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

[johnswife]

Hello to all of you wonderful friends. I just read all of your kind words and they mean alot. First John is still here--I don't know what keeps him going but he's def a strong man. He is getting alot of fluid in his lungs now and coughing alot. This just started yesterday. He's also very swollen. But he's not in any pain other than sore from coughing. I'm sorry I wasn't on here in a while but first we moved again and took a while to get Internet back on. Second I've been trying to do odd jobs to get us through since I can't work outside the home because of John.  I lifted a heavy transmission yesterday and back is def out today!! It's amazing what you can do when you have to. I pressire washed a house down the street last week and it went pretty well other than bleach burning my skin up. (Next time ill use gloves!!) anyways just trying to make ends meet so John doesn't worry about me and the girls. I found out ill be having a new grand daughter in December. My first granddaughter. I hope johns around to meet her but with this fluid and horrible cough I'm afraid he may not.

I loved reading all the messages and appreciate all the prayers and thoughts. They mean alot to us!

Thank you all and I will try to not wait so long for the next update. I think it's been 12-13 weeks now. Somewhere in there.

[justme15]

thank you for sharing with us.  You are so strong.

[Lillupie]

Hello to all of you wonderful friends. I just read all of your kind words and they mean alot. First John is still here--I don't know what keeps him going but he's def a strong man. He is getting alot of fluid in his lungs now and coughing alot. This just started yesterday. He's also very swollen. But he's not in any pain other than sore from coughing. I'm sorry I wasn't on here in a while but first we moved again and took a while to get Internet back on. Second I've been trying to do odd jobs to get us through since I can't work outside the home because of John.  I lifted a heavy transmission yesterday and back is def out today!! It's amazing what you can do when you have to. I pressire washed a house down the street last week and it went pretty well other than bleach burning my skin up. (Next time ill use gloves!!) anyways just trying to make ends meet so John doesn't worry about me and the girls. I found out ill be having a new grand daughter in December. My first granddaughter. I hope johns around to meet her but with this fluid and horrible cough I'm afraid he may not.

I loved reading all the messages and appreciate all the prayers and thoughts. They mean alot to us!

Thank you all and I will try to not wait so long for the next update. I think it's been 12-13 weeks now. Somewhere in there.

Wow Im so glad that you finally posted. You had us worried. I was actually going to send you an e-mail. I feared the worse. Yeah its been since July. Wow and he is still here! He is still not willing to start all over?? Its not too late is it?

Lisa

[boswife]

so good to hear from you and know your are on all our minds every day wheather we post or not.  Prayers and hugs, and all good things to help you get through all this.  Why oh why does it have to be so hard    Sending love, and 

[Jean]

That is really amazing.
Thanks for posting and letting us know.

[okarol]

  Hi johnswife, thanks for updating us. You moved in the middle of all this? Wow!
Sending you lots of hugs! 

[willowtreewren]

John is remarkable. What a testament to the human will. 

And you are amazing. You deserve a medal for your dedication and perseverance. 

I am sending warm hugs and good wishes to you both.       

Aleta

[MaryJoe]

johnswife - Thanks for letting us know what is going on with you and John.  I'm glad John is still with you, he has an amazingly strong will and clearly is not ready to leave you and the girls yet.  I'm relieved to hear he is not in any painand I pray that this time can be as peaceful as possible for all of you.

   Speaking of strong... did you say you lifted a transmission and pressure washed a house?!  That gives whole new meaning to "odd jobs"!  My body aches just hearing about it.  We never know all that we're capable of until we have to do it, do we?  Please be careful that you don't hurt yourself.  I know you are trying to ease John's mind, but putting yourself in traction is not the way to do that.

Congratulationson your 1st granddaughter!  That's a Christmas present you can really look forward to!

Please tell John and the girls that we are thinking of them and sending lots of hugs and positive energy to you all.   

[Poppylicious]

Sending you many *huggles* ... you're both so amazingly strong!

 

[Wat76]

You are thought of each and every day, we are all rooting for you and the family. Glad to hear that all is still okay.  Please remember that we are all here for you.

