodium and the conductivity work together, and have been unable to get any "straight" answers from the dialysis people. Like your people, my people don't seem to understand how the conductivity affects the way you feel. After the last service, when I asked the dialysis people to change the conductivity setting back to where it was, I was told that the setting was correct, and it was like "fine tuning a car" - the setting just happened to be "off a little - and "fine tuning put it back where it belonged". When I asked them to "fine tune" it for me, they said they couldn't do that (in other words, just suffer). I guess like they told you, it's company protocol. I talked to my doctor, but he doesn't know anything about the machine (wouldn't you think he'd know or at least, learn? My machine alarm is set at the same settings yours are. However, when the svs kicks in, the settings go to 14.5, 14.0, and 13.5. That's what tells me that the svs and conductivity are connected. Wish I could get someone to explain this. Answers to your other questions: Alarms: no, as referenced above (svs); On home hemo: a little over a year; 4 as opposed to 3 treatments: felt a tremendous difference - in-center, I was running 3 days a week for 3 hrs; 4 1/2 hrs per treatment: started to increase the time from 3 to 3 1/2, then 4, then 4 1/2 - just to the point of getting really tired of sitting in the chair. At home, you can run as long as you want; Weight: I weigh 123 pounds; Sodium at 149: I was at 148 - talked to the doctor about raising the sodium because I felt so bad. This was before I found out about the conductivity; I run sodium modeling and UF profiling. Sodium modeling (svs) is where I program in 149. However, like I said, I might be able to set it back to 148, but am afraid of changing the conductivity. Fistula: I have a fistula. pH: I will try to find out what the pH is and let you know.<
><
>Hopefully, working together, we can get treatments where we both feel great, as well as help anyone else who is having problems.
*********************************************************************************
Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Sep 03, 2003 12:45 am Post subject: Low bps
--------------------------------------------------------------------------------
Hi Marty, This is just one of the things I find most disturbing about in-center. Pts. are told it's "normal" for bps to drop, and hypertonics are passed out on a regular basis, and yet home pts. don't seem to have this problem. The pts. with large fluid gains are told it's their fault, but I had this problem at first too, and that's because unneccessary fluid removal was taking place. I don't choose to think the low bps are normal; it's going over dry (trying to take off extra so pts. can last to their next tx..) and that doesn't happen to your dad now because he has a little bit of fluid removed at a time, and very slowly. I remember how literally draining those low bps made me feel; it sucks the life out of a person. Lin.
*********************************************************************************
Mark
Joined: 03 Sep 2003
Posts: 4
Posted: Wed Sep 03, 2003 2:05 am Post subject: what they don't tell you
--------------------------------------------------------------------------------
I read on another board that the thinking of many nephrologists is to suck you dry because it has to hurt to be good dialysis. But then nurses posted to say that's not true at all!
*********************************************************************************
patient
Joined: 29 Oct 2002
Posts: 137
Posted: Wed Sep 03, 2003 3:36 am Post subject: Conductivity
--------------------------------------------------------------------------------
home hemo,<
>I see why your sodium is high--because you're on a sodium modeling program ( I didn't know the term svs). Do you know which program it is.. step, linear? I've been told with sodium modeling one might start off at 148-150 but then it gradually tapers down over the course of the the tx ending with 140 ( 30 min prior to the end) so as to avoid thirst. So, does your sodium taper down or do you mean that you are on a straight 149 the whole tx? When you say your mouth is dry do you mean very ucomfortably or just a little dry?<
><
>Yes, like yours, my staff lacks education on how sodium and conductivity work together. They have no concept of how it affects the patient, causing terrible discomfort which is tortourous when ocurring over the course of the hours of the tx and then continues to aggravate the body in terms of other equally terrible symptoms in the aftermath of tx. Rather than admitting that they don't know what their lack of education is causing, they say trite things like, "You shouldn't feel anything" or "that couldn't possibly be the problem" or "I just don't know - none of the other patients are having this problem??"-- Right of course, because the other patients are hiding under their blankets! <
><
>As far as you saying it seems your doctor should know something about the operation of the machine, I coudn't agree more. That would be like
inging ones car to a mechanic who has no concept of how one part of an engine affects another. Yet this is not a car we are talking about -- its our bodies!<
><
>I wasn't clear on what you said about the limits. Can you say that again? And do you mean you kept trying more time on the chair until you felt better or decided that 4 1/2 was the most you could sit? <
><
>Please keep in touch on this board as you learn more and so will I. I feel this is very crucial info and I'm still wating for someone to explain it knowledgeably. I've asked alot of people about it, but no one has explained it satisfactorily yet.
