I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: texasstyle on March 11, 2011, 04:59:06 AM
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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.
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I want to smack him and hug you, one arm for each action. :cuddle;
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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?
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Oh Tex, I feel for you and that wayward husband of yours..
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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. :cuddle;
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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??
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Hi Tex , could you explain a bit more about this 'potassium binder' he has been taking ?
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Ack, tx.
*joins the queue with one arm ready for huggles, the other primed for a good smack*
;D
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Kayexalate-sodium bicarbonate. The units write scripts at the bdgining of winter for a snow emergency.
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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.
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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 !
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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.
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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.
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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!!
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Ooff....kayexalate. Yuck yuck yuck. :puke;
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. :o
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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.
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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.
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Jean, I am before you.
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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.
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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
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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.
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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.
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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.
:cuddle;
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Oh, he would'nt go. *sigh*
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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.
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Interesting what okarol says..as i am just going through therapy and am learning exactly that !!! YOU cant change the other person but YOU can change you ! I know he is your hubby and that you love him but it sounds like he needs a wake up call. You will only be seen as a nag ! He is an adult , responsible for his choices .
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Henry that was a good post and I totally get what you're saying. I thought that myself if it is an att. thing & it's not. If he were hereonhis own he would do the same thing. I go through periods where I "take care" of him, then ignore him (but not really. I know exactly what is going on even if he doesn't know it) and the process starts again. I see he has brought home another prescription for the Kaxelote (potassium). I know he is going to make this a habit of drinking his "dialyis in a bottle" quite often. This is a guy who was told for over a year by his center to start dialysis 3x a week instead of 2. He said "I'll pass" each week to them. He eventually filled up with fluid, won't seek attn. and his lungs collpased and the pressure of the water around his heart caused his heart muscle to burst out the side.(pericardial tamponade) He has used up 8 of his 9 lives Henry. I have come to the realization that he won't be around long. It is so wierd to think that way because it's all because of neglect. I do DO for myself a lot. I would be nuts I didn't. Thanks for your concern.
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TS,
I think you should be preparing for when he uses up that 9th life. Make sure you know how to handle everything that is going to need to be done when he is gone.
I realize that this may seem kind of harsh, but if he is not going to take care of himself, then you are going to have to be able to take care of yourself without him.
:cuddle;
If there are important things that only he knows how to do, make it a point to learn how to do them. And if you out right ask him, it may (possibly) be a wake-up call to him.
Thinking of you.
Aleta :cuddle;
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I keep thinking it won't really happen. I guess I'm so used to this by now. I think oh, well... HE does ok skipping dialysis.Maybe HIS body is different than most people. His labs usually come back sorta ok-ish for the most part, often good, so I guess it's ok HE doesn't need to follow the renal diet at all. "He's different". Do you know what I mean? This is going to sound HORRIBLE but I fear the day will come when I find him dead in the big chair in our living room. Or on the sofa as he often sleeps there. I will not handle that well. My body will shake and tremble and I will scream his name in hysteria. I realize no one can predict when or where they will pass away, but it isn't fair. I will tell you a secret: if anything I will fell slighlty embarrassed because of the way he's acted all this time. I can't explain. Is the wrong of me? PS: how often are your blood labs taken to check for K, phos, glucose, KT/V and that good stuff? It is monthly or weekly? Thanks
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I agree strongly with Aleta about being prepared for the eventuality of his death. He's no different than the rest of us, his body can't and won't recover if or when the potassium maxes out or fluid invades his lungs or whatever.
Does he have a will? If not, get one done...make sure all your property and bank accounts are held held jointly etc.
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Sweetheart you are only fooling yourself, just as your husband is fooling himself , only you are doing it in a different way. It doesnt matter how often his 'labs' are checked , potassium can go up rapidly in a day, especially if he doesnt stick to a renal diet. You are going to have to confront him head on , NOT about going to dialysis but WHAT do you do if he drops dead. It sound harsh... but he isnt superman, when things go wrong with dialysis they hit hard and they hit fast. You may well find him in that chair , dead from a heart attack probably more than anything. If we could all get by with D in a bottle and 2 days a week , hell we would all do it , but have you heard of anyone on here doing that ? Yes people may skip ONE session but for very valid reasons and only do it once in a blue moon. You cant make him go , we cant make him go and the unit cant make him go. Sit him down and ask him to be honest with you as to why he wont go and if he says its because he doesnt think he needs too, then so be it . You must then follow up with , so is everything in order for when you die? This post sounds so harsh on you and its not meant to , its meant for that selfish husband of yours. :cuddle;
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TS,
I really understand. At our clinic the blood work was done once a month. I think that is fairly standard. But depending on what he is eating, the levels can change very quickly and his kidneys are not going to remove the toxins.
If his potassium gets too high, his heart can simply stop. And high PTH means that the calcium is being leached out of his bones making them brittle. You already know what too much fluid does to him.
Of course you feel embarrassed. :cuddle;
Even though you are both adults, it is hard not to feel some responsibility for the way your spouse is acting.
