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texasstyle
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« on: September 11, 2009, 08:29:43 AM »

I haven't posted in the last few days because my computer mouse is giving me trouble. Time for a new one this weekend. Sure hope everyone is doing well & has a great weekend. Autumn is coming, always a season of reflecting for me. The stories of 9-11 have me a little teary eyed today as well. Anyway. My husband was told his potassium is so far off he could have a heart attack by his NP today. I think that's so scary. He doesn't follow any renal diet as much as I try to get him to at least slight adhere. Hopefully hearing this from her will make him realize. His last dialysing number(?) was 68 but is up to 72 today. He is on 2x a week. They did want him to stay an extra 15 minutes for his sessions but he doesn't too. Question: has the treatment this morning removed all the excess potassium from him so I don't have to be in fear today? I'm so ok with anyone's honesty about him not exactly being the most complaint. I try but it is ultimately up to him to take full responsibility for himself. Thank you so much for everything.
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caregiver to husband using in-center dialysis 4 years
LightLizard
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« Reply #1 on: September 11, 2009, 09:30:45 AM »

it is doubtful that dialysis has removed ALL of the excess potassium. dialysis can only do a small percentage, 12 to 15 percent, of what healthy kidneys do. that's why it's so important to adhere to a fairly strict diet. if he won't do that, he is asking for an early death. he needs to recognise that he must participate in his treatment and not just leave it all to the medical professionals.
besides his nephrologist, one of the most important members of his dialysis team is his nutritionist.
if you are the cook, then you can strive to prepare low-potassium meals as much as possible.
also, you might remind him that dialysis doesn't just remove toxins and such from his system, it also removes a lot of the good stuff, so diet becomes very important so he can replenish those nutrients and vitamins that dialysis inadvertantly removes...
give him a slap.

( by the way, if you look on the bottom of your mouse, you will see arrows that tell you which way to turn the seal to open the mouse. if you do that you might find a collection of dust in the mouse that you can blow out or pick out with tweezers. that may be the problem.)

LL
« Last Edit: September 11, 2009, 11:46:39 AM by LightLizard » Logged
KICKSTART
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« Reply #2 on: September 11, 2009, 11:31:53 AM »

He needs to act and he needs to act now! Potassium doesnt just creep up on you , it hits hard and fast and sorry to say this but then you are dead. I and a few others have had high potassium (not through neglect) but through our dialysis not working properly. First symptoms are a fast racing heart then you can have a heart attack anytime. I  dont mean to scare you but he needs to get it under control with drugs, dialysis and diet. One session of dialysis will not put things right. Also he only does 2 sessions a week? and wont stay an extra 15 mins ? How is he going to go on when the time comes to do 4 hours 3 x a week? And by not doing that extra 15 mins it could be alot closer than he thinks . I know hes a grown man , but he also needs to grow up , if he wants to stay alive , its time to take some notice and advice. I dont mean to upset you , but he needs to know straight how much he is risking.
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LightLizard
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« Reply #3 on: September 11, 2009, 11:53:20 AM »

as for 'understanding' this dynamic; it seems that there are a great many people who are resistant to change of any kind. especially changes that they did not institute, but must adhere to in order to survive.
human history is full of this kind of stubborn-ness and illustrates well how disasterous such a mentality can be. for instance, recent studies show that only 40 percent of the world's adult population is capable of digesting milk. apparently, it is necessary when we are children. but as we age we lose the ability to digest it  properly.  being the stubborn fools that most of us are, very few people will change their habits willingly, and so we have a host of illnesses and diseases that could be avoided with a simple dietary adjustment.
 :urcrazy;
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Restorer
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« Reply #4 on: September 11, 2009, 01:18:50 PM »

High potassium is pretty dangerous.  Do you know what high-potassium foods he's eating? Potatoes, bananas, other root vegetables, even larger amounts of some green vegetables (zucchini, cooking greens like kale, lots of broccoli?), beans, nuts, or lots of meat? Also watch out for "low-sodium" products like soup and lunch meat, as they often have added potassium chloride, a salt-substitute.

