Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Mental acuity and confusion

I need to know about other's experiences with mental function as their kidneys decline because yesterday I got so confused, could not think clearly. I dont' take any pain med on a regular basis, generally take hydro morphine when I have significant pain but that is rare, 3 times in last 2 months. Did have anesthesia early May but I'm thinking, based on my recent experience, that along with the fatigue I am now getting my brain function/clarity of thinking declines. Since I work for myself as a lawyer this is really important to me.
Side note: I'm not getting good answers, often no answers as they tell me "it is different for each person" (which is no help to me), from my health care team and had some major foul ups early on so I had to change doctors. So, the personal experiences that have been related thru this support group have really prepared me and given me insights, thank you all so much.

Replies

deleted_user
deleted_user

I don't know what your estimated glomerular function rate is. (eGFR) but I will assume that as kidney function declines, waste products build up in the blood and this blood goes to our brains and probably contributes to confusion and sluggish brain functioning. Maybe someone on this board who has been through dialysis and/or transplant can help you more with how chronic pkd effects our thinking abilities. I would also assume that after one has a dialysis treatment then the foggy thinking should improve. I'm sorry you are not getting good answers from your health care team. Hopefully someone here will share with you some experience with this and provide you with some validation. Don't be too critical of yourself. I can understand the emotions that come with loss of our health. It stinks! I used to practice nursing and don't now. So, I switched gears and started my own business as an artist. I am very happy I did. I hope my rambling away here has done some good. Take care.
deleted_user
deleted_user

Unfortunately, the truth is that it IS different for everybody. Adding to the mix is the fact that there can also be other reasons for some mental fogginess...like menopause or stress.

With that said, I did notice a general mental fog that came along with declining kidney function. My neph was great and he explained that not being able to clean toxins form the blood can cause a host of different symptoms in different people. I was lucky that he knew that, and believed me when I told him what as going on with me.

One of the things that happened when my kidney began to fial wa that I had a hard time sleeping. My doc prescribed restoril which is a muscle relaxant. It helpe dme a LOT and I didn't get overly dependent on it. I haven't used meds to sleep since shortly after my tranplant 2 years ago. I had restless legs and a feeling like I had to strectch all the time. I also found it hard to get comfortab;e due to the size of my kidneys. The meds helped me get a better night's sleep. but the truth is I got to the point where no amount of rest would counteract the fatigue. I had some good days, but I was very very fatigued and along with that came mental fogginess as well.

I don't know what your work or home situation is like but if you are able to rest, do less and just give yourself permission to BE instead of DOING all the time, it is a great help. Obviously that is not always possible...but sometimes the pressure comes form ourselves as much as from the outside world.

All the best and keep us updated on your progress.
deleted_user
deleted_user

yes your mental functioning can slip when your kidneys are failing. the blood that flows to your brain is contaminated.
we all fear dialysis but the truth of the matter is my thinking sharpened as well as my eyesight improved as early as my first session. driving home was much easier than driving there.
clean blood beats dirty blood hands down.
deleted_user
deleted_user

