I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Speedy1wrc on March 26, 2013, 05:15:07 PM
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I know this topic has come before, but in regards to pre-dialysis.
I have been back on dialysis now for over a year and have only now for the first time experienced this.
I just got my monthies back and everything is absolutely perfect except my PTH is actually low and my platelet count is also a tad low. The only other change was up-ing my EPO to try and get my hemoglobin back in line.
Electrolytes and metals are great. Potassium, phosphorus and even CO2 are also dead on.
Diet is the same as usual, no changes there.
I've given up on my nephrologist and my Home Hemo nurse is on vacation for Easter. There is someone covering, but I don't now her too well to bring up a random topic like this.
Anyone else having this WHILE on dialysis?
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When I had to switch back to in center from NxStage, I had the same thing happen. It's a sign of inadequate treatment. My labs all looked fine, too. I convinced them to up my pump speed, and it went away. While nothing else may look different for you, what kidney function you have remaining may be dropping just enough for this particularly annoying side effect to show up. You can ask about getting a better filter, increasing the pump speed/pressure or increasing time by a little bit.
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I have had this for the past week on D. My labs are a little off right now, so I thought that may be why. My PTH is low, potassium normal, phosphorus is on the high side of normal, but my CO2 is really low, so we changed my dialysate prescription. I am already taking 6 sodium bicarbonate tablets per day, so hoping the new dialysate will solve the problem. I know I am not much help, but at least you know someone else has a similar issue! I will ask my nurse tomorrow and see if she has any insight. I am maxed out on the pump speed, but am willing to add time if necessary.
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I am pretty much maxed out on pump speed too. I am processing around 87L over 3 hours at a speed of 500ml/min. I think I can drop my FF to 37 without having to change my dialysate goal. I think the net effect would be to increase time but otherwise everything else should remain the same, with icreased BVP. My labs and clearances are the best they've ever been, so I am slightly skeptical on this though.
I've been researching the side effects of EPO, but can't find a direct correlation yet.
I'm trying to find something that changed recently and that's about the only thing I can think of.
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I get it at the beginning of the treatment, but not always.. for me, it's the heparin given at the beginning that I taste.. I have candies to kill the taste, but it doesn't happen every time, and it doesn't last very long, 10 minutes at most
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Mine first started Saturday night which is my day off. So it had been a full day and a half since treatment, It started occuring mostly at night, but now I notice it in the morning also.
I've been checking on the EPO, but it only occurs in about 2% of patients and typically in much larger doses.
I've started rinsing with an antiseptic dental rinse on the odd chance there's something going on there.
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I never go by those percentages, because there's always that one in a million.
When I was a teenager, I was on a medication that was meant to prevent urinary tract infection. Within a month of taking it, I started having issues with "clouds" in my vision, and concentration issues where I would be unsure of why I was in a place, or sometimes unsure of where I was.. There were other symptoms too, but I don't remember them all. My mother said that I had every side effect listed with the drug, and she took me to doctor after doctor who kept telling her that there was no way this medication could cause all these things. One even said that it was a 1% chance that the drug could be causing them. I got to a point where I turned into a zombie. I didn't know who I was, where I was, I didn't respond to anyone who spoke to me, and I was hospitalized. I had been in for a couple of days when an older doctor who was working in the hospital that day saw me. Mom told him the whole story, and he finally gave the order to take me off the medication. By the next morning, I was back to my old self.
So, I must have been in that 1% that could have issues with the drug. It's also possible that you are in that 2% who can have that particular side effect with EPO. I'd ask to try a different drug, like Arenesp or just plain iron to help with your hemoglobin
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Sorry.... Just noticing this now... (Carer Brain!)....
Are you having Iron???... Whenever they gave Mum Venafor while on the machine, she got a nasty, metallic, taste in her mouth... She started to suck extra strong mints, and they really helped...
Hope you get over this soon... That's a dreadful feeling.....
Love to all...
Darth....
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Are you getting iron infusions during treatments?
That can cause the symptom you're describing.
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No Epo or IV iron for me, but still that metal taste comes and goes. Doesn't usually happen while on D, but later in the day or right before bed. Weird! Could it be a symptom of acidosis? Drawing more labs Monday, so will see if anything else is out of whack.
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Same symptoms here as Angie. Nothing during dialysis, but at other random times during the day.
Last Venofir was 3 weeks ago possibly. I do get a lot, but I would thing it should have dissipated by now? I do not get Heparin, I am allergic to it. One of the reasons I had so many complications post sugery back in 2006. I am getting my EPO IVP so I'm not sure Aranesp would be suitable. I was upped from 8,000 3X weekly to 16, 000 3X weekly. I don't recall my Venofir dose off the top of my head. I only get that once monthy when I go in for clinic.