Do you have any family nearby? You need a big hug and some support. :grouphug;
Aleta
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PS
I agree 100% with Kickstart!
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HEY Woodsman; Try taking the powder with Mountain Dew. It bubbles up at first then goes down fairly well .
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I appreciate everyone's honesty. Does have a will (needs to slightly altered as there different cars now and one less boat), but everything else pretty much same. Joint bank account. Of course everything changes when the other one passes on. Kickstart-that's just what I needed.
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breaks my heart for YOU TS... Does he know what he;s doing to you? I think he's forgotton he's not the only one in this disease. I tell ya, everything you say about 'your' feelings going through this, i have felt too and if hubby was doing what your's is doing/not doing, im afraid i'd be the one in the hospital. And thats serious. It's HARD enough when they are being the best they can be, but devistating when their not. Hubby is so *well* at this time, and i dont think he wants to ever feel the badness from not enough D so i dont ( :pray; at this time ) have those issues) but i have collapsed in grief not so long ago thinking 'this is it' and where will i find him. Your hubby needs to know he's taking you down with him and he needs to take care of you. Sending :cuddle; and hopes for a brighter day....
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I left the country so I wouldn't comment on Mike and his shenanigans!!! I had to consume vast quantities of Dom Perignon to control my rage (but then I watched the IT Crowd and laughed hysterically and probably upset the other passengers... but I digress).
Lots of good comments here. I know you';ve heard it all before TS... you know we love you and care and wish things would improve.
Re the mud stuff... yeah I had it when my K hit 6.2 after transplant. The stuff I have (I still have a large jar because they gave me one in case I needed more than 2 doses - luckily Danny kicked in and he can handle his Potassium!) Anyway it's Resonium A here. daft name.. sounds like (bad taste coming up) something that might be coming out of a Japanese reactor....
So the doc perscribes it for me and says "I'm SO SORRY to make you take this" and then the pharmasist giving it to me says "I'm sooo sorry you have to have this. it's really difficult"
So totally warned and freaking out.. I actually found it wasn't THAT bad. I wouldn't want to have it every day, but I found it reasonably easy to drink if I lay back and thought of England.... no wait.... :rofl;
Monday's been and gone so one presumes he went to D and....?????
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Aw Tex, I've had my grandkiddos the past few days (still do) so I haven't been online much and missed this until now. You know, we're two peas in a pod in this situation. (brothers from other mothers, you know). It IS frightening and please don't be embarassed. If you are, then I have to be too and I don't want to be. You know that our fears are exactly the same. For the same reasons. Both of them should be kicked hard in the backside for the worry they cause. I HATE the big chair in our living room and I'm beginning to feel the same way about our bed. Because I know that's most likely the place someday that I'm going to find him... dead. The tough part is making yourself feel ok about approaching the "what do I do when you're gone" discussion. Though, it is something that has to be done, it is hard to make yourself ok with it because I feel like I'm wishing bad stuff on him by needing to talk about it. My heart goes out to you, my friend. :cuddle;
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TS I would just like to say one thing in defence of your husband as everyone's been quite hard on him (and he may deserve it) BUT I know from my time on dialysis there were many times when I simply couldn't face going in... I tried every excuse in the book, I had a bad cold, I wasn't fit to travel, there was too much snow (In England!!) and even one time got in the car and drove randomly in opposite direction ...and they were all cries for help. My dialysis unit worked really hard with me, and I am normally quite a quiet restrained sort of person, even had arguments with them at dialysis but I found it increasingly difficult to cope and thought I would go mad if I had to sit in that chair one more time. Everyone handles it differently and sometimes it is too much for a person. Try and get him to be honest about the way he feels. It might help you to understand whats going on in his head.
I know if I end up back on dialysis, there will be a time when I would probably call a halt.
With best wishes and a hug from England. Look after yourself. :cuddle;
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TS , so glad you knew my post wasnt directed at you :cuddle;
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He just does not like going to dialysis. (neither do you right?) He wants to eat what he wants, do what he wants, when he wants. (so do you right?) I 've thought about asking him if he would just like to stop and "Hospice will do a really good job at keeping you comforable". Oh no, he won't want that for goodness sake! So I can't figure him out. The dieticain wanted him to stay after to go over diets and he won't etc.. It's a losing battle and one day the battle will be completely lost. I love you guys for making me feel like I'm an idiot and that I'm not alone! Richard: I was in that extra suitcase of yours the whole time but you never took me out lol. Waited and waited...what a good time we could've had! All that foriegn coffee taste testing! oh well next time...lol
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Hey this is the one place where you are never alone and never short of a shoulder to cry on x
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I know if I end up back on dialysis, there will be a time when I would probably call a halt.
When they told him his kidney was failing Gregory said he wasn't going back on dialysis again, and this is his last transplant. Probably he'd change his tune when the time came. I've probably told you that already, I think of it a lot, it was quite a kick in the guts. anyway I think Gregory would understand your man. Having made that remark though, I agree with Kickie, Monrein and willowtreewren, about preparing for the worst. Do you think, if you asked him to make choices for his own funeral (flowers, coffin, music, location, cost etc) he might get the point? Plus its quite a practical thing to arrange the funeral before you go.
