HELP...Any ideas?
My mother is 78 years old and has been a hemodialysis patient for about three years. In the last several months she has developed a mysterious and scary reaction to her dialysis treatments that no one can explain.

Within minutes of treatment completion, and sometimes even before her dialysis is completed, she becomes very restless and anxious. She seems to be in a kind of �mental fog� and her acuity is decreased. She may respond only to very direct conversation, and even then she cannot describe her pain or discomfort. She often goes into a �loop� of repeating a single word or short phrase, not really aware of what is happening around her. More than once she has tried to leave a moving car, unbuckling her seat belt and unlocking the door, thinking she has arrived home.

Her exhalations often seem labored and accompanied by moans, and at other times by a sort of sobbing at the end of the exhaled breath. Even though she should be extremely tired and exhausted after dialysis, her body seems to be in inner turmoil as she gets up and moves from chair to chair around the kitchen table, moaning and gasping all the while. It often takes several hours before she begins to relax and maybe nap. Her condition is sometimes closer to normal after she awakens; but the �mental fog� seems to continue to some degree for several more hours, and she has almost no memory of the period immediately after dialysis.

Strangely, she does not have this reaction whenever she dialyzes at a different facility. The doctors and other staff have no idea what may be happening. (I have never heard of other patients at the same facility having similar �reactions.�)

Anyone else ever see/experience this??? Thank you for any and all responses!!!

I had a similar problem when I started dialysis, which was so distressing that I asked to be tested for diabetes-- I had symptoms of low blood sugar immediately after dialysis, which lingered until I had something to eat. I don't have diabetes, but I'm very sensitive to electrolyte imbalances-- maybe that's what's happening. Dialysis doesn't just remove toxins, it also removes a lot of 'good stuff', too.

Electrolyte imbalance seems to be a logical choice.... thanks to dialyzindar for pointing that out.

Has your Mom been evaluated by her MD?

What was her cause of renal failure?

Carol

quote:

Originally posted by Carol Isaac MacKusick:
Electrolyte imbalance seems to be a logical choice.... thanks to dialyzindar for pointing that out.

Has your Mom been evaluated by her MD?

What was her cause of renal failure?

Carol

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Thank you for responding, Carol.

Age and other conditions complicate my mother�s treatment. Thankfully, she is not a diabetic, though. She does have short bowel syndrome, and receives TPN each night. (In a way, this gives her an advantage over other dialysis patients in that some nutritional elements may be controlled directly, rather than through diet.) She has had an ileostomy for over 12 years, a result of her successful fight with colorectal cancer. That battle in 1981 included use of both chemotherapy and radiation, and the radiation left her bladder internally scarred. Hence, she is prone to recurrent UTI�s. Also having to deal with a couple vertebral compression fractures, her pain control is via fentanyl patches, with morphine pills for breakthrough pain.

She had faced numerous kidney infections prior to all the above, and underwent a nephrectomy in 1980, losing the kidney to infection and multiple stones. None of her doctors have ever said what caused her remaining kidney to fail, if they even know. For
several months she suffered the effects of her kidney failing, and her then primary physician didn�t diagnose it. Finally, she was �pawned off� to the university hospital here in town and the nephrologists diagnosed her. Now she has no primary, but the nephrology team tries to address all issues that arise in her care.

My mother often has trouble with her BP bottoming out during dialysis (80�s � over � 40�s), meaning not enough fluid can be removed those times. The center has tried �modeling� to remove more fluid early in the session before her BP drops. We have made several visits to the ER post dialysis when she goes into her episodes. They always seem to be very thorough, but somehow end up focusing on only the most immediate needs and don�t follow through on investigation of the cause. Maybe they are simply baffled. The last several months have seen her skin take on an almost coppery, metallic look. Suspected insufficient adrenal function has been ruled out. During her episodes (if prodded) she complains of feeling very sick. She has recently been Dx�d with stomach hernia(s), and doctors think there may some ischemia in that area during dialysis.

Doctors say her labs look very good; but those labs probably include just a portion of all her electrolytes. Her symptoms do suggest electrolyte imbalance, which I�ve seen in the past before she was put on TPN; but doctors say that�s not the problem. Her phosphorus level was low (unusual for a dialysis patient) until her TPN was recently adjusted. That could have effected her ATP production, hence energy level and numerous other things.
We�ve also considered blood glucose level, though that should be kept stable during dialysis.

The baffling thing is that she seems not to have these episodes when she dialyzes at another facility . . . something we would not even know had she not been treated (inpatient) at the other place. Doctors say there is virtually no difference between the two places in equipment or protocol, and the filters used should be comparable. It�s so hard to see a loved one go through this, not knowing the cause or being able to explain it. She is now on a very long waiting list to transfer to the other dialysis unit.

Thank you again . . . I just can't give up on trying to find an answer to this. Your help is appreciated!

Lin, that's an interesting idea-- if she doesn't get sick at other dialysis units, maybe she's getting a brand new dialyzer there, and she's using a reused dialyzer at her home unit?

I used to have just the opposite problem when I went to a unit in Florida-- I got sick there because they used new dialyzers and didn't run any saline through them before use-- I had "first use syndrome" after every treatment, but didn't get sick at my unit, where they did reuse.

There has to be a reason why this woman is getting a reaction when she's at her home unit, but not when she goes someplace else... it could even be something in the water system, or how they mix the bicarb. We need detectives in the units!

