I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: neenie43 on December 30, 2006, 06:06:14 PM
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In July, my 71 year old mother was diagnosed with renal failure due to an antibody (anti-gmb) attacking her kidneys. Since starting hemodialysis, she has developed severe itching (especially at night), confusion, delusions and hyperventilation. Her phosphorus, potassium, etc. levels are in the acceptable range. I've contacted her nephrologist, but nothing he suggests seems to help. She had a brain scan, which was negative for Alzheimer's disease. I've tried benadryl and every OTC anti-itch cream, but she still scratches herself until she bleeds. She has become so confused that she is unable to care for herself, and recently started having delusions. She also started hyperventilating last week, which the doctor thinks is due to nerves.
Nothing I do seems to help and I don't know what to do anymore. Does anyone have any ideas?
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Hi neenie, I wish i knew what to tell you, i do know that when i have the itchies it is from my phosphorus being too high, have you checked to see if maybe she is having an allergic reaction to either some medication or something she is eating? I hope you find a cure for her soon, i know she must be miserable with all that is going on with her. Please keep us informed on what they find, until then, good luck to her and to you. Dont forget, we are here for you (and her) for support as needed :grouphug;
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Itching seems to be a side effect of kidney failure...with dialysis sometimes goes away same as confusion and depression....ask your med team to show you the lab reports...some numbers will be out of wack...then go after those....
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Did anyone tell you that it is possible to be allergic to the fibers used in the dialysis filters? I just started a couple of weeks ago, and I noticed that particular bit of information was no where to be found in the mostly useless info packet they gave me. I'm not, but I know there are a few people on here who have problems with it - maybe they can offer more suggestions.
Sorry I can't help more.. .
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Jbeany is right. Have them put her on a nonreuse dialyzer and have one that has different fibers. I speak from experience. My center tried to kill me off in 2004 with the allergy to the fibers or renalyn in the dialyzer. I told them they were making me sick! Have it checked out immediately.
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Jbeany is right. Have them put her on a nonreuse dialyzer and have one that has different fibers. I speak from experience. My center tried to kill me off in 2004 with the allergy to the fibers or renalyn in the dialyzer. I told them they were making me sick! Have it checked out immediately.
kitkaz
could you explain more-exactly what kind of sick you got from the filters? What did they do to you?
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During my first few years on dialysis, I suffered from extreme itching, but all my laboratory values were in the normal range. 25% of all itching in dialysis patients has no explanation traceable to any chemical imbalance, but it is very real, even though it remains unexplained. I experienced some relief through the simultaneous application of anti-itch cream and then anti-itch powder on top of the cream.
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Jbeany is right. Have them put her on a nonreuse dialyzer and have one that has different fibers. I speak from experience. My center tried to kill me off in 2004 with the allergy to the fibers or renalyn in the dialyzer. I told them they were making me sick! Have it checked out immediately.
kitkaz
could you explain more-exactly what kind of sick you got from the filters? What did they do to you?
Sure, Here goes. I felt really awful. A kind of really tired feeling all the time, then I ran fevers after dialysis essions that ran up to 102. I had pain in my chest when I breathed, it was not big pain, but a little pain. My lymph nodes were enlarged according to X-rays. I felt like I had the beginning of the flu, but never got it. Aching, weird feelings.
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I would suggest a few things.
First, go to www.epocrates.com and sign up for a free account. That will allow you to enter all of your mom's medications. Look for side effects and adverse reactions to see if they match your mom's symptoms. Also run a multicheck. It checks for drug interactions. If you find something that you have suspicions about, print it out and ask your nephrologist about it.
Also, all the symptoms you describe can be caused by inadequate dialysis (uremia), but not certain because there are many other things that could be the cause. If your mom is on SSRI's (prozac, celexa, Paxil, zoloft, etc.) ask your doctor about the possibility of serotonin syndrome.
Good luck.
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my husbands symptom is vomiting- it has been going on since he started dialysis back in April-in particular he vomits withen 12 hours of dialysis,sometimes he can't keep anything down for the whole next day.The thing is-the first 5 months-until september-October,he was vomiting up almost every single thing he ate,he had uncontrollable vomiting-and despite being in the hospital 20 times for uncontrolled vomiting,they never really figured out why he was doing it,he would get all drugged up on dilatin and ativan,and an anti-nausea-AZAMED,and after a week it would slow down to a stop at the hospital-then they would send him home and within three days-we would be back at the ER for the same thing-his BP would go out of control like 205/120-he would be vomiting in long spasms.,and they would start the drug thing all over.Now during this time we had a terrible nephrologist who would not listen,she kept saying it was psychcological,we thought he was on way to many BP drugs-he was on like 8 different one at the same time.We fired her and found another one ,but not before asking his GP to monitor his BP. he switched him to 3 meds,one of which is a patch and got that squared away pretty quickly.but he was still vomiting daily.he has had every test from one end to the other,in October he got pneumonia,and they said his gallbladder was bad from all the puking,so they took that out while he was in the hospital before they let him come home.