I just wish we could arrange some kind of permanent :grouphug; for you both. :(
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I think Gregory would understand your man.
Having said that, I went and asked Gregory. I didn't tell him the detail of the story, just said, what do you think if someone stops going to dialysis. I said, there's this guy on IHD who wont go to dialysis and his wife is freaking out. He said a list of things which I forget, but they were all along the lines of, he must be tired of it, he must have lost hope, maybe he's old, when you have the hope of a transplant dialysis is alright... he said, he must be old, must be 60. I wouldn't blame him, he said.
Bearing in mind that he hasn't read the thread, nor seen your profile pic Texasstylish. I doubt he's over 60 is he? That was the cut off age for a transplant when G was on D. But I guess it brings us back to that other question people have been asking, about depression. Has your man lost hope? He sounds a bit strong and silent to me, so maybe he wouldn't say.
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Tex maybe this is a case of your man having low self-esteem and depression from feeling like he is not the hardworking breadwinner any longer. I know there is another thread about relationships and D, that I have discussed that this is how my bro feels being on D and why he doesn't date. It is almost like it is embarrassing for men to be at someone elses mercy I guess. (not all men of course) Of course TexasStyle you are such a beautiful vibrant gal I can see where your hubs may feel sad that he cannot love and take care of you like he thinks he should ya know?
xo,
R
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so many good thoughts and points about this, wow! He just turned 60. I'm almost 46. Been together 13 years. He is the strong silent type in fact! Tries not to complain and tells everyone everything is just dandy. I'll have to get into this depression issue more. He went on Lexapro when he was dx with kidney failure. 20 mg. Maybe it is time for a change. Today they "challenged" him(?) for fluid, and he is cramping like heck. I have so many emotions to feel.
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:thumbup; Thanks for saying that Henry.
At the end of the day it is about quality of life not quantity.
Doctors don't know everything nor understand anything from a patients viewpoint.
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Yeah but the kick up the butt is because he is NOT discussing all this with his wife ! You have had that conversation or maybe you would have had a kick up the butt too ! He must be able to see the stress TS is under. Having that conversation about if he wants to live hard die pretty would take all the stress out of it.
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Henry - I do see where you are coming from - as Sugar said it's about quality not quantity - however in MY view (and just my view - and everyone's is good because they're opinions and they're all personal not right or wrong) is that you can live a life of quality on dialysis or you can sabotage it. Granted I don't know hos full situation to be able to judge fully, and perhaps that's not fair, but you can *bend* rules, and work *with* the system/restrictions to live a life that is fufilling. That's how I viewed it. Yes, I'm 20 years younger, but I don't think that should come into it. I mean I would drink the odd coke, or have chocolate, or whatever... but I would do it *intelligently* as in make sure I had extra binders with a phos overload, or if it was potassium, to go low-K or the rest of the day to balance it out etc.
What it seems that TS's hubby is doing is way more reckless rather than thoughtful. Like that guy in little brittan "I want THAT one!" (Andy) it's think in the now and not consider the consequences - and when it all falls in a heap, as it has on many occasions with him winding up in ICU with a K over 7, or with fluid on the lungs, or whatever, then yes, I call that reckless. And the REALLY puzzling thing for me (and I admit, I do not pretend to understand how depression, or pride, or whatever it is might be contributing to these actions) is that he should KNOW from his OWN experiences that living like this must be just as much hell as working more WITH the system than AGAINST it - I mean who wants to feel that dreadful you can't walk, or you're in ICU for days, or you can't breathe, or a combination? And this isn't even including the affects on his wife, kids, family etc.
And yes, how much of this is linked to the silent/stoic/she'll be right attitude that seems to be a male thing - which I don't get myself. I know some men feel they have to appear strong and invincible and all that, but seems a bit silly when facing such a disease like this. So denial has to be part of it.
Whatever it is, and why, I guess is irrelevant... I mean not only is he suffering, but TS and others are through his choices.
Yes, we're all entitled to, and responsible for our choices, it's just difficult to hear about when it seems that things could be so much easier with a bit of effort/thought/planning.
Just my two cents. take with a grain of salt.. wait no.. salt=bad!!
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Taking to heart everyone's viewpoint and they ALL have great points, but I think Richard just hit the nail on the head as they say. He has been in crisis states so many times with tremendous suffering involved, and he keeps doing the same thing over and over again.It must stem into a deep physcological reason but you get to the point that it is enough already for goodness sake. Some kind of severe denial. This is what put him here in the first place. I'll probably never understand and come to think of it, neither will he. I am angry and I can fully understand why others are too.As angry as I am about these issues, there are many great qualities about him other wise or I wouldn't be with him. I just wish so badly life wasn'tlike this. I know that is what you guys want for yourselves as well. Here we are all together in this wierd situation about having organ fail. I'm glad I have you though!
