Husband 45 with no dialysis for 6 days-says he's quitting

[johnswife]

Hi guys. My husband John who is 45 has missed his last 3 dialysis sessions and says he's not going back. He has been on hemo incenter dialysis for 3 months and he hates it. He usually has to be wheelchaired out-very weak, sometimes his body hurts all over so bad that he lays in bed on pain meds for 1-2 days. He has a lot of other problems too; high blood pressure, diabetes, heart failure, neuropathy, retinopathy, copd. He's miserable 90% of the time and stays pretty sick. He has a fistula in his arm that didn't mature enough to use it, a catheter in his chest that they do use, and 3 weeks ago put catheter in belly to start home dislysis. After they put the belly one in he got very sick//was rushed to hospital the next day with 104 temp, 219/112 Bp, and only 86% oxygen. They said he has phneumonia and an infection. They kept him for a week. Now they are telling him he could have an infection in the chest catheter and maybe the belly one as well. They're wanting him to have them both taken out and start over with new ones put in. He said he's had enough and his quality of life is not getting any better; he just lays around and doesn't do much. Well he can't do too much. He can barely walk, can no longer see from retinopathy, legs in constant pain, and he is refusing to go back. I'm sure his in center social worker will be around Monday. She said she's going to have to call hospice if he doesn't start back and he says he's not going to. He says it just hurts too bad-he thinks he will last months with nothing. He had just 5% kidney function when he started. His last labs were high phosphorus, 4.9 pottasium, elevated white blood count.

I want him to go yet I also hate seeing him suffer and being miserable most of the time. I don't want to let him go yet feel selfish for wanting him to stay.

[Gonyeau]

I am so sorry. I hope that your husband can make a peaceful recovery from this set back
My prayers are with both of you

[Whamo]

I feel for you.  You are in a horrible dilemma.  I hate to hear about anyone suffering, but one also hopes to live on. 

[cassandra]

I'm so so sorry to hear that JW. Don't know what else to say. I wish you both all the strength, and love in the world.

love Cas

[johnswife]

Thank you guys so much. His feet are starting to swell and he's very sleepy today. He hasn't eaten anything since noon yesterday and barely drank anything either. He sat up and talked for about 45 minutes earlier and was in good spirits just very tired. I'm hoping the social worker can talk him into starting back up and hope its not too late. His last dialysis was only 3 hours on Monday and he usually does 4.1/2 hours so it wasn't a full session.

[willowtreewren]

I just want to wrap you in arms of support and sympathy. I cannot even begin to imagine what you are going through, but I understand that it is difficult for you.

 

I wish there were something we could do for you.

Aleta

[Bajanne]

I am really feeling very hurt for you and John. Please be assured of my caring thoughts and prayers

[Poppylicious]

Hi John's Wife.  I'm so sorry that you're having to deal with this.  I have no words of advice though, but send you many *huggles*.

[johnswife]

Thank you all!! He's still about the same; getting weaker and a lot of diarrhea. He's sleeping peacefully at the moment and the kids are gone to church so I'm just taking a few minutes to rest and digest all that is going on. He's a very strong willed stubborn country boy and I'm hoping he is strong enough to pull through until we can change his mind. If we can't change his mind then I will respect his decision. I hate to think of him not being here but at the same time I know the pain his poor body has been through and don't know how much more he could possibly take.

He's been by my side for 25 years and always will be in my heart.

[boswife]

This breaks my heart to hear.  I dont want to have to be there ever but what choice do we have.  We need to pull strength from a place we dont know we have until we have to find it.  Im so sorry, and pray for healing or peace.  Sending hugs as well... 

[kitkatz]

 

[Sue]

Such a difficult place to be, sending you both strength and peace.......

[jbeany]

I hope you both find whatever peace you can.   

[billybags]

Hi Johns wife, welcome to the site. 

I am so sorry that you are both going through this, I can see Johns point of view and I can see yours. Dialysis is not an easy path, you do get sick, you do get infections, to be honest it can be a pain in the ars*  but then there is the other side where you get days when things are not too bad, you except what you have and get on with it.  John is still young, he is probably scared of the un-known  like most of us were. I am the carer for my husband and it brakes my heart to see him in pain, but like you I want to keep him here. Once they sort out the infections he will feel alot better. Tell him to hang in there, tell him you need him with you. It will get better. Is there any chance of getting a transplant.

[johnswife]

 Just an update, johns still here first! He still has not been to dialysis and refuses to go back. To answer your question no he is not a candidate for transplant. John has alor of medical problems and they say he couldn't take the operation. He's not had dialysis for 8 days now. He is weaker today, has no taste at all and bad muscle cramps. I have talked him into seeing the dr tomorrow.

[Flyinganchor]

Hi Johnswife,

THere's probably nothing we can say that has not already been said but I would like to add my small contribution in the hope it may help your husband. From personal experience I think your husband needs a mental hook to give him something to hang on to no matter how bad it gets. I do know what I;m talking about I have been there and bought a mug. Being blunt, as far as I can gather, nobody has told your husband he is terminal, that was the key for me. He can take the attitude that no matter how bad it gets that one day he will feel better than he does now. His problem is mechanical for want of a better word and a lot of the trouble can be fixed. It will help if he has a goal to aim for, a wedding to go to that sort of thing. He must believe that he can handle whatever is thrown at him, in this case giving up is not the answer. It will get better. Try to get him to do one thing, anything
today that he could not do yestertday ,tie his shoelaces-anything, just one a day and it will add up.
I hope this helps somehow and you are in my prayers. As they say don't knock it till you've tried it.
God bless.