After he came home at the begginning of November he was still puking daily,but could eat a bit-just stayed very much medicated.A week later,his Pneumonia came back-this time he had an infection too they found in his upper intestinal tract which they used vancomycin to treat,for the whole month of November.When he finally came home in Dec,he had stopped puking.He is still on diflucan since he came home-but its been 5 weeks he has been homethe first three weeks he did not vomit at all,now he does 4 or 5 times a week. The dialysis center and his Dr's have all thrown up there hands-they just don't know why.One speculation was that when he had the gallbladder surgery,that Dr said his abdomen was a mess with scar tissue from the nephrectomy he had in April-so Dr basically went in and cleaned it all up,and Dr said maybe just the disruption of having people rooting around would make him puke for awhile-but at this point-its like they don't know anymore-they know what it isn't.Which is why him and I were wondering if it could be the filters,and or the fact that they re-use them.Or is this just the way it is for some people? His labs are great.
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I think, glitter, that I would insist they at least try a different filter. Surely it would be the simplest way to eliminate at least one cause. :grouphug;
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It isn't that easy-they stock one kind,and they re-use them.they are not open to the idea of a specail one just for him-and the three closet centers are all owned by them and the next one is really far away.and of course,it might not be that too. they say if it was the filter-he would be sick immediatly after dialysis-which sometimes its the next morning and evening.I am at a loss....
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Ah - perhaps you need to borrow kitkat's big stick? Ask them if they ever talk to the sales reps from the other companies, or get samples of anything. Surely they could try.
Is he worse on the days he re-uses the filters?
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they re-use them for a long time-the filter he is on is on the 13th use. and they complain that his filters don't last as long as other peoples do.I will ask about samples or sales reps,they do not seem very open to ANY suggestions we make,and they have not been forthcoming about anything really-we have to pull every fact out of them.they seem resentful of us asking-like we are trying to second guess their job,we are just trying to learn-its frustrating.My husband switched to nights recently(evenings) and the staff seems a bit more relaxed,I will ask his neph if he can intercede and at least try.
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Here if a patient agrees we reuse the filter up to 20 times max. I have heard some units use them up to 40 times.
Even though his labs may be in good order the itching and confusion and stuff may be coming from excess toxins building up in the his body and that his body is having a hard time adjusting to them.
Even though labs are good, one needs to remember that dialysis is only making up a very small portion of what the kidneys actually process and that labs alone do not account for all the other things that are affected by toxins.
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I can't wait to go in tomorrow and find out how many times.....my filter...has been used. So what I am hearing is.......20 times should be the limit?!? I remember when I started signing something that stated they could "reuse" the filter....I questioned it at the time and they said....everyone in the unit...reuses theirs.
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I can't wait to go in tomorrow and find out how many times.....my filter...has been used. So what I am hearing is.......20 times should be the limit?!? I remember when I started signing something that stated they could "reuse" the filter....I questioned it at the time and they said....everyone in the unit...reuses theirs.
All units are different.
Here reuse filters are first tested for capacity. They are then labeled with black permanent marker with the patients name and then also a sticker to tell what the capacity is and what the min. capacity will be allowed based on initial capacity. After each use it is cleaned and a new sticker is put on showing patients name again and it shows what the capacity of the filter is and when it was cleaned and that it passed the test. If the filter fails the test or falls below the min. capacity it is rejected and a new one is used. A patient is free also to reject it if they wish.
It is said as long as the filter passes these tests and is not full of clotted fibers from a prior use it can be used indefinitely.
My unit however says they will not use a filter more than 20 times.
Here if a patient wants a bigger better filter they have to go to reuse because of cost.
Last I was told was the filter I use is $28.00. If it was single use only that is $364.00 a month just for the filter. That doesn't seem like alot but when you relate that to what Medicare pays for treatment which is less than $2000 a month for treatment here. Also Medicare doesn't pay more for single use vs reuse to my knowledge. The difference is quite a bit to a unit when dealing with 100's of a patients. Especially here where the unit is non-profit.
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I can't do reuse anymore. The first couple of years I was on dialysis it was okay, but I built up a resistance to either fibers in the dialyzer or the renalyn that was left in the dialyzer. I know they will tell you it is trace amounts, but an allergy is an allergy. So no more reuse and they have me with my own dialyzer in the unit. I make the center director sigh!
