Mom's experience in Dialysis

[MomInDialysis]

Hello.  This is my first post on the website and I hope I don't step on any toes or break any rules.  I am not familiar with the dialysis lingo and I am learning by the seat of my pants, so your patience will be a blessing. My reason for joining this site is to see if anyone out here among the members has experienced anything similar to what my Mom goes through.  Her Neph says he has researched it and has found nothing, I say he isn't trying hard enough.
Here is the scoop
My mom is 79 and was very healthy.
She goes in for dialysis 3 times weekly
When she is on dialysis, 1 hr after start time, she begins to have internal shaking.  It is not visible from the outside and she says it is as though she is being shocked with electrical charges.  Her BP go up, sometimes critically high, but usually not excessive.  She did have a cardiac problem that ended her in the hospital during one of her , I call seizures, but they say it was due to an elevated Potassium level.  This has been corrected, but the problem of the internal shaking still remains.  It is very painful and the only treatment they have used so far is high doses of diphenhydramine (Benidryle). 30 - 50 mg 2 to 3 times during each visit to dialysis.  My Mom comes home stoned and sometimes she is so drugged she is unable to stand.  The amount of diphenhydramine they are using is frightening to the nurse/techs and my Mom.  So far it is the only thing that gives her any relief and now after 6 months of using it, the effectiveness is starting to fade and not help her.   We feel like we are beating our heads against a wall   She is on the verge of giving up and just stooping dialysis because of the pain and the fear, but we all know this would be the end for her.  Again the Docs say they have no idea what the cause is because they have never heard of it.  It is real.  We watch her in a sound sleep wake up in horrid pain, and they don't seem to be looking for a cause. 
Has anyone out there experienced it, anything similar, and if so, what was the cause.  I am not looking for the cure or advise on how to stop it, just trying to find someone somewhere who has had this problem and what the cause was.  HELP

[willieandwinnie]

  If her blood pressure is rising during dialysis they are probably dehydrating her. Is her blood pressure normal at the start of dialysis? Is she gaining fluid weight between sessions? You have to watch the potassium and phosoprate levels very closely. You can request that they just clean her blood and don't remove any fluid. You can also ask for them to use a profile, maybe they are taking too much fluid off during the first hour and need to spread it out. That seems to be an excessive amount of benydrel to be giving her. I am running this through my mind to come up with more information for you and I am sure others will be along to help you too. I'd tell that doctor that he isn't looking hard enough but I can be a witch at times. Does she have a catheder, graph or fistula? Any more information you can give us would be really helpful.

[MomInDialysis]

Thank you for the quick post.  OMG...this is the first site that I have had any replies on.  We just had a consult today with the case worker (again) and she acted like this was all new news.  I am so frustrated.  They are finally going to do a sona gram on her graph and her catheter area that is now gone.  She has tenderness at the catheter site, and the tech has told them that thre is a narrowing of the graph that needs to be checked out.  Again, the Case Asst, acted like this was the first time to hear it.   
Mom had a catheter in her chest because she needed immediate emergency dialysis when her kidneys shut down.  They used this site for the 1st 3 months of dialysis until the graph had healed enough to begin using it.  while using the catheter, she developed a blood staff infection in/near/around the catheter.  They put her on high dose antibiotics and monitored the blood for over a month and told her she was healed of the infection.  This site is still tender to the touch(they removed the catheter but the site is still tender).  She has had a low grade bladder infection that they have not been able to clear up since the start of dialysis. She was having 2 litres taken off and they dropped it to 1 per session.  She is still urinating often on her own and we have told both the dr and the case worker this.  They always seem surprised to hear it.  Her urinationis more now that it was when she started dialysis.  I have to tell you she is scared to death to cause any waves because she is afraid Kaiser will cancel her if her doctor gets too angry.     I really appreciate the suggestions.  I have mentioned that I thought she was getting dehydrated but the dr. says she is where she needs to be on fluids and the electrolyte balance would not cause this.  They are insisting it is anxiety, but it starts 1 hr into dialysis and does not end until the following morning sometimes the next evening.  Yes..I am VERY WORRIED

[MomInDialysis]