As far as I know, dialysis is pretty effective at removing potassium. I don't know how long his sessions are, but it's likely that each time he dialyzes, his potassium gets close to normal. The problem is the long period between sessions. If his kidneys aren't functioning very well, his potassium can build up pretty easily between sessions.

I don't really know how quickly potassium will build up; of course it depends on diet. I get heart palpitations when I've eaten too much potassium, and I dialyze every night (on PD). When my heart starts doing gymnastics, I know to do a manual exchange to start pulling out potassium before it all gets absorbed.

I do know this: without dietary adjustments, he's at big risk for a heart attack as his kidney function declines. It'll only get worse from here unless he starts doing more dialysis or eating less potassium.
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3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
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3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
texasstyle
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« Reply #5 on: September 11, 2009, 03:57:54 PM »

I am freaked by the severity of this, but your honesty means EVERYTHING to me. You simply can't turn your head the other way and think it'll go away someday. I think I have come to the conclusion that no, I will not be a supporter for home dialysis. He said when he has to three x week he wants to do it home. Today we stopped at Olive Garden for lunch. Angel hair Alfredo. For soup and salad he had the waitress LOAD up a plateful of Parmesan cheese to put on these. I said maybe you should cut back for today. He gave me a nasty look. Ain't that a pisser. So, a racing heart could be a sign of something. Glad to know that. You are so right about him having to "grow up". I reveled this before that I went through 48 weeks of Hep C treatment. I did all my homework, learned things above and beyond about it. In the end I now how to read all my blood lab reports and know so much more about how the liver functions and many other aspects of my health. I cleared the virus but it took a lot of work. I just can't understand not being proactive in your own health matters. I took control of my own health at the time. That's just crazy to me then I'm the one who gets stuck dealing with it. OK, you asked what high potassium foods he's eating. That would be all of them. He does no diet at all. I try to cook in a certain kidney friendly fashion when I can but when he eats alone he snacks on crap,crap,crap. tomatoes, tomatoes, tomatoes. Tomatoe sauce, BLT's (with french fries) etc.. I'm going to go to the first aid website and learn how to do CPR. You guys amaze me here. You are so into your health issues and take as much control as you can. I know it's hard, but you do. For that, I look up to you so much. Thanks again. Where's the smiley with a marble rolling pin or frying pan? I just might be using one tonight lol.
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Inara
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« Reply #6 on: September 11, 2009, 04:18:57 PM »

Mercy me....he's headed toward a heart attack at 90 mph. 

Potassium is a killer.  Too much or too little can kill you.  And he's definitely flirting with disaster.

But, what can you do?  Not much.  If I were you, I'd just tell him the facts straight out, then leave him alone.  Ultimately it's up to him to do the right thing.  By having an adult conversation where you voice the fact, you'll have no guilt if something, God forbid, does happen to him. 


 
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*Primary Caregiver of Leslie, my best friend.  She's been on dialysis for 9 years.
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Inara
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« Reply #7 on: September 11, 2009, 04:34:21 PM »

He gave me a nasty look. Ain't that a pisser.

PS:  Don't take that personally.  I'm sure he got chewed out by his nephrologist/nurses at dialysis and doesn't want to hear it again at home.....
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*Primary Caregiver of Leslie, my best friend.  She's been on dialysis for 9 years.
*Dialysis Nurse for 9 years
*HUGE Sci-Fi fan!! (Yes, I'm a dork)
*Recovery from broken leg.....85% healed and that's the best it will ever be.....a slight limp is kinda sexy, huh?
del
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« Reply #8 on: September 11, 2009, 06:02:46 PM »

I agree there is really not much you can do other than just give him the facts and tell him what is going to happen if he doesn't change his ways.  You can cook all the potassium friendly meals you want but if he doesn't want to follow the diet he will eat what he wants anyway.   :cuddle; to you. It must be so hard for you to see him doing this to himself!!
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« Reply #9 on: September 11, 2009, 06:43:14 PM »

