Dave
Joined: 07 Jul 2003
Posts: 10
Posted: Fri Aug 29, 2003 5:45 am Post subject: hh
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I thought the reason patients can't get an extra tx in-center is because Medicare won't pay for it unless the doctor orders it and doctors don't order it unless the patients labs show they are not getting enough clearance? That's what my doctor told me.<
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>If you get good txs in a unit where they treat you well that can work too. Its not about social life. I have plenty of friends and family outside dialysis. But there are patients who do not have good families or many friends and they enjoy their friends in dialysis. If the units gave them more hours of tx such as the ones that are offering daily or in-center nocturnal, they could benefit. For some its better to get out of the house. It gives them the push they need to get up and bathe and get dressed and go. This disease makes you not want to move so having to go to a unit is an incentive to get moving. Also, some people may feel its gross to have the machine in their bedroom or den and don't want to have it there for them to look at or their family to have to see.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Fri Aug 29, 2003 8:23 am Post subject: Not just one choice
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Hi Dave, What we're saying is that WE who want home hemo shouldn't be told only in-center is available. It's no more right than telling someone who wants in-center they MUST do home hemo; different strokes for different folks!<
>I've had lots of experience working with people in home-care situations and I can honestly say that families who are close and supportive don't ever mind having medical supplies and equipment in their homes. I've also seen these families after being trained by the professionals do everything from doing dressings and giving injections, to giving enemas. When you love someone, that is what you do. If you can't do it, than you enlist help.<
>The same is true of dialysis. If home hemo isn't up to your likeing than stay in-center and that will be ok for you, but others who want home hemo should have it as an option, after all that's the law, but the companies are getting away with not offering itj, and that's just not right! Lin.
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Home Hemo
Joined: 23 Jun 2003
Posts: 22
Posted: Fri Aug 29, 2003 9:59 am Post subject: Home as Opposed to Center
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My doctor ordered an extra treatment when I started home hemo because I had so much trouble with low blood pressure. That extra treatment helps with the low blood pressure, but the thing that has really helped is finding out that I felt much better when my conductivity was at 14.9-15.0 as opposed to 14.5 or 14.6. The difference has resulted in NO low blood pressures. The difference is absolutely astounding! The center where I get my care tells me that there's only 1 other home hemo patient in addition to myself. All the other patients are peritoneal - and they have a bunch of them. Of course, most of the nurses are very experienced in peritoneal, but none of them are real experienced in home hemo. This may be one of the reasons centers don't advertise their home hemo programs - even those that do have them. You have to be very proactive. For example: my nurse wanted to put me on a K1 bath because my potassium was running a little high. However, she told me it would lower the conductivity. I told her I didn't want to lower my conductivity because I would feel bad again. She intimated that "it was in my head". I did some research, found out there was a drug called Kayexelate that you could take to bind the potassium. I talked to my doctor, he prescribed it, and I will not be going on a K1 bath, at least not if the Kayexelate works. On the home hemo program I'm on, I've found that I have to do the research to find out what's out there. The nurses/doctors either don't know or don't tell you, but when you come up with the information, they "follow your lead". Home hemo is not for everyone, but for those who are willing to make the effort, the rewards are so gratifying. By doing the research, you not only learn many things you didn't know about your condition, but you have control over making yourself feel better. I spent 2 years in a center, and there is absolutely no comparison to home. Even with the extra work in setting up and
eaking down, ordering, etc., I find time to go to exercise class twice a week and dancing every weekend. My husband and I lead very full lives in spite of dialysis!
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Fri Aug 29, 2003 4:51 pm Post subject: To Home Hemo
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You were running a high conductivity previously and you are running an even higher conductivity now. May I ask what model machine are you on, sodium, pH, length of run, pump speed, bicarb, dialyzer? How did you discover the benefit of higher conductivity?
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Deborah
Joined: 13 May 2003
Posts: 2
Posted: Fri Aug 29, 2003 6:26 pm Post subject: to home hemo
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Can you tell me what running an extra tx has to do with achieving a better bp? I come into dialysis with bp that is totally normal. I take no bp medication either. But by the end of tx my bp drops into the 90's and I always feel weak post tx. <
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>I know what you mean about the nurse wanting to put you on a 1K bath when your K got too high. The same thing happened to me and I had 3 nightmare txs which made me feel so sick before they put me back on a 2K. <
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>The doctor did say I could take kayexalate instead, but I had heard other patients say they got terrible diahrea from it so I opted for the 1K. <
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>My K got up there again this spring and this time I chose to stay on the 2K, no kayex. and I just watched my K real carefully. My blood was drawn and I got my results in 2 more txs and my K was all the way back down that quickly. <
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>Oh let me add, that the time I was put on the 1K it caused my K to go all the way down to about 4. If I had not stayed on them to give me my results, I might of stayed on the 1K longer and then I would of been in danger from too low a K. I'm serious, no one was watching it closely. It was scarey.