My cognitive abilities definitely started to decline from a combination of things when I was going into renal failure. First of all, my blood wasn't being cleaned well, which made me tired and it was harder to concentrate. I was also anemic, which by itself can cause fogginess and fatigue and the psychological stress of knowing that I needed a nephrectomy. I had the surgery and now that I am on dialysis I don't know where my brain went. I'm no dummy- I a member of MENSA (not bragging, just making a point) and since the surgery and dialysis started it is worse. I hate hearing the statement, "It's different for everyone" but it's true... It is getting better though. Right after my surger and starting dialysis, I had a hard time remembering what happened two days before. Now it's hard to remember what happened last week. This is, from what I understand, completely normal and will, hopefully, get better with time. It has, and I hope it will. The only thing I always know for sure, is when to go to dialysis. Before the surgery I started keeping a calendar (I never thought the phrase "I have to check my calendar" would ever come out of my mouth), but it does. Instead of freaking out my therapist helped me come up with strategies to help me. I was and am, foggy because I am TIRED! That's it. Nothing fancy, unfortunately, it comes with the territory. And I am glad your doctor believes you. Don't try to do too much if you can. I am a teacher, so fortunately I had the whole summer to not worry about it. I actually thought I was going to have the surgery, start dialysis and get "used" to it, and go back to work teaching full time in 8 weeks. I have finally admitted to myself after much discussion with 3 doctors that I need to not go to work for another 6 weeks and reevaluate the situation in 4 weeks. This means I will start school 4 weeks late. I hate doing that, but it's better than going in for a day or two and then being out, then going back and forth. It is better to let my body finish healing and adjusting until I am ready. I am with it enough to know I don't physically or mentally have what it takes to do that job effectively right now. It's ok. I won't get in trouble for starting late, but I will get in trouble if I don't do a good job. I was barely making it last year, but luckily for me, my administrators knew what was going on and what would happen over the summer and they were very compassionate and never said a word. I was that teacher doing the minimum to get by, because that's all I was capable of, but I can't do that forever and I wouldn't expect them to let me to. I'm sorry that this is probably not what you want to hear, but listen to the people on these boards. They will tell it like it is and you will learn a lot from people who know from experience, not because they read it in a book in med school. Good luck. By the way, I found out that a little extra sleep helped a lot. When your kidneys are functioning right, toxins can build up in your blood causing all kinds of problems including fatique. I hope you feel better soon...
tryn2bpositive
tryn2bpositive

Thank you all so much. Ugly as it is, the reality is my blood is gettin "dirtier" and the stories related here provide me with the knowledge that I have to incorporate coping strategies to make sure my thoughts and work is clear. And, I'm not imagining this. Knowledge is power. Power gives strength. I can and will get thru this... and I have this great venue to question, whine and deal with the associated b. s. that comes from pkd. Thank you all for posting.
SeattleSlu
SeattleSlu

My mental clarity and memory are diminishing as well. I wasn't sure that PKD was the culprit until reading similar posts on this site. Also suffering from sleep apnea (I use a CPAP machine for 8 hours every night), I presumed that my high levels of fatigue were tied to that. Now I'm gathering an understanding that again, PKD might be the cause of this. I have a hard time staying awake throughout the day even though I've had a full nights rest. Further, I feel mentally foggy a lot of the time and struggle to find particular words when trying to articulate a thought.
Chewitt
Chewitt

Low kidney function can affect brain functioning. What is your eGfr? In addition, all sufferers of CKD can experience cognitive effects, often because of the impact of vascular problems. You might find this article interesting.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4052721/
feeb
feeb

Ive wondered about mental health and cognition issues associated with the declining GFR myself. I am depressed and not nearly as sharp mentally as I used to be. Im slower and I forget things more, etc. I suspect it is related to declining kidney function. I am not taking pain meds or any other medication that might cause depression. When I ask my nephrologist about this he seems totally disinterested.
MaudeElizabeth
MaudeElizabeth

My grf is at 8. I noticed trouble at about 10. My phosphorus was high and my hemaglobin was low. When I improved my diet and had a shot to stimulate my blood production(can't remember the name...symptom I guess)things improved. It tends to cycle up and down with diet and hemaglobin. Also have to watch my other meds carefully as my function drops...I stopped a heart med and have decreased a psych med (lamotrigine) in half. I notice that the more I can get out and move the better off I am. Too much couch time can cause problems with confusion too. I had hoped to make it to transplant before having dialysis but am beginning to see that it is not the enemy but an avenue to feeling and thinking better...I hope.
Chewitt
Chewitt

I know how you feel feeb. My function is not that low but my memory and concentration are increasingly poor. I think it's because of tiredness, poor sleep and dealing with pain as much as anything else.

MaudeElizabeth, do you think you will start dialysis? I understand it brings you to a point similar to kidney function 10-15%, and many people say they feel better immediately.
MaudeElizabeth
MaudeElizabeth

I have an offer for an organ donation. If it works out we plan for November as that would be best for my donor. My kidney function is about 2points higher on a secondary test so we are hoping I can make it until November without dialysis. My plan is to do PD if it comes to that. I would rather not have two surgeries if possible. My life is quiet so I have the luxury of resting as needed. Its been a bit of a tuff week after a UTI and my optimism is being tested. Just finished my antibiotic yesterday and am feeling stronger already. Getting real for sure...
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