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

[johnswife]

No he's not on any antibiotics. He's not taking anything except Xanax to sleep.
He feels good today just weak.

[Gerald Lively]

What can I say?  I was in the same position as your husband minus all of the other problems, just had cancer and renal failure.  After eight months I quit dialysis, had an immature fistula, and just had had enough.  There was no changing my mind.

But my timing was very good.  Immediately after quitting I tested and had a 20% kidney function.  It has improved since then.  What's the point?  His mind set.  I know right where he is at.  I have felt the subborness, the rancor towards the Doctors and nurses, the "I don't give a damn" feeling because I'd rather be gone than be punished by the medical community (treatment).  And, yes, when the toxins get heavy you do go out of your head.

He may not be thinking correctly.  At some point you may have to think for him.

Sorry this is happening to someone, anyone!  God bless you.

gerald 

[johnswife]

Today is day 24 or 25/--I'm losing count. He's still going and not feeling any worse. His labs are horrible so I don't know how to explain it.  He actually says he doesn't feel too bad and he's still eating/peeing, ect.  He's thinking he may go months like this which I know is highly unlikely with 3% kidney function but with my husband anything is possible.  The doctors sure didn't think he'd last a week or 2 at most.

I'm just glad he's here. It's hard that the first thing I look for when I open my eyes is him breathing but that's my reality at the moment.

Thank you to all of you on here; you have helped me a great deal just to talk to someone.

[Wat76]

You are in my prayers. Tough but hang in there.

[gothiclovemonkey]

i cant imagine what either of you are going through. I know thats a very hard decision to make.
I quit for a little over 2 weeks and felt fine, and i ate and drank what i want.... at the last day i did have shortness of breath and all that jazz, ended up going to the hospital then. So i do think that its very possible, especially if someone watches what they are eating and drinking, and they still pee, then it could potentially be a rather long time.

i hope things go as smoothly as possible for everyone 

[chiawana]

I can't imagine how strong you are, John's Wife, to endure this.  Your love for him is so beautiful.  My husband was in the hospital a couple of weeks ago, he coded and they had him on a respirator. The first day he was not entirely sedated he wrote me a note that said "kill me." That night he asked one of the nurses to remove the respirator and let him die. He has been through hell with his health, like your husband, and I knew he was just about fed up with the struggle. But they never gave me any reason to think he wouldn't recover and come home. If they had said he wasn't going to recover to any decent quality of life, I wouldn't have fought him. I know he wouldn't want to have been kept alive artificially. But he got better, is now home and doing a little better each day. We do home hemo and he's doing all right. He had to have two stents put in and they broke his sternum but he is able to get out and do things, though he tires easily. I think I did the right thing - this time. I dread a situation like what you are living through right now, and I hope if it happens I will be strong enough to support him as you are doing for John. He is so lucky to have a wife like you.

[billybags]

johnswife, You are being so brave for your husband. I know we are all thinking about you both.

[AnnieB]

Like everyone else on this site, I'm really in awe of how strong you are to go through this. Not sure you even necessarily see that right now, but your love is such an incredible gift for him. God be with you both. 

[jbeany]

 

[frankswife]

 

[MaryJoe]

Just stopping by to let you know that I'm thinking about you, and still praying for peace and comfort for your family.   

[jessicalynn42]

   my thoughts and prayers go out to you. i understand what your going through. My friend gave up and i sat with her for 3 days till she was gone. Hospice helpes alot. I do miss my friend but i also understand that the pain can be very bad. I just wish both of you do find peace. xoxo

[Fatkidney]

You and your family are in my thoughts and prayers.

[amanda100wilson]

I feel for you, I really do.  given that it has been so much time without dialysis, it suggests to me that maybe,he was started on dialysis too soon.  it sounds like he could go on like this for some time, although the fact that he is sleeping a lot does suggest that he is borderline for dialysis as I am sure that his eGFR testifies to this fact.  I imagine that the strain must be especially trying for,you.  how are the children dealing with this?

[boswife]

just sending support and   

[willowtreewren]

I worry every time I come to this thread....

I have been thinking of you. 

Aleta

[lmunchkin]

Praying & thinking of you and your family!  It has to be so hard.  Please, do not rule out Hospice.  They can really help out in times like this. Please tell John we are thinking of him!

lmunchkin

[Roxy]

Still thinking about you and your family. Praying and sending hugs 

[MommyChick]

Sending many thoughts & prayers your way as well as 

[Clara]

Prayers for you, your husband, and your family.  God bless you. 

[Grumpy-1]

Has any one heard from Johnswife about is condition to date?  Grumpy

[johnswife]

Can you guys believe---30 days (I think) and no dislysis. To respond to one of the earlier questions. My husband is a diabetic and they say he should have started at 10% function but he waitied until 7 % and he's now at 3%. I don't know how he's going with that little of function left. He does still pee 1-2 a day so I guess it's filtering just enough. He's gained 5 lbs this week though so the fluids are starting to build up. He had a good day yesterday and was outside working on his truck. But he came in so weak he could barely stand. He's just a fighter is all I know!!! He's having labs done again today to see what his no.s are so I will let you guys know if they are miraculously better or worse. I'm betting the 5 lbs in one week is def not a good of what they will show.

On another note-I had a pretty intense headache for a week plus just feel like crap so went to dr yesterday and my white blood cells were 2,000 which they said was really low so I have to go back and have them repeated today. From what dr said that low of WBC can mean bone disease, leukemia, and a whole bunch of other things. Some were obvious like bronchitis, phneumonia-ect which of course I know I don't have. So hoping for the best with both labs today!!!!

Hugs everyone!!!!

[Grumpy-1]

Damn girl, you guys just can't get a break.  John's multiple problems and now yours.  Just wondering, do you think your condition is a result of the stress of caring for John?  Grumpy

[johnswife]

Oh and just had to tell ya the dislysis center called here by mistake asking for another patient!! When I told them who they called they just said he's still alive without any treatment. Very surprised people. He's also started getting his taste back---very odd. He hasn't been able to taste food for about 5-6 weeks and now starting to taste some stuff. No telling with him. I tell him (jokingly) he's a freak of nature. The doctors can read their books all they want and learn all they want and then they meet JOHN!! He defies everything they tell us and I love
Him for being such a strong stubborn a$$ that he is.  They said he was septic 3 weeks ago and would go within days without antibiotics through iv. He's not taken anything of any kind.

I know he's slowly dyeing and I'm not saying that's not happening but he's going in his own time
And in his own way which i think is just his way of having some control over his life and care. I'm just proud of how strong he is and if he decided tomorrow to go back on hemo I'd be right behind him; not that I think that will ever happen but maybe he's sticking around for a higher reason and maybe he's got a whole lot
Left and someone bigger than us is seeing that he gets everything done.

[johnswife]

Damn girl, you guys just can't get a break.  John's multiple problems and now yours.  Just wondering, do you think your condition is a result of the stress of caring for John?  Grumpy

I don't know---they said low WBC is not a condition of stress. I've had headaches for years!!! I'm sure it will be something small--they are worried a tumor because of severe headaches and the body aches, ect. Maybe today's lab numbers will be back to normal. Fingers crossed!! We can only have 1 sick person at a time and it can't be me. I don't have time right now to get sick!!!