kindeys and memory connection
August 30, 2011 7:08 PM Subscribe
Recently I was diagnosed with End Stage Renal Disease and learned that all the toxins in my blood explains why I've been forgetting things. I read there may be a link to kindney failure and memory loss and doesn't matter that I am on dialysis getting the toxins out. So I'm just wondering how bad this is going to get as far as memory loss is concerned? Wondering if anyone knows people on dialysis and they've become forgetful?
Up until I was hospitalized I was struggling at work for a couple weeks, forgetting entire conversations I had with people. And even worse, in my mind I thought I completed certain tasks, but evidence showed I never even touched em, everyone thought i was going crazy. Since I've been out, I would go to my moms to go get something but totally forget what it was when I got there or go to the store and can't remember what I went to buy. These things are minor now, but I am worried it will get worse from here on. I don't want to be the crazy guy.
Up until I was hospitalized I was struggling at work for a couple weeks, forgetting entire conversations I had with people. And even worse, in my mind I thought I completed certain tasks, but evidence showed I never even touched em, everyone thought i was going crazy. Since I've been out, I would go to my moms to go get something but totally forget what it was when I got there or go to the store and can't remember what I went to buy. These things are minor now, but I am worried it will get worse from here on. I don't want to be the crazy guy.
I don't have a direct answer for you, but have you looked into joining the community over at Kidneyspace? I'm pretty sure you'll find people there that can answer more authoritatively. I've poked around there as I'm at the early stages of possible kidney disease associated with other issues I've been dealing with.
Anecdotally, I think memory issues come part and parcel with active chronic illnesses. I know that's been the case in my situation.
posted by michswiss at 7:31 PM on August 30, 2011
Anecdotally, I think memory issues come part and parcel with active chronic illnesses. I know that's been the case in my situation.
posted by michswiss at 7:31 PM on August 30, 2011
I don't mean to frighten you, but I think you should think seriously about designating people to remember things for you, hound people on your behalf, and if at all possible, remain there with you whenever you're admitted somewhere for treatment. Alternately (or in addition), you should make sure those caring for you are keeping strict written records of everything that's done—or at very least that you're immediately writing down everything that is done or that you're told while you're awake.
I haven't known anyone personally who's gone through what you're going through, but I used to sit near someone at work who at one point ended up having multiple conversations with hospital staff on behalf of someone who was, and it was really amazing just how dense some hospital staffers seemed to be about the memory loss thing—they persisted in asking the affected person things like what medications he'd already taken that day, what other medications he was on, what his blood levels were at last reading, whether he'd eaten, etc., even though he wasn't able to reliably answer and had already designated this other person to speak on his behalf.
From what I could tell, one of the only reasons the people caring for this person didn't completely screw things up was because he had an advocate, the person on the other end of the phone whose conversations I was hearing, who made sure to keep calling him and his nurses and doctors to ensure that they were all on the same page about his blood levels and medications. The person I overheard basically was getting to the point where she was having to say, "What part of 'He doesn't remember what medications he's taken or needs to take, so you need to call me to make sure' don't you understand?"
posted by limeonaire at 7:44 PM on August 30, 2011 [2 favorites]
I haven't known anyone personally who's gone through what you're going through, but I used to sit near someone at work who at one point ended up having multiple conversations with hospital staff on behalf of someone who was, and it was really amazing just how dense some hospital staffers seemed to be about the memory loss thing—they persisted in asking the affected person things like what medications he'd already taken that day, what other medications he was on, what his blood levels were at last reading, whether he'd eaten, etc., even though he wasn't able to reliably answer and had already designated this other person to speak on his behalf.
From what I could tell, one of the only reasons the people caring for this person didn't completely screw things up was because he had an advocate, the person on the other end of the phone whose conversations I was hearing, who made sure to keep calling him and his nurses and doctors to ensure that they were all on the same page about his blood levels and medications. The person I overheard basically was getting to the point where she was having to say, "What part of 'He doesn't remember what medications he's taken or needs to take, so you need to call me to make sure' don't you understand?"
posted by limeonaire at 7:44 PM on August 30, 2011 [2 favorites]
By the way, as I already mentioned, I definitely don't know the person in question mentioned above, nor do I know their specific condition. And I want to be clear: I'm recalling on second thought that the person's condition may actually have been liver failure, as I remember there being some discussion of blood ammonia levels. From what I'm seeing out there, it looks like similar things can happen to one's memory regardless of whether they're experiencing kidney failure or liver failure, given that things aren't being filtered out of the blood the way they should be—but my account is completely anecdotal and secondhand, and you should definitely talk to experts and/or people in a community specifically focused on your disease to know more about what to expect.