I also am in the perecentile that gets the odd symptoms or reactions. Whenever I start a new drug I have to tell the Dr that I will ramp up slowly which usually eleicits a nasty look. At that point is when they tell me it just can't happen. sigh.
My next labs are Monday too, and I am very curious if they will show anything.
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I don't know what IVP is.. *G*
I was on Arenesp when I was on PD.. was on 120 units every 2 weeks.. since I've been on HD that's gone down to 60 units every 2 weeks
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IVP is IV Push. I push it in my venous access at the beginning of treatment.
I was on Arenesp prior to dialysis but now on Epogen.
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I get mine through the machine.. they have to push it slowly.. I think it has to take at least a minute.. I'm not sure.. they do it at the same time they hook up the venofer.. before I was on HD, I got it as an injection
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So I got my labs back today and might have a reason for the metallic taste. Neither the nurse or I know why, but we may know what.
All my labs are picture perfect except my platelet count is still horribly low. However, my hemoglobin has hit 10 for the first time in I can't even remember.
Two other items though popped up as high. My magnesium is high which is odd since it never has been before. And my aluminum is also very high. My nurse and I discussed my diet and what could be causing it, but can't put a finger on it. All the typical things to cause increases in those two are not things I eat or drink. so there still may be a mystery.
She's sending me tubes to redraw lab's next Monday so we'll see if the numbers are consistent or what gives.
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I will have to check my labs and see if they even tested my aluminum and magnesium levels. I have lost quite a bit of residual kidney function since last month. It hasn't bothered me much this week. I did have my first dose of IV iron today, and that leaves a nasty taste behind. Not the same as the metal taste, though. Ahhh, the joys of kidney failure. On a funny note, I was at the ER yesterday and the nurse was taking all my info...dialysis patient, PKD, blah, blah. She then asks if I have a stage for my kidney disease? I looked at her smiling and said 5. She says does that mean you are end stage renal? I smile again and say yes. Hello? Dialysis patient lol!
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Labs do not look at everything, and three hour dialysis will not clear blood of everything, particularly middle molecules. High pump speed achieves nothing, other than damaging a fistiula/graft. I am not sure why you are running so fast. Running slower is the way to go.
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noah...My RO system is working fine. I did water samples and dialysate samples at the same time. The aluminum level in the water has been tested 5 times in the last 2 months.
amanda...High pump speed actually increase efficiency. Not only does it process more L of blood, but it also increases the efficiency of the dialyzer K. Therefore increasing Kt/V
Angie...My center does a full panel quarterly. It just so happened this was the time. My last aluminum in January was fine but my magnesium was a bit high. I cut out the magnesium supplements and had it re-tested in mid March and that was fine then. Venefir does leave a weird taste in your mouth, I don't know how to explain it either, but it's sure there. I am prepping for surgery tomorrow and printed up my history, med list and Dr list. We'll see how many of the people talk to tomorrow morning will actually read it. No, unfortunately not that surgery.
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1wrc, I accept your argument but I would prefer to process more blood by increasing time on machine fir the reasons I gave, which is what I intend to start doing in a couple of weeks time. just need the training on the heparin pump.
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Looks like Speedy1wrc had symptoms and elevated Aluminum 2 months before NxStage reports problems with their SAKs. When did this really start and what type of quality control is in place.
I also had a severe metallic taste at the time my aluminum levels were at their highest AND the aluminum taste worsened as I did my dialysis. I suspect that was some of my own symptoms with this whole debacle.
But looking at this thread, I must question the dates and lot numbers involved. It seems it started quite a bit before April 2013 which is the earliest reported in the voluntary recall by NxStage. We have yet to hear the entire story but we deserve that whole story.
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Looks like Speedy1wrc had symptoms and elevated Aluminum 2 months before NxStage reports problems with their SAKs. When did this really start and what type of quality control is in place.
I also had a severe metallic taste at the time my aluminum levels were at their highest AND the aluminum taste worsened as I did my dialysis. I suspect that was some of my own symptoms with this whole debacle.
But looking at this thread, I must question the dates and lot numbers involved. It seems it started quite a bit before April 2013 which is the earliest reported in the voluntary recall by NxStage. We have yet to hear the entire story but we deserve that whole story.
You may be on to something.
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That's awful if you got bad product. I hope you get answers.
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I really should read my own posts more often. Lol!
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Here is an article all dialysis should be familiar with on the lack of evidence for GI exposure. In other words, high aluminum levels in dialysis patients is ALWAYS from the dialysate with direct membrane contact during dialysis.
http://www.biomedcentral.com/1471-2369/12/20
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I needed to read that. Thank you!