My father is a new dialysis patient – only 1 month in. He is 77, diabetic, suffers from peaks of high blood pressure and is now on dialysis. It has been a very hard transition for him to make. His fistula failed so an emergency port was placed in his chest. He has had surgery just this week to implant a fistula graft in his arm. He is currently residing in a rehab facility in a nursing home. I’m sending this because I feel like I cannot get answers from local doctors and treatment facility. This last Monday was the first time his dialysis team was able to get his dialysis up to 400 (Fresenius facility). On Tuesday morning he called me at 6:00am in a panic. He felt like he was having a low blood sugar with sweating and confusion. He was seeing things that weren’t there. His BG was 245 which isn’t that odd for him, so that was ruled out. The nursing home was sure he was going to pass out and were ready to send him to the ER. After he ate and drank something, it started to pass and by evening he was back to his normal self. He was VERY angry at the Monday treatment and so we figured it was a manifestation of his mood. My other instinct is his electrolytes were out of balance. I’ve taken care of my dad for the last four years and in the past when he would get in a similar mood, a gatorade or juice helped ease the confusion. I know gatorade is not good due to the high levels of all the things a dialysis patient shouldn’t have. But he acted like that was what he needed. It got better as the morning went, so everyone moved on. Wednesday night, dialysis again. He was in a much better emotional place than the previous treatment. However, at 4:00am the next morning, he had the same issue. Confusion, seeing things that weren’t there, worry, anxiety. He described it like a nightmare. Then after a meal and a few hours it passed. The nursing home staff have no answers except to refer him for an eval with a psych doctor. We cannot find anything online on any kidney or dialysis sites that relates to dysphoria (nurses said it was a type of dysphoria he was displaying.) The only link to what my dad is experiencing and information is related to dialysis disequilibrium syndrome and all research I’ve found says that is not a common condition anymore with modern treatments. He acts like he’s anemic and his electrolytes are out of balance. We keep getting told that blood tests are done once a month and that would be able to tell us more. The nursing home staff really aren’t doing much to find a solution. The nephrologist NP he sees is out of town till the end of next week. The staff at the dialysis center say its not related. Nothing really online. I’m scared and no one will talk to us about this problem and just want to send us off to someone else. Dialysis wasn’t even on our radar. We knew it might be something in the future but my dads kidney function has maintained for two years between 15 and 20%. No training. No counseling. Nothing. Then he goes to the hospital with what we thought was a heart attack. Very aggressive blood pressure treatment took his kidney function from 14% to 6% in three days. It wasn’t until the third day that his other blood indicators said yes, his kidneys were failing. And, he didn’t have a heart attack. The week leading up to his first treatment, he swore he would not do it no matter the end result. The next morning, he was OK with it, had the emergency port put in and had dialysis three hours later. Now, one month later we are only a little wiser about dialysis and only because we sit with him for each treatment and ask questions of the nurses. Since this dementia behavior has surfaced, we know even less. No one will give us a straight answer, check his blood, do any scans, something…anything that can give us a clear idea of what is going on. My father has a PhD in Mechanical Engineering. My mother was an RN. Four of the eight children and husbands in our family are educators. We are intelligent people seeking intelligent answers. Reaching out to you is a long shot I know, but it is all I know how to do right now. Any advice. Any thoughts. Any history. Any suggestions are greatly appreciated.

Every month, the dialysis team gets together for something called a multidisciplinary conference to discuss the patients in the dialysis unit.  I suggest that you talk with the social worker who is responsible for your father and ask to be in attendance at the multidisciplinary conference.  At the conference, you should be able to visit with the nephrologist, the nurses, the dietitian and the social worker who are caring for your father.  It is best to have this discussion with the entire team present and have your concerns addressed.  Both you and your father should be able to attend.

 

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