Checking into the electrolytic make up of the dialysate should be easy. Just ask the technician's or nursing staff the make up of the bath (things like sodium, potassium, calcium, dextrose) than call the other facility and check what bath they were using. It will probaly be the same (prescription) but if for some reason it is different you may have a clue. It would unusual that a reuse reaction or single use first use reaction would occur during the end of the treatment. Does she have a catheter? I have seen weird things happen when they return blood on catheter patients? The only other thing that might require some investigation is the water treatment system. Ask to see the last water analysis and see if anything is high (limits should be posted on it) Aluminum and other contaminants can cause a dementia type episode. Keep us posted and good luck.

Thank you, AWrench, and all others who have responded. Your thoughts and ideas are appreciated...

As far as the catheter question, the answer is, "Yes." She does have a central line (Groshong, specifically) for overnight feedings via TPN. We are always on the lookout for infections in that area.

I shudder when I think how much her body chemistry has been manipulated, and then I wonder if trying to keep her textbook-normal in balance may not really be what is "normal" or optimal for her. For a long time her doctor tried to increase her sodium level to normal range. After attending a conference he decided to ease off and let her slip slightly below the norm, which in turn decreased the thirst she experienced and decreased her fluid overload experiences.
Maybe what dialysis patients need in addition to their doctors is to also have a personal "chemist" with the responsibility and time to scrutinize the details of treatment!

I agree that treatments need to be individualized-- you can't tell me that a 90-pound woman needs as much dialysis as a 200-pound man!

Whenever I ask my doctors about anything, all I get is, "Everyone is different!" And yet, we're all doing 4-hour treatments... doesn't anyone wonder about that?

Unfortunately dialysis is not a precise science, although it has come a long way in the past twenty years. The reason most patients are on four hour treatments is that it takes that length of time to remove "heavier" molecular weight contaminants. So even if you gain relatively low fluid amounts it still takes time to remove these contaminants. The best thing is to keep a "dialysis journal" include pre post weights and bp's and general feeling. This way you can fine tune your treatments.

Lin is it unusual that a first use reaction occur at the end of the treatment (not impossible) you have to remember that during the course of a three to four hour treatment you could be exposed to contaminants that "build up" and cause the problem. Extra saline does help also if the staff use the recirculate mode on the machines to put some pressure across the membrane. The first use or pyrogenic reactions that I have seen at the end of the treatment occurred in catheters. Also it is uncommon for them to cause confusion and Mark S did not mention anything about high temp,chills, fever. That is why I tend to rule out first use, disinfectant, or pyrogenic, reactions.

I would like you to read the following regarding a possible cause of your mom's "Mental Fog." It may not be the problem, but it's worth a look.

Good Luck!


Dialysis encephalopathy

Dialysis encephalopathy is a syndrome specific to dialysis patients that was first described by Alfrey et. al. in the early 70�s, and since then over the years many reports from other dialysis centers around the world have described similar findings.

There is a characteristic set of signs and symptoms associated with dialysis encephalopathy. There is also an equal distribution among the sexes and ages, but the geographic distribution is not even.

Dialysis encephalopathy has a distinct set of characteristics. Difficulties with communication are often the presenting symptoms, followed by cognitive and motor impairment and alterations of character. Disorders of speech such as dysarthria (difficulties with articulation), dysphasia (poor speech coordination), stammering and stuttering, are characteristically the first signs of the disorder. Concomitantly, a patient often suffers with impairment of memory and depression in addition to paranoid ideas. Myoclonic jerking and seizures are also seen. Some patients have been described with dyslexia (impaired reading, writing, and spelling, without impairment in the recognition of words), dyscalculia (inability to perform mathematical problems), dyspraxia (poor performance of coordinated movements), and dysgraphia (inability to write), and worsening of attention span and a deterioration of memory are frequently seen.

Initially, these symptoms appear intermittently and infrequently, but are most noticeable immediately after dialysis. Patients are often frustrated and disturbed by these symptoms. As result, they may often curtail their conversations in order to avoid embarrassment. (Please go to this web site if you want to read the rest of this. http://web.indstate.edu/thcme/anderson/vlf.html)


I don't mean to scare you with all of this, but I think it's a good idea to rule it out. At least bring it to the attention of your doc.

By the way, was your mom taking Amphogel in the past? Or any other medications that contained Aluminum?

For reasons unknown the link I provided does not work. If this link doesn't work then just go to Indiana State University Web Site. Then go to the section on diseases.

You'll see it there.

http://web.indstate.edu/thcme/anderson/disease.html

Thanks for your input, RNinLA . . . . I will check that out. She has not been on Amphogel, or any other med containing aluminum. Some of those symptoms you mentioned do seem to match up, including her jerking motions (extremities).

Is there any standardization of dialysis patients labs, particulary relating to which specific eletrolytes are checked? Or is this where the neph has to get involved to request specific "panels" based on (suspected) patient needs? OR...Is this another area that Medicare gets involved in holding down the cost and so only pays for the "one-lab-fits-all" for patients?

Lin,
My intentions were not to presume that I have "all the answers" I have been doing this (technical work) for twenty years and still are stumped by problems. Unfortunately it is a very individualized process, what affects one patient does not affect another, that is the challenge we face as dialysis professionals. I was merely trying to help Mark S eliminate things so he could solve this and make treatments for his mom easy and more productive. That's why I suggest all patients keep a journal, don't leave things to memory because memory isn't always reliable and sometimes it doesn't seem "that bad" a few days later. Sorry about the dialysis police maybe you can have the other person post on this sight, I will be checking. AWrench

Try having the staff administer oxygen during treatment. I have seen patients with similar symptoms respond nicely with with this. Perhaps it improves oxygenation to the brain and relieves hypoxia that may be associated with some patients on hemodialysis. Your facility should have O2 on site.
By the way RNinLA nice article on dialysis encephalopathy. I'll have to do some more reading on this!