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Home Hemo
Joined: 23 Jun 2003
Posts: 22
Posted: Mon Sep 01, 2003 10:21 am Post subject: Home Hemo
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Patient: I am running on a 2008H Fresenius, sodium is at 149, don't know the pH, 4 1/2 hours, pump speed at 370, bicarb is Centrisol, MB 330, 650 grams, and F160NR dialyzer. Discovered the benefit of higher conductivity by accident. The machine had just been serviced and the conductivity started going to 14.9-15.0. Didn't know why all of a sudden I felt so good. The only thing it could have been was the conductivity. I found out for sure the next time the machine was serviced. Evidently, they had set the machine wrong the time before, because the next time, the conductivity only went to 14.6 and I felt awful during,after, and all the next day after dialysis. What we're are doing now is not putting as much water in the jugs (lowered the amount about 3/4 inch before adding the bicarb). The conductivity came out "right on the money" - went to 15.0 (after the svs kicked in) and back to feeling good again. One of the bio techs told us we could do this so felt okay about trying it. I was ready to "sell my soul" to get back to feeling good again.<
>Deborah: The doctor and dialysis nurse felt an extra treatment would keep the blood pressure from dropping because there wouldn't be as much fluid removal for 4 runs as opposed to 3. That worked fairly well, however, after we got the conductivity up to 15.0, the blood pressure never drops below 100. I don't know why and they don't either. I think it gives me more sodium and some people just require more sodium. Not everyone is the same - but they like to treat us all
that way. I haven't tried the Kayexelate yet, but on the bottle, it says it might cause constipation - nothing about diahrea. However, the dialysis nurse told me that they used to use Kayexelate all the time - and some people got diahrea and some people were constipated - so don't know until I try it. However, everything I have been hearing reinforces my belief that I shouldn't go on a K1. Would rather watch my diet really close. We have heard from a Fresenius tech that there is a way to change the numers on the conductivity screen to take off more potassium. Am still researching this. Also, the doctor thinks that my hematocrit might be the problem (was 49.4 on last labs - stopped Epo), and I need to have some stenosis removed. We're kind of in a holding pattern until 9/26 when I will go in to have the stenosis removed, and the HCT comes down.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Mon Sep 01, 2003 11:56 pm Post subject: Low BP
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This subject is often discussed and I don't know the reason why but this is what I do know. When my father was in-center his BP would drop drastically at the end of treatment then go even lower at home to the point of us taking him to the ER a couple of times. However on slow nocturnal his BP is in the normal range and when he comes off the machine in the morning it is slightly higher. Nothing above 130/85.
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Tue Sep 02, 2003 2:40 am Post subject: conductivity
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home hemo,<
>Boy am I glad to hear you confirm what I have been figuring out, too! In my case, I am run at a 140 sodium. I am one of the only ones in my unit who runs a straight 140. Most patients run 144. One time, the sodium was left at 144 from the patient before me as the tech forgot to set it to 140 for my tx, and my mouth started turning to sandpaper during the tx. My tounge was sticking to the roof of my mouth as my mouth became so dry. I could hardly speak to tell the tech. We checked the screen and found the problem.<
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>Just like you, I started having some good txs and found that the only thing that was different was the conductivity was running 14.2-14.4 and I would feel so much better. A few times, I was put on a different machine with conductivity in the 13's and I got crampy and sick, so I told my head nurse that I could tell the conductivty affected me. She didn't understand how that could be. No one else on the staff understood it. My doctor did say I felt better, because the sodium was higher. <
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>I was glad to get back on my regular machine. I had many comfortable txs in a row. But then the machine technician serviced the machine and adjusted the settings so that the conductivty now runs at about 13.9-14.0 and I have been back to very uncomfortable txs again. <
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>One thing I have found to offset the uncomfortable txs is to raise my goal about .3. I don't fully understand the connection, but removing less fluid helps if I gain 2 something. But like this weekend, I gained 3.2 and I set my goal for 3.6 although I actually needed to remove 3.8. The tx went well, but when I got home I felt wiped out and my body hurt.<
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>I requested that the machine technican get my conductivity back up to 14.2-14.3. Any higher than that and the high conductivty alarm will go off. But the machine tech said he can not adjust it as it is company protocol that all machines must be set the same.<
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>So, in order to compensate, as I said, I must take .3 less fluid off and can't count on feeling well all the time unless I gain less fluid.<
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>Like you, I seem to need more sodium through a higher conductivity, but I must be run at the company standard. I have had so many bad txs and no one seems to hear me. The one good thing is I've learned alot about how the machine affects my body through trial and error of all that I've experienced. <
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>My doctor said he could raise my sodium, but I told him that doesn't work for me as evidenced by the time I got the previous persons sodium rate of 144. I told him that the conductivity is what I need raised. He said he doesn't feel that has anything to do with it. <
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>Your jug trick the tech told you about is what I'll try next if my doctor and staff will listen and let me try it.<
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>Previously, when my condcutivity was 14.2-14-3, my bp might get in the 90's by the end of tx., but it did not bother me at all. I wondered how I'd feel if my conductivty was a little higher yet, because eventhough I felt good on tx, I still felt partly tired post tx. But like I said, if my conductivty went higher it would cause the high conductivity alarm to go off as the limits were set for 13.5, 14.0, 14.5.<
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>Some questions I have are: 1) With your increased conductivity, did you have a problem with alarms? 2) How long have you been on home hemo? 3) Did you feel a difference in your wellbeing from running 4 txs per week as opposed to 3? 4) Why do you run 41/2 hours per tx? 5) What is your weight? 6) Sodium of 149 is higher than anyone I've heard of. Is that just normal for you? 7) Have you ever run sodium modeling or UF profiling? What effect did you get? Fistula? 9) Can you ask the tech what your pH is? In-center pH is measured with a meter prior to tx. I also run on a FR2008H and in-center the pH is supposed to be 7.0.<
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>You are obviously an alert patient and your observations are a help to me. Glad you are having good txs since you found this key regarding conductivity.