There's information around on what happens when you are diagnosed with kidney failure.  It's a bit like a death or something.  There are phases - denial etc which he is obviously in.  He'll move on from the denial to depression probably.  I think you can only do so much - and you have to let him work it out.  Try not to become the person who does absolutely everything.  As hard as that may be.  He has to do it himself.  Good luck.
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Jean
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« Reply #10 on: September 11, 2009, 11:43:21 PM »

Could be that he would just as soon be dead than take dialysis. Just my personal thoughts.
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« Reply #11 on: September 12, 2009, 05:48:20 AM »

My  :twocents;  this must be a terrible burden for you , but IT IS  his choice. We could all bury our heads in the sand , but it wont go away. Is there no chance you could get him to join the site?
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nursewratchet
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« Reply #12 on: September 12, 2009, 08:52:32 AM »

Tell him to either suck it up and take care of himself, or get you a good life insurance policy.  He needs to eat right, have MORE dialysis, be on a 1k bath at the clinic... He's being a child, and tell him you are not his Mother, and that you don't want to be his widow.  He needs to "Man up".
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Vicki
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« Reply #13 on: September 13, 2009, 06:55:58 PM »

NW hit on it just before I was going to suggest that the unit should have him on a "K1" (or "1K" if you prefer) bath which will leach out more K(Potassium) during the treatment). That will help (and I am sure they wanted to give him extra time to help remove as much as possible).

Absolutely this is his choice and it's very difficult for you because the more you "harass" him (I am sure that's how he feels about it) to keep to a more renal friendly diet etc he would probably feel more and more put upon by everyone to change his ways and he might feel more resistant.

btw the extra parmesan would be full of phosphates rather than K but still worrying.

Is he on any kind of fluid restrictions too? If so you need to be careful of soup, ice cream etc as that all counts towards a fluid restriction. He may not be if he's only doing 2x/week (lucky sod!).

I think it's best to talk to the unit dietician and get everything laid out for him. Then just let it sit with him and HE needs to make the choice for HIM. If you, or others, keep harping on about it he will probably just resist more because he doesn't want to know about it.

Sadly it may take a severe incident for him to wake up and do something about it - for your (and his) sakes I hope it doesn't come to that. A very difficult and worrying situation for sure.

 :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #14 on: September 14, 2009, 07:55:16 AM »

If he refuses to take care of his potassium, then perhaps he needs to be taking Kayexalate on a regular basis.  It's vile tasting stuff, but it works!
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Wallyz
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« Reply #15 on: September 14, 2009, 10:22:04 AM »

Tell him to either suck it up and take care of himself, or get you a good life insurance policy.  He needs to eat right, have MORE dialysis, be on a 1k bath at the clinic... He's being a child, and tell him you are not his Mother, and that you don't want to be his widow.  He needs to "Man up".

Preach it Sister.  There are two options: Live with it, or die from it.
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texasstyle
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« Reply #16 on: September 14, 2009, 12:51:11 PM »

Holy cow! All of you have just inspired me to not take any childish guff anymore! No, I'm not his mother but don't want to be his widow. Hard to say but in the back of my mind I think about that a lot. On Sept. his dialysis center is having their 3rd annual picnic at a local park. I've spoken by phone to one particular nurse a few times, but this should give me opprotunity to meet the rest of the staff. I found a recipe in a renal diet book for pineapple chicken. I have the ingredients so I think I'll make it tonight. It sounds so good too! Like real people food lol. Having trouble getting meat/vegtable exchanges but I'll eventually start understanding that. Thanks for putting things into perspective. It's so easy to be in denial.
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RightSide
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« Reply #17 on: September 14, 2009, 08:21:10 PM »

Don't make drastic changes to your husband's diet.  Drastic changes will make it hard for him to live with.

Instead, try preparing a low-potassium meal once every few days.  Don't even TELL him it's low-potassium, just prepare it because it's good. 

If he can stand that, then try preparing low-potassium meals a bit more often. And so on. 

That's what I did, to get used to my renal diet.  I started with my original diet.  I looked at my renal diet as a goal to be reached over a period of weeks or months. And then, each week, I made a small change to my cuisine, and then another, and another, gradually morphing my old diet into my new renal diet.  And that was that!
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