not going to dialysis

[texasstyle]

Due to some minor flooding which receded about an hour and a half ater, my husband has opted to not go to dialysis today. He will just drink his potassium binder. This is the last dose of 4. He used the other ones from skipped dialysis in the past 3 months. I think he thinks all is ok if he drinks it. "dialysis in a bottle" I guess. I should tell D no more prescriptions for it. It's supposed to be for emergency-foul weather etc., this way he has nothing to fall back on. Last D was Wed. Next time not until Monday. No one has to respond. Just venting. Thanks for letting me do that. Oh Richard, I know what you're going to say and you don't have to. I'm just glad to know I have people here to support ME.

[monrein]

I want to smack him and hug you, one arm for each action.   

[texasstyle]

haaaaaa.. that's some real multi-tasking going on there! I wanna smack him too for this behavior. Other than the health issues we deal with, he is a super nice guy. This however is not very nice of him. I was just thinking, I know with Liver failure those kinds of toxins build up and can cause confusion even coma, but can the same thing happen with the kidneys since the toxins are different? I do know the dangers of some of the kidney toxins (k etc...) Is there an ammonia level that builds up too?

[billybags]

Oh Tex, I feel for you and that wayward husband of yours..

[monrein]

Toxins do build up and can cause unclear thinking for sure.  Add in a touch of depression, some real lethargy and the unpleasantness that is D especially when a lot of fluid must be removed and no one in their right mind would want to go.  But then we must smack ourselves and get in there to avoid worse troubles, longer term complications and misery for the people who are stuck with us or at least who have stuck with us.  SIMPLE.  lol.   

[texasstyle]

Well, dialysis just called (I'm sure to say they have a slot for him to come in). Heard him saying he'll take the binder but that's the end (meaning last dose) & he'll be needing more. I also heard him say "you said it was perfect". I hope to God they aren't saying his labs just came back and his K is in critical range. "I'll see you Monday" so he ends the call with. WTF??

[KICKSTART]

Hi Tex , could you explain a bit more about this 'potassium binder' he has been taking ?

[Poppylicious]

Ack, tx.

*joins the queue with one arm ready for huggles, the other primed for a good smack*

 

[texasstyle]

Kayexalate-sodium bicarbonate. The units write scripts at the bdgining of winter for a snow emergency.

[texasstyle]

It helps to pull potassium out of the cell so your body can rid it . Not uncommonly through diahrehea or vomitting though we never  had that at home.Must be a low-ish dose. Hmm.. 60 something. In the hosp. we did have that situation.. His K was 7.8 once. That's the time he went into paralysis. Anyway it pulls it from the cell because about 97% of your K is in your cells. About 3% is in your bloodstream. K is also free flowing which means it goes between cell & bloodstream but still keeping about 97% of it in the cell. If any one needs to correct me PLEASE DO but I thnk I'm right on this.

[KICKSTART]

Hmm im still not sure what it is . The only thing i know over here and i cant think of its name is a powder that you mix with water , it tastes disgusting, but the only time it is given is when your potassium reaches dangerous high levels and that is the only time you take it. It has nothing to do with not attending dialysis. While im sure it does its job it certainly isnt Dialysis in a bottle , otherwise we would all be drinking the stuff tell him !

[texasstyle]

This is probably pre-mixed and that is the difference. I have read but not often, where some people who have K issues yet they're stil trying to do everything right, need to take it to keep levels in check. Our unit only gives it as a precaution that say you had a storm w/ 15 feet of snow and there was no way to get to dialysis, then you would take it. Potassium can be that dangerous. It's just to hopefully keep you out of the woods for that ONE time missed dialysis. It's probably pretty much the same stuff you use just a differebt brand name. My husband does not use it correctly. It's scary man.

[woodsman]

I take this crap 3 days a week for Potassium and it is like drinking mud in a glass. i tired mixing it with different drinks and its even worse than with just water!!!. my k is high and this Kayexalate removes it..... i am not on d yet. and i hope not to be for some time.

[del]

I'll stand in line behind monrien and give a slap and a hug too!!  Wed to Monday is a LONG time without dialysis.  Almost a whole week!!  Toxins can build up in the blood and cause major problems. When PD stopped working for hubby he saw things coming out of plug ins and giant birds in the sky!!  He was fine once he startd hemo and got the toxins out.  He will also probably have a crappy treatment on Monday with all the fluid on.  He needs a good butt kicking!!

[cattlekid]

Ooff....kayexalate.  Yuck yuck yuck.   

I had to take that right after my kidney biopsy.  It was either kayexalate or spend the night in the hospital.  So I took it down, puked it back up then took it down again and it did the trick.  I think they should market it as a prep for colonoscopies - much less liquid, and about the same effect.   

[Riki]

Ugh.. kayexalate.. they had to fight with me to drink that crap when I was a child.  I hated it.  It's like drinking sand.  I had to drink it every day in what we called "formula" which was just Ensure or Boost with the kayexalate and a protein supplement mixed in.  To this day, I can't drink Boost without gagging, even if I'm drinking it directly out of the bottle.

[Jean]

I want to be in the lineup for smacking your hubby also. Is he depressed TS? Obviously he is not stupid, or you would not be married to him. Hugs to you anyways honey, God knows you need them.

[billybags]

Jean, I am before you.

[texasstyle]

He is doing suprising well. Not sleeping, etc.. But that's just on the outside. Scary that I know what's going on inside. Poppy had a thread once I believe about what's "normal" ( but really isn't) and this "normal" here. Maybe someone should slap me. I did call D and asked how much of the binder he should take. They said due your best to see if he'll come in Saturday. And yes, I thinkyou're right, he will have a crappy session Monday.

[billmoria]

What is happening here is that he is using this as an exscuse to SKIP D. It is understandable but it is not good for him and puts too much stress on you. It is easy to take what they say about the drug and in his mind believe it is just like d except easier. Wed to Mon without D is dangerous. He is lucky to have him.
We all feel like skipping D at times _ I have been doing it for  4 years and I have wished to skip but I never have.
Cheers and good luck

[okarol]

Yesterday I went to a World Kidney Day symposium. One dialysis until nurse said, from the podium, that she tells her patients, if you do not come in I will call the police to come check on you. She said she actually has had to, if someone lives alone, but she says she will not give up on a patient who does not come in.

[texasstyle]

Okarol, it is that serious too! I get it I wish he would. He has that whole "too cool for school" attitude. I'm frightened. But then again this our "normal' and that is just nuts. I'm frightened again. Oh, he'll be ok. Holy cow, he can go into cardiac arrest better check on him. I'm going to bed he'll be ok. Is he breathing I'd better check...  That is how my day goes. Up and down. A rollercoaster of emotions. Sometimes when the most extremem reality hits me about it well, I feel like I have already lost him. In a way I have. You know what I mean. Bill: this is his 4th time this winterhe has done this. I'm suprised the unit puts up with it. He is quiet by nature and he doesn't fight them. He tells them how it will be and that how it goes. They've gone so far out of their way for him. It's wierd. He's weird and I'm proably the weirdest. Life is weird.

[okarol]

The other speaker I heard was a psychologist who talked about depression and avoidance. It's common among CKD patients. Would he see a therapist? Can you ask the social worker or nurse at the unit to get him some help?
You must feel so powerless and the stress on you is terrible. I am so sorry.
 

[texasstyle]

Oh, he would'nt go. *sigh*

[okarol]

May be you should go. It sounds like it could help. But it's not easy to do.
Sometimes we stand by watching someone doing damage to themselves and its killing us because we cannot alter their behavior. But if WE change HOW we respond to it, it can improve our outlook and may help him to take responsibility for his actions.