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I forgot to say, he does not want to die. He wants to live a quailty life (free of D of course), butyou and I know that will not happen without some effort put forth. Even healthy people have to eat right and stay active to feel well.
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Oh, Ms. TexasStyle. Many hugs for you and yes, your husband, too.
I agree with Richard and KickStart. In fact, I was thinking the same as KS while reading Henry's post. There is a world of difference between rationally discussing end-of-life issues and just doing this crazy, random, come and go approach. I don't want to insult your husband, but this sounds like the tantrums I would throw when I was a child on dialysis. I bit a nurse. I used to lock myself in the bathroom with a cup and turn the water on. Of course I never drank anything because I was afraid of my father, but I loved hurting the nurses because I was hurting.
I also want to tell Nat that I said something similar to what Gregory said once. I told Gwyn I would never go back on dialysis and did not want another transplant. Then I did a search for "kidney transplant stem cells" hoping that the world had made some sort of advances in the intervening decades. That was how I found Harvard and Stanford's study, and once Harvard turned me down, I found Northwestern's about 3 months later. There was massive miscommunication at one point where I was told that I was no longer being considered for the trial and I lay in bed for two days crying thinking about what it would be like to die, how it would affect my kids, what my last moments with Gwyn would be like. Gwyn was on a rampage at the time, managed to get the surgeon on the phone (it took a week) and after initial confusion, the surgeon said that the person who told me that was mistaken.
So what am I trying to say: If it were me, and keeping in mind that I don't know TS's husband, I would ask him "How can we approach this so that you will want to take it seriously and live?" Or whatever will open up that conversation. For me, I needed to find something new to what I had experienced 34 years prior, and it needed to be radically different. In our first phone call, the surgeon told me that I did not qualify for the trial but that "in an effort to make lemons into lemonade" he wanted to tell me that if I chose his hospital anyway, I would be on a steroid free protocol. Well, I was already steroid-free and so far beyond settling for that. What could your husband work toward that would make all of this worth it to him? I told the surgeon that I was willing to wait it out on dialysis if he would put me in the trial as soon as they opened it up to retransplants. Most nephrologists told me I was an idiot, but this was what I needed to do, this was what would make dialysis worth it to me. Happily, I did not have to spend any time on dialysis, but I am convinced that I would have done what I had to do to get this done my own way, the way that I felt was right for me.
Barring that, if he is totally unwilling to discuss this, I think I would tell him that I need to start the painful process of emotionally detaching so that I would not completely fall apart when he dies. If he doesn't want to die, then he needs to find a way to make this tolerable and stop toying with his life. And yes, I think it is selfish of him the way he is approaching this. It is definitely tantrum shaped. When I was on the suicide line we would get people talking about their plan and ask questions like "So, who's going to find you then?" It is one of the cruelest things you can do to someone in my opinion, and the people I've spoken to who found the body never get over it. If he wants to do this, he should discuss it with you and do it properly - get hospice in, let you mentally prepare yourself. I just cannot imagine the fear and stress of this situation, TexasStyle! I am heartbroken for you right now. :grouphug;
Oh, and sixty is young! That's younger than my father, and he's still a world-traveling workaholic. (That's weird. Spell check recognises workaholic but not nephrologist!)
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Henry - I do see where you are coming from - as Sugar said it's about quality not quantity - however in MY view (and just my view - and everyone's is good because they're opinions and they're all personal not right or wrong) is that you can live a life of quality on dialysis or you can sabotage it. Granted I don't know hos full situation to be able to judge fully, and perhaps that's not fair, but you can *bend* rules, and work *with* the system/restrictions to live a life that is fufilling. That's how I viewed it. Yes, I'm 20 years younger, but I don't think that should come into it. I mean I would drink the odd coke, or have chocolate, or whatever... but I would do it *intelligently* as in make sure I had extra binders with a phos overload, or if it was potassium, to go low-K or the rest of the day to balance it out etc.
What it seems that TS's hubby is doing is way more reckless rather than thoughtful. Like that guy in little brittan "I want THAT one!" (Andy) it's think in the now and not consider the consequences - and when it all falls in a heap, as it has on many occasions with him winding up in ICU with a K over 7, or with fluid on the lungs, or whatever, then yes, I call that reckless. And the REALLY puzzling thing for me (and I admit, I do not pretend to understand how depression, or pride, or whatever it is might be contributing to these actions) is that he should KNOW from his OWN experiences that living like this must be just as much hell as working more WITH the system than AGAINST it - I mean who wants to feel that dreadful you can't walk, or you're in ICU for days, or you can't breathe, or a combination? And this isn't even including the affects on his wife, kids, family etc.
And yes, how much of this is linked to the silent/stoic/she'll be right attitude that seems to be a male thing - which I don't get myself. I know some men feel they have to appear strong and invincible and all that, but seems a bit silly when facing such a disease like this. So denial has to be part of it.
Whatever it is, and why, I guess is irrelevant... I mean not only is he suffering, but TS and others are through his choices.