[amanda100wilson]

I feel for your husband, I really do, but I feel for you too.

If your,husband wants to die, why is he doing it the hard way?  Why not go into a hospice and let them manage the symptoms?  The fact that he isn't suggests that there may be a lot,of depression that is causing some sort of denial state.  Does he actively say that he wants to die?  Does he acknowledge that he will die with his current course of action? 

I don't mean to sound mean but perhaps you are being too nice to him.  Tell him what a selfish b****** he is is being.  He is young and has children that love him.  Tell him how you feel too because I am sure that you are frightened and angry too.  Don't let him go without a fight.

[johnswife]

We are now on day 10. He's still refusing any medical care and still no dialysis. His condition is about the same; no better nor seems to be any worse. I say seems because I'm sure he's much worse than we know. We've all talked to him; he I believe is just tired of being sick and he's ready to go.  I don't know what will happen next but he doesn't seem to be in any pain these last 2 days; just sleeping a lot.

[paul.karen]

This is the worst part of having such diseases.  I'm sure he loves u more then anything in the world.  Even life itself.  Noone can tell how another person feels yes we can hues and wonder but we can never know.  Much like a man will never know the joys of giving birth, best example for now sorry.

I'm ready to go.  If not for Karen is b gone long ago.  I don't want to leave her alone.  So I suffer on and for the most part am happy.   But the inner me does often think if I left the world earlier rather then later she could make a new life and love again.  If I hold out till later she may live alone the rest of her life.  And that makes me sad.

So just a different view of the inner struggles of a patient who truly is on death watch and being kept alive artificially.

With that said i hope he realizes even though sick and dialyisis does suck.  He could if willing still have many many good times to come if he decides to stick around .

prayers to u both

P&K

[johnswife]

He does say that exact thing. He says he needs to go so the rest of us me included can still have a happy life that doesn't revolve around doctors and being so sick. He feels like he's a burden and that he's just holding me back. I tell him that he's def not a burden and my life is with him and always will be. We've been together 25 years. And 6 children---this is my life and don't need or want a new one!

Today is day 11---anyone else hear of someone going off for this length of time?

[Lillupie]

yes Johnswife,
 I have heard up to two weeks without dialysis, but it also determines how much he still pees and what he is eating.
Im sorry your husband wants to give up. Im 29 and there are days I want to do the same thing.
Lisa

[Grumpy-1]

While I'm not in the same situation as John, I can relate to his feelings about being a burdon.  I truly feel that if I become a burdon to my family (to the extent of not being able to do any for myself) then I will consider taking the same road John is.   

Reminds me of my dad.  Dad was living with us for about a year when the Dr told him he had colon cancer.  The Dr gave us all the options, the pro and cons of each and then dad ask "if I go through these procedures, what is my quality of life after?"  He was told that it wouldn't be much different than the cancer was now.  Dad didn't have much energy to do much, did eat very well or sleep very well at that point.  So dad decided that all the procedures was not worth the extra pain and suffering and decide to let it run its course.  He passed away about 2 weeks later.    While it was sad to lose him, I respected his decisions.

Same with John, While it is hard to let some one go, if that is what John decide, then let it be.  I'm not sure I agree with being a burdon on family as you said you been married to him 25 years - if you can change his mind on that maybe he will decide to stay around a bit longer.   Grumpy

[johnswife]

Yes he says he's ready. He's been in the hospital up to a month at a time because he gets bad infections. He's actually had 4 surgeries just over what would start out as a bump. He had one that got so bad they removed enough of the back of his neck/head that you could literally put your hand inside his head. He's been through more than I could ever endure.  We love him very much and while we def don't want him to go we also have seen him go through more than anyone should.

Now for how he's doing. He feels very ill this afternoon, throwing up and said just feels crappy and very tired, sleeping a lot but no pain so that is good. In 2 more days it will have been 2 weeks since last dialysis. I tell him at anytime he can change his mind and I will rush him to nearest hospital but he really seems at peace with everything so I'm just going to be here to support him no matter what he decides.

[kporter85db]

You are a good wife, Lisa.

I'm a similar age and have similar health issues as your husband, although mine are more manageable and I'm doing relatively well. If I were to make the decision to stop dialysis I would want my wife to support me as you are him.

I will say that once I got the bugs worked out of my dialysis my health improved dramatically.The year leading up to dialysis I was in the hospital three times for over a week at a time and I was in the Emergency Room at least once a month. I was in a bad way. I'm glad to report that I have had no hospital stays in the over a year that I've been on dialysis.

[justjen321]

There isn't much I can say here, but felt compelled to respond. I'm so sorry for what you are all going through. There isn't anything easy about this disease, certainly not when it comes to making decisions about the quality of life. Wishing for strength, peace, and comfort for all of you through this time.

Jen