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Last I was told was the filter I use is $28.00. If it was single use only that is $364.00 a month just for the filter. That doesn't seem like alot but when you relate that to what Medicare pays for treatment which is less than $2000 a month for treatment here.
I don't think $364 is a lot if it means the patient isn't puking their guts out on a daily basis! How much is our quality of life worth?
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In 2002, all of the U.S. Fresenius clinics switched to single-use (no reuse) dialyzers. They have more than 1,200 centers here in the U.S.
My dialysis center (which is an independent non-profit) stopped its reuse program about five years ago and today we use some of the best high flux filters in the US. Back in the 'dark days' they would reuse filters up to 40 times, when they could! During those years I asked my Nephrologist to limit the reuse to 9 times, and he agreed.
I heard that other centers actually gave patients more heparin to get more use out of the filters.
One thing you might ask the staff to do is flush the filter with an entire 1L bag of saline, not just re-circulate. In fact, even today without reuse, I prefer the filter to be flushed with 1L saline, as well as flush the blood lines (especially the arterial line) and even the tubing attached to the needles with a 10 cc syringe of saline (a wet stick).
As for itching, a fellow patient used a UV sun lamp every day for just a few minutes and found relief. That is as long as your phosphorus and calcium blood levels are within normal limits. ;)
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Last I was told was the filter I use is $28.00. If it was single use only that is $364.00 a month just for the filter. That doesn't seem like alot but when you relate that to what Medicare pays for treatment which is less than $2000 a month for treatment here.
I don't think $364 is a lot if it means the patient isn't puking their guts out on a daily basis! How much is our quality of life worth?
Well what I said on that was not a direct relation to the person being sick.
Yes there is a quality of life issue I agree with you on that. In this case of the person being sick it was said he was sick from day one of dialysis. At least that is what it meant to me when it stated that the person was sick from the beginning.
So if that was indeed the case, then reuse wouldn't play into it as the filter was brand new on day one right?
Some people are hypersensitive to the filters.
In any case the unit should be doing something even on a trial and error to find out if it is the filters or not.
I might add they make modified cellulose filters that I believe are suppose to help with sensitivity.
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In 2002, all of the U.S. Fresenius clinics switched to single-use (no reuse) dialyzers. They have more than 1,200 centers here in the U.S.
My dialysis center (which is an independent non-profit) stopped its reuse program about five years ago and today we use some of the best high flux filters in the US. Back in the 'dark days' they would reuse filters up to 40 times, when they could! During those years I asked my Nephrologist to limit the reuse to 9 times, and he agreed.
I heard that other centers actually gave patients more heparin to get more use out of the filters.
One thing you might ask the staff to do is flush the filter with an entire 1L bag of saline, not just re-circulate. In fact, even today without reuse, I prefer the filter to be flushed with 1L saline, as well as flush the blood lines (especially the arterial line) and even the tubing attached to the needles with a 10 cc syringe of saline (a wet stick).
Maybe all of us should do some type of consumers report type of thing and compare the various filters on the market.
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So if that was indeed the case, then reuse wouldn't play into it as the filter was brand new on day one right?
Some units actually put each new filter through the reuse process as well.
Maybe all of us should do some type of consumers report type of thing and compare the various filters on the market.
:beer1;
Me: Fresenius Optiflux-180 filter--without reuse
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:beer1;
Me: Fresenius Optiflux-180 filter--without reuse
Gambro R-24--reuse
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Hey guys.........JUST got back from dialysis. First thing, I ask my tech what the number is for re-use on my filter...........she says........47.........I say....isn't that a "bit much?".........she sends in the rinse and re-use tech, who tells me they test each one after use....and they use them up to..........75...........TIMES!!!!!!
Epoman will LOVE this....it is his most favorite place....DAVITA!!!!
NOW WHAT?????!!!!!!
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Hey guys.........JUST got back from dialysis. First thing, I ask my tech what the number is for re-use on my filter...........she says........47.........I say....isn't that a "bit much?".........she sends in the rinse and re-use tech, who tells me they test each one after use....and they use them up to..........75...........TIMES!!!!!!
Epoman will LOVE this....it is his most favorite place....DAVITA!!!!
NOW WHAT?????!!!!!!
I have heard that some do continue to reuse them as long as they pass the capacity test.
However there is no way they should be reusing that many times :o Because most filters really start reducing in their ability to reduce microglobulin levels.
The filter I use is one of the ones at the higher end of removing lots of microglobulins and then continues consistently to remove that same amount of microglobulins into the 15-20 reuse range.
Some reuse filters really drop fast in microglobulin levels just after 5 reuses.
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TELL them that you do not want to reuse after a certain number of times. They have to comply with what you want.