Yes, we're all entitled to, and responsible for our choices, it's just difficult to hear about when it seems that things could be so much easier with a bit of effort/thought/planning.
Just my two cents. take with a grain of salt.. wait no.. salt=bad!!
That was one seriously long quote!
I want to ask you something Rich, do you think there would be a hypothetical point IF you were on dialysis that you would stop?
Would you carry on regardless of how well you were ? What about 20 years down the line, 20 years of sitting in that chair three times a week,
knowing there's no prospect of a transplant saving you ? Would you not ever think the easiest course of action would be to give up?
As you say, its harder for a man to admit his feelings and to stay tight-lipped but would you really carry on to the bitter end? Suppose you became swamped with depression? As a female its probably easier to scream, shout and stamp my foot but I know inside how
difficult it is to carry on when your heart's not in it anymore. I've watched other dialysis patients killing themselves slowly as they lose hope and quality of life ...me, I think I'd just walk away before then.
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Sugar - this is something I have actually thought about more than once over the years and it links to something else I wanted to comment on in response to a few of the above posts - last year I met a woman who had a transplant 13 or so years ago - it was working well but there was/is obviously always that spectre of it rejecting/failing at some point. Now as a twist this is a woman I met through a dating site, and it was funny that we only discovered during the chit chat that we had something in common - kidney failure. Anyway the dating part didn't work out but something she said to me (and remembering that I was on dialysis at the time) was that she flatly said to me "I will NOT go back on dialysis. If/when this transplant fails tht's it" and she was absolutely certain of that. Now this is a young lady of around 40 - and that very definite attitude hit me at the time. Now I did not question her on it, or argue it out with her (I respected her choice and didn't feel it was my place, not having been in her specific situation, to even try) but it gave me pause to think, and this is where I come back to Sugar's question about long term dialysis maybe without hope of another transplant etc.
This is so hard, because I often sat in that chair loooking at some of my fellow patients - some of whom, sadly, were not eligable for transplant - either due to age, or other complications. And I would think "How do you come in session after session, week after week, year after year when this is all you have for the rest of your life"? I struggled with this question when I turned it around and said "What if that was me?" (and it still could be at some future point).
I honestly can't answer that question with any sense of what the real answer would be - because I'm not there and I know that if I ever am my personal situation will probably be so different that I don't know how Iwill feel.
Having written THAT as a bit of a cop out I would like to think that because I had a pretty positive experience (all things considered) with dialysis for 4 and a half years - as in I was well enough to work pretty full time, and lead a reasonable life - that I would keep going - specially if I was of an age where I felt willing and able to still contribute. If I felt I had no quality of life then I think yes I would pull the plug - it is all about quality after all.
However I recognise that I am the sort of person that tries to focus on positives in life and grab hold rather than focus on negatives. Not everyone is like that.
TS thank you for your response to my comments. I wish I hadn't hit a nail anywhere though. See it's funny =- hubby doesn't want to die, yet he's doing things to hasten that proicess - and yet no how many times he's told this, he can't quite make the connection that in order to have that quality of life you want, you need to sacrifice some aspects of that (ie: drinking lots, eating junk etc) to achieve that. I had to exercise a fair deal of willpower at times to keep things going, but I always rationalised to myself that "this sucks now, but this is for the longer term good" and most of the time I understood that and put up with the pain looking at the so-called "bigger picture"
I also want to comment that a couple of years ago we had another member in a very similar situation with her husband who was also very non compliant. She chose to leave him - that sounds horrible but those of us who shared her situation and story I think all understood that in the end she had to do it for her sanity (and he was pushing her away as much as anything else). I think she was better off for her choice, but it is never an easy one and brings up all kinds of emotions I would never want to go near - having witnessed part of that (from the point of view of being on here and reading what she had to say) I can definitely understand the suggestion to leave. Sometimes, when it's too hard, you need to think of yourself an dyour own sanity. Maybe a compromise would be to spend some time away? Tell him you're taking a week or two break. Let his mom look after him (and feed him as much junk as he wants and see what happens! :( ) . I won't bother saying it might be an eye opener for all concerned because he's had so many of those now I've lost count.
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Thanks for your honesty x
I think everyone has that point, we just reach it at different times.l I suspect the longer you have a transplant, the harder it is to go back :(
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Tex, thinking about you to-night, just on my second glass of wine. Have you had one your self.
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:grouphug; :grouphug; :grouphug;
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Today, I spent the day doing things just to make ME happy. It was dialysis day anyway so it was mostly napping here. I felt productive! I'm to continue my new trend.
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I've just read this entire thread. I'm not sure I have anything new to say, but I do wonder what kinds of conversations have you had with your hubby, TS?
Everyone reacts to CKD differently, both physically and emotionally. I personally cannot imagine doing everything humanly possible to keep myself well, but there are plenty of people who are not like me and who are awfully cavalier about their health. Why is that?
You're not stupid. He's not stupid. You both know how important it is to go to dialysis. He doesn't want to die, but he is making it hard to live. He knows about the renal diet but chooses to ignore it, anyway. Have you ever asked him why? Do you think that this is his way of channelling his anger that he is no longer in control, that he can no longer do whatever the hell he pleases and has to work so damn hard all the damn time to stay healthy?
