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

[Grumpy-1]

May be true, but I've heard stress can do things to our bodies that we don't understand.  While maybe not a direct cause, it sure can contribute to any illness, and such.  Anyway, wishing you the best on your labs.  I like your thought that you can't be sick - don't have the time.  Think positive.   Love Grumpy

[MomoMcSleepy]

Poor thing, I hope you're feeling well soon and that it is nothing serious.  It's awful to look for breathing first thing in the morning, but I would be doing the same.  I can't believe he worked on his truck!  It sort of reminds me of Goofynina's story.  She didn't believe that her condition was that bad and was in bed all day, cold and had a lot of water weight, and her mother threatened to call an ambulance.  Her function was very, very low by then, too.. They started her on emergency dialysis and couldn't believe she was alive, I think.  Doctors often can't believe it when we're still conscious or alive, within we just intervene a lot of times and don't really remember what courses illnesses tale anymore.
 


I, too, hold me breath before reading this thera.  I came online to see how you all were doing.  Take care of yourself, I'm sorry that you're suffering.

[johnswife]

Just a virus on my part do feel like crap but will be fine. John was super sleepy yesterday and had a lot of pain last night. The doctor gave him some pretty good pain meds though so he slept fine after taking them. He's def starting to swell. Belly is very swollen as well as legs, feet. For the most part he still feels ok though. Last night he said I really don't want to die but I can't stand the pain of living either. What a statement I thought. It's August 17th and I think it's been 31 days with no dialysis.

[jeannea]

I feel bad for all of you. I can see his point of view. But I am sure it's very hard on you too. I'm glad he has the pain meds for comfort. All you can do now is love him.

[Rerun]

He could go into dialysis and have them just do a PUFF.  That means they just pull fluid no toxins.  That would at least take some of that swelling down so he is not so miserable.  That is what I would want.  Let the toxins kill me but don't let me drown.

[AnnieB]

I have been thinking about you and wondering how you have both been doing. I don't know anywhere near as much as the rest of the people on this site, but what Rerun says sounds like it would help, if they can remove some of the fluids that are making him feel so miserable. This must be so hard for you; I am continuing to send healing thoughts in your direction.   

[amanda100wilson]

Johnswife, your comme ts about saying that he doesn't want to die/doesn't want to live sounds awfully like a bargaining statement nada denial which happens as a step in the grieving process.  do you think his refusal to do Ida
hiss is a type of denial and his attitude could be depression, which is treatable.  how does he feel about leaving his children behind?  i am not trying to judge him because I know that he has a lot of other health issues but it does concern me that he may not be thinking straight, and having had depression, I know how hopeless for the future that can make you feel.  would there be any chance for him to do home HD?  this is so different from in unit, as day is from night, or would PD be an option?  I would live to hear that he has had good dialysis so that he can see the difference.

[cdwbrooklyn]

Okay….I was not going to comment on this but to penny back off of Amanda100’s post.  I must agree with Amanda100, I think he is in a state of depression.  I can truly understand because I was there one time myself.  I’ve been in-center for 11 years and I was tired.  I was ready to give up because I couldn’t take it anymore.  Not so much of the treatment but the way patients were treated in-center.  The same routine over and over and over and over and over again, now don’t get me wrong some patients do well and very satisfied, I was ready to end it all.

 As I was searching through IHD, I do almost everyday but don’t really respond, the thought of Nxstage came to my mind. I told myself I will try this and see what happens.  I’m so glad I made that choice.  It was the best choice I made in years.  Now my whole attitude and physical fitness have changed.  I no longer feel like giving up.  I am a lot happier and live my life a whole lot better.  I feel like I’m back in the game again.  Now, I’m not 100% there but I’m 95% and that good enough for me. 

That said; please try to talk to your husband about other options  Now, if you tried all options and your husband still decides not to give in, at least you know you’ve tried.   I think about him a lot and wish I was close to you so I can talk to him.   I will continue to keep your husband, you and your family in my prayers. 

[billybags]

johnswife, thinking and praying for  you both.

[AnnieB]

 

[RichardMEL]

I don't really have a lot to add here.  do have a number of thoughts on the situation - some of them conflicting - so I think I will just add my general support. It must be hard, in a way, to emotionally come to terms with a decision and an expected outcome, and then not have it happen as you expect - I am not sure if that is a blessing or not because there are so many sides to that one (for example, the joy that he continues to live mostly OK as opposed to the pain he is in as opposed to your own coming to terms with the choice and so on). I simply can't imagine.

You mentioned his swelling from fluid - is he able to move a lot still, walk around etc, or is it all too hard/painful now?

You are indeed very brave - both of you I think.

[johnswife]

Well day 35 and still going. To answer a few questions. He can walk and get around just a little unsteady but he already was like that. He's still eating although not much because he can't taste anything he eats and he either throws in back up or has diarrhea within 15-30 minutes. His body def gets rid of anything that goes inane doesn't waste time. About being depressed; I'm sure he is but here us his thought. He hates dialysis and he refuses to go back on hemo. It was simply too painful for him; his bones ect would hurt something awful and he was sent to hospital on more than one occasion because of Bp while on dialysis. He at first got the fistula and it's 7 months old, not mature and too small so can't use it without having it redone ( he doesn't want to do this) he was incenter hemo for 3 months in constant pain but with the hopes of doubt pd home dislysis. He finally gets his pd catheter put in 2 months ago and it wouldn't drain correctly not to mention it was infected within a week; all this time he's still suffering through the hemo and hating every day when he hears that a culture shows his chest catheter is septic and needs to come out and a new one put in. It was at this moment he said no I'm done---he said however long his body lets him live is what he's got but he refuses to go back on hemo and tired of trying; against anymore surgeries ect.