*********************************************************************************
Home Hemo
Joined: 23 Jun 2003
Posts: 22
Posted: Wed Sep 03, 2003 10:11 am Post subject: Sodium
--------------------------------------------------------------------------------
Patient: The svs is where you set the sodium modeling on the Fresenius 2008H. You set the amount (I set 149), then the time you want the sodium to stop (I'm on a 4 1/2 hour run so I set the time to 4 hours), and then step, linear or exponential (sp?). I set it for step so the sodium steps down and then stops 1/2 hour before the end of the run. Sometimes I'm very thirsty the last hour and after the run - other times I'm not thirsty until after the run. I don't do very much liquid - 1/2 glass milk with dinner and a little water to take my meds. I do ice chips, but try to watch that even because you can overdo ice chips.<
><
>The time is just something I worked up to. I can do 4 1/2 hours, but after that, I am just extremely tired of sitting in the chair. Our goal is slow nocturnal. Medisystems has a blunt needle that can be used with buttonholes. For some reason, the dialysis unit cannot get these needles. (We have been waiting since July 2002, over a year). We have been told they are doing a study and cannot get the needles until the study is over - and we have been told it's political. For whatever reason, we are unable to order these needles. We could do nocturnal with the sharp needles, but I am not a light sleeper and am afraid of infiltration. However, we are using the buttonholes (have 2 sets) alternating between runs. It's amazing how much better condition my fistula is in from when I was in center and they were cannulating over the entire fistula. Hopefully, we will be able to go on nocturnal soon. (I am hearing that there is a study out there saying that there is a problem with calcium being leached from nocturnal patients. Am waiting to get a copy of the dialysis unit - should be in the mail). I don't see that as much of a problem since you can take calcium supplements.<
><
>Stay in touch. Hopefully, you will learn something from my experiences and I can learn something from yours. My e-mail address is fluffydg@pacifier.com if you want to communicate confidentially.
*********************************************************************************
Lin
/>
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Sep 03, 2003 11:05 pm Post subject: Or
--------------------------------------------------------------------------------
you could start another post about conductivity and sodium, so that the info. doesn't get lost in with this post about home hemo. That way others might see it and also repsond. Lin.
*********************************************************************************
Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Thu Sep 04, 2003 2:03 am Post subject: Blunt Needles
--------------------------------------------------------------------------------
Home Hemo our unit has been using the blunt needles for over 1 year as alot of our nocturnal patients <
>use the botton hole technique with the blunt needles. We are in NYState maybe that makes a difference. But if you wantmr ask our center where they get the blunt needles I will. Or if your center wants to contact our center I can give them a contact name.
*********************************************************************************
Home Hemo
Joined: 23 Jun 2003
Posts: 22
Posted: Thu Sep 04, 2003 8:23 am Post subject: Blunt Needles
--------------------------------------------------------------------------------
Marty: I would appreciate any information you can obtain! I'm not sure what the problem is, but seems like the only time anything happens is when the patient is proactive. If you will get me the information, I will pass it on and see what happens. Thanks a bunch!!
*********************************************************************************
Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Fri Sep 05, 2003 11:49 pm Post subject: Blunt Needles
--------------------------------------------------------------------------------
Home Hemo, I take dad back to clinic on the 19th, I'll ask about the blunt needles then. At first in our program everyone had to use a catheter because they were afraid of disconnects. But then a couple of years later they found some devices to secure the needles in place so felt safe in using the fiscula.<
>However, they were afraid of patients using sharp needles so they went to the button hole technique so the patients could use blunt needles. I think the patients educate the staff instead of the other way around. Seems like we have more of an interest in finding out what can or is being done.