The one thing I really took away from overhearing these conversations, though, was the importance of good record-keeping and family advocacy—I don't think the guy in question always forgot things, but it happened enough that he and those close to him knew his memory was unreliable, a fact that they found difficult to impress upon medical staff.
posted by limeonaire at 8:05 PM on August 30, 2011
The one thing I really took away from overhearing these conversations, though, was the importance of good record-keeping and family advocacy—I don't think the guy in question always forgot things, but it happened enough that he and those close to him knew his memory was unreliable, a fact that they found difficult to impress upon medical staff.
posted by limeonaire at 8:05 PM on August 30, 2011
I was just thinking about this an hour ago. I have ESRD and I'm on hemodialysis, though my memory problems aren't as bad. I mostly have trouble with specific types of long-term recall, plus trouble concentrating. Sometimes my mind goes blank and I just can't get it to work on anything useful for hours. Kidney failure seems to affect everyone differently.
Are you on any medications that might have mental side effects? Blood pressure medications? Are all your labs in good shape, particularly hemoglobin? Other things, like high PTH, can affect nerves and sometimes brain function. Do you notice if it's better or worse after dialysis? Hemodialysis is stressful on your body chemistry, and it can cause plenty of problems on top of the ESRD. All things to go over with your nephrologist.
Is a transplant possible for you? These types of memory problems usually go away after a kidney transplant.
In the meantime, I Hate Dialysis is a great forum for support and talking with other people who have the same problems.
Good luck. I hope you can find a way to lessen your memory loss or its effects on your life.
posted by WasabiFlux at 8:13 PM on August 30, 2011
Are you on any medications that might have mental side effects? Blood pressure medications? Are all your labs in good shape, particularly hemoglobin? Other things, like high PTH, can affect nerves and sometimes brain function. Do you notice if it's better or worse after dialysis? Hemodialysis is stressful on your body chemistry, and it can cause plenty of problems on top of the ESRD. All things to go over with your nephrologist.
Is a transplant possible for you? These types of memory problems usually go away after a kidney transplant.
In the meantime, I Hate Dialysis is a great forum for support and talking with other people who have the same problems.
Good luck. I hope you can find a way to lessen your memory loss or its effects on your life.
posted by WasabiFlux at 8:13 PM on August 30, 2011
I agree with limeonaire and would add that, regardless of the potential for memory loss or other problems, if you have end-stage anything, you need a committed advocate to stand up to all the medical personnel and situations you're going to encounter for you. You're going to get tired and washed up and you simply won't feel like fighting the same - or new - battles; that's just what's going to happen because you have a chronic and progressive illness. I can tell you for certain that you need someone who is willing to fight for you.
I don't know your circumstances, but some of us who are facing similar situations feel badly about dumping such a heavy burden on someone we care about - or at least that's the way it seems to us. When you're the advocate, you don't feel dumped on at all - you feel useful and needed - and that's an incredibly good feeling. But you DO need an advocate and you need to get one as soon as possible, while you have the strength to do it.
Definitely connect with others who are undergoing the same type of health problems you are - no one understands better than someone who's wearing the same moccasins.
Wishing you the best -
posted by aryma at 10:30 PM on August 30, 2011 [1 favorite]
I don't know your circumstances, but some of us who are facing similar situations feel badly about dumping such a heavy burden on someone we care about - or at least that's the way it seems to us. When you're the advocate, you don't feel dumped on at all - you feel useful and needed - and that's an incredibly good feeling. But you DO need an advocate and you need to get one as soon as possible, while you have the strength to do it.
Definitely connect with others who are undergoing the same type of health problems you are - no one understands better than someone who's wearing the same moccasins.
Wishing you the best -
posted by aryma at 10:30 PM on August 30, 2011 [1 favorite]
Best answer: IANAD, but ask your nephrologist to check your aluminum levels. Dialysis patients are vulnerable to aluminum toxicity, which can cause memory loss and eventually dementia.
posted by timeo danaos at 5:08 AM on August 31, 2011
posted by timeo danaos at 5:08 AM on August 31, 2011
Response by poster: Thanks everyone for your responses and the web forum suggestions.
Now that I know what it's called (dialysis dementia), I know what direction to head up my research.
I am going to have a really hard time burdening anyone about this, I haven't even told my parents about this cause they have enough worries already. But I see what you mean though.
posted by udon at 12:01 PM on August 31, 2011
Now that I know what it's called (dialysis dementia), I know what direction to head up my research.
I am going to have a really hard time burdening anyone about this, I haven't even told my parents about this cause they have enough worries already. But I see what you mean though.
posted by udon at 12:01 PM on August 31, 2011
I can totally understand your anxiety, but please don't jump to conclusions. Again, IANAD, but as I recall, aluminum toxicity / dialysis dementia is a fairly rare side effect. When it does occur, it's more often seen in patients who have been on dialysis for a long time. It's not a good thing, so it makes sense to talk to your doctors to rule it out. However, there are plenty of other causes of memory loss, including medication interactions and emotional stress, and many of them are transient.
Talk to your doctors. Slow down. Breathe.
posted by timeo danaos at 12:35 PM on August 31, 2011
Talk to your doctors. Slow down. Breathe.
posted by timeo danaos at 12:35 PM on August 31, 2011
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posted by thinkingwoman at 7:28 PM on August 30, 2011 [1 favorite]