CKD and dialysis can consume your entire life so easily. I'm not even on D yet, but every damn day something reminds me that I'm sick. The mountain of pills each day. The Gift of Hope box that comes each month. The constant thinking about this food or that food. It never stops, and worse, it's never GOING to stop. We will NEVER GET WELL. NEVER. EVER. It's maddening. It's infuriating. It's soul destroying. And anger can sometimes result in subconscious self-punishment.
Anyway, I'd be very interested to know what would happen if you sat him down and asked him what he wants. "You have this disease that requires this treatment plan. It is hard work. How do you want to proceed, and why? Let's talk about the consequences of your choices." Try not to be judgmental. Just let him talk about what he wants and about getting what he wants is possible.
He's probably so sick and tired of having so many people telling him what he has to do. While he is lucky to have all of you to care, maybe he is rebelling. The ideal would be for him to decide for himself that he is ready to do what is necessary to stay alive and relatively well.
I apologize for not knowing the answer to this, but is home dialysis a possibility? He might feel like he has more control and would therefore take better to the responsibility. Some non-compliant in center patients can really blossom when they dialyze at home. His control over phos and K would be better, and he'd have more dietary freedom. And he wouldn't have so many people telling him what to do. It might be more strain on you, though, and it would be worth thinking about if this is something YOU'd want to see happen.
Such a frustrating situation. This is all very interesting, though. It reminds me that it is not true that we are given only what we can handle. Your husband is not handling this. He is not coping well. I can't say that I blame him. Life must be so very hard for him. Knowing that you will never be rid of this horrible disease...It's enough to drive anyone into the abyss.
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MM I think you hit it on the spot in some respects - rebelling.
I think I wrote about this in one of the myriad of threads about TS and her wayward hubby. Some people just get so sick and tired of being told what to do and one way to respond is to react like a teenager and rebel.. Whatever you say I won't do just because... and can you rationalise with some teenagers? no.
I think that's going to be the main problem with trying to sit down and talk to him - none of this is very rational and I can see the most common response will probably be to get defensive. I mean why keep hassling me about this? Unfortunately because you care that doesn't matter when the message just doesn't want to be heard. It's almost like the parents in "Peanuts" you hear them talking but you can't understand it - it's just a muffled blah blah blah.
As you say everyone involved are intelligent people and know what the deal is. This isn't an education issue, it's an attitude issue, and only that can be resolved inside TS' hubby.
Anyway texas I'm GLAD you did stuff for YOU today. It seems you can't do much else for hubby at this point (you didn't mention if he actually went or not???) so yes, doing something for your wellbeing might be the best thing you can do at this point in time.
lots of hugs....
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Hi Texas,just sending love and support to you.
Just a thought, but I recall my sister telling me (about her father in law who had terminal cancer) if you don't talk about it, it's not true. In other words, denial that something is wrong. I suspect your husband does not want to talk about it at all. Horrible for you I know.
I also know that another family friend of mine, had terminal cancer last year. I was amazed that the whole family talked in front of him, and included the cancer patient, plans about his funeral. He declined another course of chemo knowing the outcome. His family were devastated at his decision, but as he said, it was his decision. That is where I am coming from. His non compliance, is his decision. Rebellion, denial, all sorts of explanations could be applied.
But for you, the best advice I can offer, is that you can only respond to your emotions, you cannot change someone else's. Learn to change the things you can change and learn to live with those you cannot.
Life sucks. Find some peace within yourself and try and find comfort where you can.
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Richard, I'm not suggesting that TS sit down with hubby and try to RESOLVE anything. Only HE can resolve it. TS needs some answers of a different sort. People can discuss illogical feelings in a logical manner. TS and her hubby need to find out why he is reacting in the way that he is. Maybe getting those answers will change his behaviour, but maybe, probably not. I think if TS could discover the "logic" behind his inaction, she might find it easier to accept.
There are some teenagers you can't rationalize with, but those are usually the ones who feel that they aren't being listened to. Ts's hubby is communicating all kinds of things. He's communicating anger and resentment that he is in a less than optimal situation that he didn't ask for. He is communicating anger and resentment that suddenly he has all of these people telling him what to do, when to do it, how to do it and if he doesn't do it, then he's gonna be in trouble! He probably feels like he is being treated like a child, and his behaviour is HIS way of talking, HIS way of saying, "Screw this!"
How many teenagers do you know who complain, "No one understands me, no one listens to me?" So, maybe the answer is to try to understand, try to listen.
TS, the idea is NOT for you to do the talking. The idea is to let HIM do the talking, and if he doesn't want to talk now, create an environment where he might want to talk later. He's heard everything you have to say. Has anyone listened to what HE is trying to say? I mean no disrespect, but a caregiver is a different animal than a patient. For all the hard work you do, there is a fundamental difference...you are not the one who is sick. You are not the one who has to wrap your head around never getting well. And Richard, you had the hope of transplantation, and your dream came true. TS's hubby doesn't even have THAT hope. It's a lot to take on, and there is a lot of grief and loss involved, and TS's hubby is going to have to wade through the murk.
