not going to dialysis

[KICKSTART]

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 .

[Henry P Snicklesnorter]

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[texasstyle]

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.

[willowtreewren]

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.

 

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 

[texasstyle]

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

[monrein]

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. 

[KICKSTART]

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. 

[willowtreewren]

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. 

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. 

Aleta

[willowtreewren]

PS

I agree 100% with Kickstart!

[huldafolk]

HEY Woodsman;  Try taking the powder with Mountain Dew.  It bubbles up at first then goes down fairly well .

[texasstyle]

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.

[boswife]

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  ( 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    and hopes for a brighter day....

[RichardMEL]

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.... 

Monday's been and gone so one presumes he went to D and....??

[looneytunes]

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.   

[Sugarlump]

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.

[KICKSTART]

TS , so glad you knew my post wasnt directed at you 

[texasstyle]

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

[Sugarlump]

Hey this is the one place where you are never alone and never short of a shoulder to cry on x

[natnnnat]

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  for you both. 

[natnnnat]

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.

[rsudock]

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

[texasstyle]

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.

[Henry P Snicklesnorter]

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[Sugarlump]

  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.

[KICKSTART]

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.