Catheter Care

Anonymous
August 9, 2009 at 1:12 am

[COLOR=black]Hello Rhonda and Ryan,[/COLOR]
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[COLOR=black]Based on what my medical center does, anyone with a catheter must have it flushed at least once a week, by which I mean about every 7 days (about 20% of the time, I will go 8 days, but only once was allowed to stretch it to 9). Based on Ryan’s schedule, he should get it flushed once between treatments.[/COLOR]
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[COLOR=black]The blood center (probably a hemodialysis unit) almost certainly treats mostly people with kidney disease. Dialysis patients typically receive dialysis 2 or 3 times a week, but there might be the occasional patient who receives dialysis 6 times a month. Therefore, they would not have patients who go longer than 5 days between treatments. [/COLOR]
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[COLOR=black]I understand having plasmapheresis (PP) every other day over 10 days (I take it that was six PPs); that is roughly what I did when I first started. However, I don’t know why Ryan would be scheduled for a single PP every other week. I am not saying that it is wrong or bad, just that it is outside the protocols I have seen. [/COLOR]
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[COLOR=black]A typical PP is what is called a “1 volume exchange.” That means a volume of plasma equal to the (calculated) amount of plasma in your body is removed during the treatment. However, because the PP is a continuous process, only something slightly over 50% of your original plasma is actually removed. The rest is the human albumin solution that has been circulated into your body. [/COLOR]
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[COLOR=black]By doing so, you have removed slightly more than the half of the bad stuff that leads to the CIDP symptoms. However, with the second PP, you remove about 50% of the remaining 50%, so at the end of the second PP, you have removed about 75%. At the end of 6 treatments, you would have removed about 98% of all of the bad stuff. It actually doesn’t work that well (you start to make the bad stuff again after each PP), but you get the idea. [/COLOR]
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[COLOR=black]When I was experimenting with my treatment regimen, we tried just PP for a while. After each round of 5 PPs, I did fine for about 12 days, and then started to decline. I could last about 15 to 17 days, but then needed another round of 5. My point is to monitor Ryan’s condition closely for several weeks. If he declines at all, ask the neurologist to schedule more than a single PP every other week. Keep increasing the number of PPs each round until there is no decline, up to 5. Keep that number of PPs and then try to increase the amount of time between rounds. Once you have reached something like 6 to 10 weeks between rounds, then try reducing the number of PPs in each round. [/COLOR]
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[COLOR=black]There are diminishing returns to each treatment so there is almost no value in going beyond 5 treatments. At a GBS-CIDP Foundation symposium (the one in 2006 in Phoenix), one of the doctors said that there was evidence (I think it was for GBS, but it should apply to CIDP as well) that 4 PPs were better than 3, but 5 PPs did not seem to be better than 4.[/COLOR]
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[COLOR=black]I hope this helps.[/COLOR]
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[COLOR=black]Godspeed in your treatment, Ryan.[/COLOR]
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[COLOR=black]MarkEns[/COLOR]
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