Sorry for the ranting and rambling.  To answer you questions;
her BP is normal at the beginning of dialysis.  She is not gaining fluid weight between sessions.  She has never had a fluid problem between sessions.
We are watching the phosphates and potassium very closely.  Her numbers today were very good.  Potassium was 4.7.  Doc said this is a good level to come into dialysis with.  I will have her talk to her RN that is working with her and see if he will do the cleaning without fluid extraction and see how she does.  They are currently pulling 1 liter at a bloodflow of 400.  If they drop the flow to 300, it is not as bad, but the effects still exist. 
As for the Benidryle.  Yes it is an excessive amount.  She was very worried about becoming addicted, but her primary physician, MD not Neph, told her she could not become addicted and not to worry about that.  He also told her dialysis was beyond his scope and he could not help her and bounced her back to nephrology.  I understand the bounce but my confidence in our neph is growing slim

[silverhead]

She (OR you, if you have her medical power of attorney) can ask that they try a dialysis run and only remove the 250ml rinse back portion for that one run and see what the results are, if they are removing to much fluid. and it sounds like they are, she would certainly have those symptoms. When Sharon first started D we insisted that they only remove the rinse back for almost a year, she was still urinating a good deal back then and her labs were always good, as her kidney function declined we had to up the amount removed through D but we kept close track and thankfully we have a fantastic Neph who agrees with what we want and wrote orders in her chart that Dialysis personnel were to follow our wishes.
Best wishes, it's a steep learning curve, but always remember, the patient really is in control, they have to follow her wishes.....
Tom

[dottieindialysis]

Hello.  I am the "Mom in dialysis"  My name is Dottie and I am so thankful for your advice.  I will talk to them on Thursday

[MomInDialysis]

Hi Tom.  Mom went in today and asked them to cut the fluid pull from 1 liter to the 250 ml like you stated and they said that 1 liter was the minimum they could take because of rinse back.  I don't know liters and mls, but that doesn't sound the same.  Does this sound right

[silverhead]

There is 1000 ML in a liter, I guess it depends on the brand of machine that is being used, the NxStage machine we use at home uses about 250 ML for the rinse back, so if we want to only remove the smallest amount  (we cannot program "0" withdrawal, has to be a minimum of 100) we set it for 100 and it usually will remove "about" 350. 1 liter sure sounds like a very high amount for a minimum fluid removal. When Sharon was in center they used Fresenius machines and they were able to program 250, sounds kind of hokey to me.......

[MomInDialysis]

Thanks Tom.  That's what I thought too.  I am going in with her tomorrow and I will talk to her RN.  The techs are pulling some crap and I need to talk to their supervisors.  Mom has asked them to set the machine in a certain way and they said OK, then when the shaking starts, she looks up and the machine is set the way they wanted not her.  She asked for the flow rate to be set at 350 and they set it at 400, then on Thursday, she asked for the minimum and they said it was 1L and they said OK, then set it at 2.5L> Very frustrated
I will let you know how it goes this weekend

[Hanify]

That sounds crazy!  When I did haemo, I could only remove about 1 litre of fluid before I got sick and crashed.  They absolutely can set it to only remove the rinse back or whatever you call it.  Be assertive and make them stop it if you think they've set it for 2.5.  That would have made me seriously sick, and your mum sounds a bit like me.  Make them explain it.

[MomInDialysis]

I went in with her on Saturday and discussed what we wanted done.  I asked them to show me the machine, so I and she can see what is being set.  She often goes in without one of us with her and she needs to be able to check the settings herself as well.  We told them we wanted enough for rinse back only and we recorded her wt in and out with copies for our journal.  (Mom has a personal journal now and we make it known we are keeping it)  They set it at .5  and it did not affect the shaking, but it did make a difference in her after dialysis.  She could function, speak clearly, and hold an inteligent conversation. She could also walk with out the dizziness and weakness, and had no disorientation as she has had in the past.  She did notice, Saturday night, slight swelling in her hands.  I told her to watch her fluid intake closely and her wt in and decide if they should take 1L on Tuesday.  We are still working on the shaking.  One RN from another dialysis center told us it could be from an infection either in her old access in her chest, or a pocket infection in her graph.  We have reported this to the Physicians Asst.  Waiting to see what is going to be done this week.