TS, I don't want to tell you what to do! You've done everything you can to support your husband in every way possible. But I am just very curious as to why he is reacting in THIS way and not in some other way. I'd be very interested to hear HIM tell you what HE wants and what is going on in HIS mind. He shouldn't have to justify his feelings. They are what they are. Even teenagers eventually become rational people, particularly when they feel that their feelings and fears are given validity by the people who love them.
The benefit for you in this, TS, is that you will finally understand why he is doing what he is doing, and that may lead to understanding, acceptance and peace for yourself. But if you don't think you'd gain anything from this sort of conversation, then don't do it. Maybe you can suss out on your own what's going on in that man's brain. Once you think you have it figured out, whether it be by listening to him talk or by osmosis, maybe then you can either help him live or help him die. Or maybe you will come to the conclusion that you can only really help once he really lets you.
In the meantime, just love him and try to remind yourself that he is struggling, and be grateful that it's not you who is sick. Deep down inside, he's probably very frightened, and men aren't supposed to feel fear, but those feelings have to go somewhere. Some people just become inert in their terror. Maybe that's what is happening. I wouldn't blame him. This whole this is utterly terrifying.
Take care of yourself. I wish we could help you solve this.
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Moose-y you are a very wise woman. Your comments really touched me.
I really believe its about control, when your life is out of control or feels like that, you hang on to the things you can control. However unlikely or unhealthy, but because you can at least control that. And one small step from there to rationalize what you are doing. You don't really feel other people's pain because you can't see beyond your own.
KF is a very fragile existence, when everything is going well it can all so easily topple into chaos... and when you're in that chaos you don't believe you'll ever get out of it.
TS. Remember sometimes you have to step back from being a carer and be the person you were before. For yourself as much as him.
Take care!
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First of all ..good for you Tex for having some me time :wine;
Now then, that wayward hubby of yours ! Plenty of people have given you , their opinions and advice but i think your hubby is just being your hubby ! He doesnt have to feel anger or anything else to do what he does. Ok he has had a couple of close shaves but i bet in general, day to day, he feels pretty much ok ? Thats enough for him , he is getting by doing what he is doing and its hard to think things might change ( otherwise we would all live like saints and never do anything to abuse our bodies, i mean all people, everyone) but we all eat , drink , do things that we know are not good for us ! I dont think there is some deep rooted reason or denial (all though you know him best) I just think he is thinking well im doing ok doing what i do, so thats good enough for me !
Ive NEVER stuck to a renal diet in 10 years BUT to balance that im not stupid either, i just have a bit to satisfy my craving , but then again im not on a transplant list, is hubby ? To be honest with that in mind i have thought , well if this is my life now im not going to deny myself , but i balance it by being sensible with it .
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I think KICKSTART makes a valid point. Maybe he doesn't need psychoanalyis but, rather, he just needs to be left alone to get on with it. The question then becomes "Is this good enough?" Maybe it is. Maybe he doesn't need to do more than what he is doing, but I have a suspicion that his body is going to eventually start yelling at him that no, this isn't good enough. Maybe I have missed something in this story, but his physical condition doesn't seem quite stable enough just yet for him to be able to be quite this cavalier. I could be wrong, though! TS, you are the only one who can guage how "sensible" he is. If he is like KS, he will know when to start being sensible. But not everyone can be like our KS!! :cuddle;
Sure, we all lapse. We eat and drink stuff we're not supposed to and we're happy to live with the consequences. But in your case, TS, what do you think hubby expects from you? I don't want to generalize, but a lot of men just do what they want with this tacit understanding that wifey-poo will pick up the pieces should he crash and burn. Does anyone ever notice the paucity of men who post in the caregivers forum? How many men post about the problems they are having getting their wives to take their pills or go to dialysis? Not one that I can recall.
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:clap; How true MM i dont recall hubby's posting either ..well maybe mine would if i had one :rofl;
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Oh, mine would have posted most definitely before my last transplant. Well, actually he hates typing because he is so crap at it, but he would have loved to share some of my more dangerous behaviours with the group, who probably would have wanted to smack me.
Oh well, missed his chance. IHD is my territory!
I do certainly think you have a point though, MM. It does seem to be the males who most often need to be the ones in control and not feel as if they are being ordered around all the time. Both dialysis and transplant can make you feel as if you're a naughty 12 year old caught smoking behind the bleachers. I understand the need to exert your own autonomy, but I think there are more productive and mature ways to do this, obviously, than how TexasStyle's husband is going about it. Still thinking of you, TS. :grouphug;
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Well darn...we didn't get the chance to fuss at cariad. That could have been such fun! :clap;
Sure, there are more mature ways to exercise one's autonomy. Maybe we should list some of them for TS's hubby! Maybe we should just all show up at TS's front door and smack him into submission! He wouldn't dare defy the will of IHD!
