I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: cattlekid on November 27, 2012, 01:24:43 PM
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So I've been having some issues over the last few days with shortness of breath on exertion. My creatinine has also risen to 14, while my hemoglobin is only 8.2 on 17,500 weekly units of EPO. Iron stores are good. Albumin is a little low, phos, potassium and calcium are in range.
I just got back from the nephrologist where we decided that I needed more diasylate which of course means more time on the machine. I am not disagreeing, but I am curious to know if anyone has experienced the same with short daily home hemo with NxStage. I've been on it a year - has it stopped working for me?
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So I've been having some issues over the last few days with shortness of breath on exertion. My creatinine has also risen to 14, while my hemoglobin is only 8.2 on 17,500 weekly units of EPO. Iron stores are good. Albumin is a little low, phos, potassium and calcium are in range.
I just got back from the nephrologist where we decided that I needed more diasylate which of course means more time on the machine. I am not disagreeing, but I am curious to know if anyone has experienced the same with short daily home hemo with NxStage. I've been on it a year - has it stopped working for me?
Cattlekid,
I agree with your nephrologist.. Doesnt sound like you are receiving enouph dialysis. My creatinine first started out in the 7's when i first started NxStage. This was with the normal treatment they start everyone with...15L 2.5 hours. My nephrologist was quick to change the prescription. I am now on 25L, 5 hours, 6 days pwer week and my labs are absolutely wonderful. Creatinins hangs around 1.9, BUN 11, phos 2.9 and K 3.5.
Remember, you can never have enouph dialysis. I know non of us like being hooked up to that machine, but there is a balance where we are dialyzing enouph now in order for us to prevent some of the effects that can happen later in life from not enouph dialysis now. Its definitely a balancing act... Its just how much you want to balance more on one side than the other...
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There is absolutely no way I can do five hours a day. I am willing to do three or three and a half, but no more. I work full time and the only time I can do dialysis is in the evenings. I can't fit in five hours. I will be interested to see how my prescription will change in order to get up to 25 L. I will not do nocturnal for a host of different reasons.
My clinic visit is in two hours, so I'll report back with what we decide.
Cattlekid,
I agree with your nephrologist.. Doesnt sound like you are receiving enouph dialysis. My creatinine first started out in the 7's when i first started NxStage. This was with the normal treatment they start everyone with...15L 2.5 hours. My nephrologist was quick to change the prescription. I am now on 25L, 5 hours, 6 days pwer week and my labs are absolutely wonderful. Creatinins hangs around 1.9, BUN 11, phos 2.9 and K 3.5.
Remember, you can never have enouph dialysis. I know non of us like being hooked up to that machine, but there is a balance where we are dialyzing enouph now in order for us to prevent some of the effects that can happen later in life from not enouph dialysis now. Its definitely a balancing act... Its just how much you want to balance more on one side than the other...
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Hubby is a big guy...we had a hard time doing 30ltrs 6- days a week. Switched to 40ltrs 5 day's a week. He is able to run @ 500 so it works out to be 3.5 hrs. We added only 30 min of treatment time but the extra day off makes a huge difference.
It does sound like you need a little more dialysis but the whole point of doing it at home is you can be flexible. Going to the 5 day schedule made a huge difference for us.
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So we've decided to keep at the same Flow Fraction of 33 and up my disasylate to 25 L. According to the nurse, that should only add on about 15 minutes. I am staying with 5 days a week. I will be getting 50L SAKs shortly to make up a full month.
Depending on my next set of labs, we'll adjust the FF accordingly.
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I’ve started on FF35, 25L Flow 500 six days a week. Six days were too much for me since I work fulltime. My nurse switched me to 5 days a week and it helped a whole lot. However, my numbers started to drop. My nurse increased my treatments, FF40, 30L, flow 500. It added just 6 minutes more to my treatment. Immediately, I felt the difference.
Also, I don’t do the straight 5 days. I do 2 days take 1 day off, 3 days and take the other day off or vice versa; however, I put 5 days in per week. I just try not to take off 2 days at a time unless I’m out of town.
Hope this helps. 8)
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Sounds like you do the same schedule as us. We've found it gives a lot of flexibility.
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So we've decided to keep at the same Flow Fraction of 33 and up my disasylate to 25 L. According to the nurse, that should only add on about 15 minutes. I am staying with 5 days a week. I will be getting 50L SAKs shortly to make up a full month.
Depending on my next set of labs, we'll adjust the FF accordingly.
Cattlekid,
How long were your treatments before adding the extra fluid? How long are they now ? If your treatments are less than 3 arounds or there about... This is more than likely the reason for the high creatinine. Also, if your phosphorus is high as well as some of your other labs, you more than liikely are not receiving enouph dialysis ( time) It takes time for the molecules to equilibrate into the bloodstream. This is why time is such a big factor.
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I went from 2.5 hours max to now 3 hours max. Time usually ends up being about 15 minutes shorter because I usually have very small amount of fluid to take off.
After a couple of weeks of this new schedule, my creatinine has gone down. Kt/V has increased to 2.5, but the rest of my labs went in the toilet. Albumin, phos and potassium are all very low. My appetite is also decreasing. Neph, nurse and dietitian all agree that I need to just EAT. Apparently, I've been following the renal diet too strictly and combining that with a bout of depression has not helped the situation. So now, I have everyone's permission to be a little more liberal with my diet, with the caveat that I should eat smaller, more frequent meals and eat the protein component of the meal first. Have to get the albumin up.
Cattlekid,
How long were your treatments before adding the extra fluid? How long are they now ? If your treatments are less than 3 arounds or there about... This is more than likely the reason for the high creatinine. Also, if your phosphorus is high as well as some of your other labs, you more than liikely are not receiving enouph dialysis ( time) It takes time for the molecules to equilibrate into the bloodstream. This is why time is such a big factor.