So while he wants to live he's going to do it as long as he can on his terms and he said for him life on hemo is no longer an option nor is anymore surgeries. He's had trouble with about every surgery with infections and so on.

If any of you get a chance and get on YouTube look up diabetic infection head--something like that. That's just a but of what he's been through with infections. It's very graphic and shows the process of a simple infection for us and what it does to John.

[johnswife]

YouTube video is done by kkat123

And title is huge infection graphic.

If you want to see it and have trouble you can type in Kelly at dentist on laughing gas. That's my then 9 yr old daughter--just click other videos and you will see johns infections and just some of what he went through.

[cdwbrooklyn]

I sincerely understand and wish you and your family well.   No one knows what another person is going through unless that person has experience it his or herself.   Sorry things did not work as he planned.  I truly know that feeling as I, too, has a lot of plans after receiving my transplant when I was called; unfortunately, I didn't receive the transplant and my plans went down the drian.  Everyone has their own way of dealling with things.  I will still keep John in my prays.   

[okarol]

 

[boswife]

oh johnswife, i just went and watched your adorable "then" 9 year old daughter on laughing gass.  Precious little heart..  And then................ oh how awful the infection of your dear John.  Bless his and all your hearts, how very awful!!  I hope you are all in peace with whats going on, and pray for comfort in it all.   

[amanda100wilson]

I watched the video, and poor John really hasbeen through so much with all those infections, and it doesn't sound and look as if it was dealt with very well.  that doctor who sliced into his neck with no pain meds. should have a taste of her own medicine, that is inhumane in my view.  with all that going on, I can understand why he feels like he does.  I think that it is a shame the way that the medical staff behaved when he went to have the catheter out.  my thoughts are with you both.

[johnswife]

Hello everyone. I don't even know what day it is I think 37. Last night was the worst ever; John threw up all day yesterday-he couldn't hold down anything. He was hurting real bad last night all over! His head he said felt like it was exploding , his guts he said were hurting something awful, he was itching from head to toe, couldn't sleep, anxiety was driving him 1/2 crazy. Needless to say it was a horrible long night with no sleep. His feet and lower legs are getting swollen and tight. He's sleeping like a baby now after 3 Xanax through the night. He said last night he just wishes it would finally end. He said he's in purgatory---not living but can't die and he's in misery.

Here's hoping for a better day and night!! Well I'm gonna try to catch a little sleep while he's out. These 2-3 hours of sleep a night and really rough and it's hard to be understanding and kind when you are so tired yourself. After rubbing legs for 3 hours last night I finally got him to sleep and went to bed for 45 minutes!!!! Yep he woke up again needing back scratched for another 2 hrs. I know he's in misery so I try to understand but man it's hard!! I think we need to call hospice at this point but he thinks that's an intrusion on his last days and just wants family around. Another few nights like these and he may want someone else --- I get awfully grumpy on no sleep day after day. But I want to be there for him in everyday and def don't want him to ever feel like a burden so we will just deal with all this as it comes. One day at a time and one breath at a time.

[monrein]

   and I'm so sorry that you're all going through this.

However, please excuse my bluntness but it feels very unfair that John is rejecting any kind of professional help at this stage of things.  You sound exhausted and should not be expected to rub and scratch for hours.  Just not fair and I say that with full personal knowledge of ESRD itchiness, cramping etc.  I understand his wish for it all to be over but it doesn't need to be quite this difficult.

 

[AnnieB]

I agree with you about having Hospice come in at this point. It sounds to me that at least some of the things he is suffering through right now would be able to be alleviated (anxiety, pain for instance). Hospice nurses are trained to deal with end-of-life care, as well as being (hopefully) sensitive to family needs as well. I was a Hospice volunteer for a number of years and can vouch for the need of caregivers (that means you, in this case) to not forget to take care of themselves also and especially at this time....the point being here, that you really don't know exactly how long this will go on. It may be true that it will only be a few days - but it's already been over a month when the doctors were not giving him a fraction of that time. It could be awhile yet.

You can still be there for him; just don't exhaust yourself so much that that becomes an impossibility. My  (especially after seeing my sister go through something similar).

Anyway, you have many friends on this board and elsewhere who want you to know that they care and are supporting you and John whatever happens. 

 

[willowtreewren]

Please, please have Hospice help John (and You!) through this difficult time.

 

I've been thinking of you....

Aleta

[Fatkidney]

I'm so sorry you're having to go through all of this, both of you.  I wish your husband would let hospice come in.  Even just to give it a shot.  I messaged my sister-in-law, who manages a hospice organization, about resources that might help shed some light on how hospice can assist you.  Here's one link: http://www.nhpco.org/i4a/pages/index.cfm?pageid=3254&openpage=3254

She's supposed to get me some more information.  I'll send that along when I get it. 

[amanda100wilson]

yes, hospice care.  it is not just about John and you have children to think of too.

[Chris]

Hospice is for you, not him is one point to make so you can get some needed rest. At this rate exhaustion can be doing you harm in the long run. You need to get out for a bit to while someone else canwatch over. It's not like they will be there 24 hrs a day unless specified.

[boswife]

all this suffereing on both of your parts is not necessary.  It's hard enough on your heart(emotionally) but when the staying up takes over, it's not good.  Please, and i believe they dont even have to announce themselves as hospice.  At least they dont here in cali.  When i needed for my mom (though she passed before i actually got them) i didnt want my mom to know and fear that she was this close to the end.  They said they could come in as visiting (i thinik nurses??, or just companions) and do their magnificent work like that.  Please consider... I dont believe tonight will be anybetter w/o them   Im so sorry... Sending love and prayers..