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Ihave decided that during the upcoming week I am talk about all these important issues. One at a time, not to bombard him.I think that is the best & hopefully I'll get some answers or at least "feelings" to come out. I having a pretty decent day agin, doing something for myself! Thanks family!
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Ihave decided that during the upcoming week I am talk about all these important issues. One at a time, not to bombard him.I think that is the best & hopefully I'll get some answers or at least "feelings" to come out. I having a pretty decent day agin, doing something for myself! Thanks family!
I know these will be very personal discussions, but if you feel like sharing them with us, I know we'd all be very interested to hear what he had to say. I think it would help a lot of us to better understand the psychological effects of chronic disease on different kinds of people. I'd bet that in the not too distant future, we'll get another new member whose husband is very similar to yours, and your experience will be so helpful! The more YOU learn, the more we learn. But if you don't feel right about "reporting back" to us, then don't. We don't want to intrude.
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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?
A girl in my center (she was 20 years old) died recently from Uremia. It is a build up of toxins in the body caused by ESRD and Kidney failure.
YOUR HUSBAND :Kit n Stik; YOU
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I had the same train of thought as your husband when I was first back on dialysis. i drank that crap, tastes horrinble and makes you poop like a goose. i didnt realize it until my wife pointed out when i skiped dialysis i became easily confused, quick to anger, loss of coordination and on and on. It took my wife sitting down with me and listing out what was happening. I guess I felt I was different than "those sickly dialysis patients". It was a real wake up to hear my wife tell me how bad I had gotten. My potassium was 8.9 my PTH was 1400. my pottasium was 10.0 creatnin in the 20's and my BP was running 180/120's. I thought I felt fine. All the above is now in "normal ranges" and I am on the list for transplant and do not miss my treatments. I feel 1000% better than when I thought I was "fine". your husbands wake up call will come, just hang in there.
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Holy crap, I can't believe you re alive w/ that K level! My husband went as high 7.9 when he went into paralysis. He argues w/ me that "no, it was 7.8 and every little bit makes a difference with those numbers". lol I said "Oh, honey, it just doesn't even matter at that point". Anyway. You make a very point and I do notice a difference inhim. Mostly he sleeps even more, and on occassion vomits often. Yes, I think bringing these things up will help him understand the difference in when he goes and doesn't.
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Sorry I also wasn't trying to tell TS what to do. The only thing I would add to the "discuss with hubby" topic as that it's great to let him do the talking and sharing etc but he may not WANT to talk about how he feels etc - he's probably sick and tired of people asking him that stuff, and even if he does want to share with his beloved, to communicate, etc he may not be emotionally, mentally be able to put into words WHY or WHAT in terms that would make any sense.
It's like this one time many years ago I started living with my then gf. On the surface it was fantastic - there I was in my own little flat with this girl who was awesome in many ways and it seemed like everything was set for mucho happiness. Yet, I felt it was *wrong* and it didn't feel comfortabel to me. My brain was telling me I was an idiot of course, yet the feelings continued and got worse, yet I simply could not pin down WHY I felt that way or what it was that was causing it or bugging me. In the end I had to tell her that I didn't think it was working. She immediately thought that meant I'd found someone else (!) and got very upset, and due to my inability to verbalise any reasons for my feelings I could sort of understand that!! I felt absolutely wretched at the time because I hadn't found anyone else (I wasn't looking or interested!!) but yet, all I could say was lame stuff like "It doesn't feel right" - well yeah, I'd think I was a loser for saying that too! It was only much later that it came to me what the "problem" was - it wasn't her, it wasn't even me that much.. It was that I had only recently moved out of homw myself and was still getting established in a new life in my own place. Suddenly I have another person there 24/7 and what I was feeling was that I had no place to "retreat" to - my own space if you will - and that at that time I clearly wasn't ready to be living with anyone else when I hadn't got used to living with myself. Of course, it was much too late by the time I figured this stuff out.
The other point that someone above made that I totally agree with is that when you're skipping D and toxins build up, it can cause confusion and a loss of mental faculties.. and this could definitely be contributing to TS' hubby's behaviour.
I hope things are better right now since this is a bit old now.
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That's true...he may not want to talk about it. If that's the case, that's fair enough. Those are not easy discussions to have, especially when you are not feeling well. Such introspection takes more energy than a lot of us have. Good point.
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To be absolutely honest we didn'ttalk about it this week. Each time he came home from D he went right to sleep for most the day. This morning he was very lightheaded. Took his pills and went rigt to sofa where he feel asleep with coat and hat on for a spell. He said they kept him a bit becuase his BP was low. Both numbers were very low. I don't know the numbers. Maybe is just tired of...being tired. I can see that but I still wish he'd try to see if can change the way he feels by changing his lifestyle. Just a try. He is making some steak right now for dinner. I'm not sure what else. He is I must say an excellent cook. If he gave it a shot he might find it's a little fun to be creative with the renal. Then he's really tired after he cooks. And the cycle begins..
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TS:
:grouphug;