Debra.

[cdwbrooklyn]

Hi Johnwife,

It is good to hear that John is still here.  Congratulations on your first granddaughter!!!  If God permits John to live to see his granddaughter, I hope that will encourage him to give D another chance.   Anyhoo, I’m just not giving up on him yet and still praying for him. 

[MooseMom]

Thanks so much for posting.  We've all been following your story and can't help but feeling sympathetic.   

[amanda100wilson]

after 12 to 13 weeks, it is pretty certain that John was not truly ESRD when they started dialysis, symptomatic, yes, but he must still have clearance at some level.  I appreciate that he has been through so much, and the doctors are doesn't seem to have helped (poor management of catheter, forced dialysis etc.), it just seems such a shame that he won't have dialysis.  whilst he may perceive it as poor quality life, it doesn't sound as if if has a great quality now.  I really believe that had he continued with the dialysis and if needs be, switched doctors and dialysis units to get a better experience, that he may have been able to realise that it was better tha. going through what he is going through at the moment.  I really do understand that it is his decision but I feel sad everytime that I think that he has probably been driven to this in part by his poor experiences with and of, his medical personnel.  nonetheless, he must be one tough cookie, as I would,have caved in long ago for the short-term 'fix' of feeling better.  sure when my time comes that I will OD on a bunch of bananas (only kidding)

[jeannea]

You are very strong. I'm so sorry things are rough for John. A granddaughter is something to smile about.

[johnswife]

Actually he was most def esrd. His GFR was 5% when they started and it was 3% last check. He's just a stubborn country boy!!! It takes alot to get him down.  The doctors and hospital both didn't think he would last 2 weeks. I think he vomits so much and often that its keeping just enough fluid off to survive but not to really help in any way.

He had a real bad night last night--thrower up 9-10 times, no sleep, and pain, I don't know how he does it.

Thank you to you all and hugs to everybody;)

[Lillupie]

Actually he was most def esrd. His GFR was 5% when they started and it was 3% last check. He's just a stubborn country boy!!! It takes alot to get him down.  The doctors and hospital both didn't think he would last 2 weeks. I think he vomits so much and often that its keeping just enough fluid off to survive but not to really help in any way.

He had a real bad night last night--thrower up 9-10 times, no sleep, and pain, I don't know how he does it.

Thank you to you all and hugs to everybody;)

You should ask him is dialysis as bad as throwing up this much?? Would it be that bad for me to go somewhere else and start all over. If he is or was in that much pain, itching, throwing up, etc, ask him is it really better then kidney dialysis. I could be wrong, but I dont think its too late to slowly get him back into a dialysis.

[willowtreewren]

Just sending another batch of hugs to you and John.

 

 

Aleta

[amanda100wilson]

Lilllupie, my thoughts exactly.

[brenda seal]

I too wish he would reconsider his options as I watch my own husband's struggle . Sending you best wishes - you are very courageous .

[WishIKnew]

lillupie and amanda - I think you've missed the point.  Read early posts and please respect John and his wife.  I'm sure they've been surrounded by thousands of people with opinions in line with yours.  They are not stupid.  Do you really think that, as johnswife listens to her husband's agony she is not smart enough to consider making the suggestions or asking the questions you suggest?  Do you think John does not know that perhaps a dialysis session might improve his health temporarily?  Support, don't challenge and don't assume.  I hope I'm not out of line when I say that this board is a place for johnswife and others to come for support and hugs on their journey, not people second guessing and challenging their decisions.  We've all had people who know much less than we about our situations who try to step in and tell us what to do.  That's not what this thread is about.  And moderators, if I'm out of line, please delete me.  I want only to provide a safe place for Johnswife to share without judgement.


Johnswife - much love to you and John.  You are two of the most courageous people I know.  I send you strength and comfort.

[jeannea]

I'm sure that John seriously considered continuing or stopping dialysis. I can see why he could want to stop. I think we all have that choice. I just feel bad for his whole family. It must be difficult to go through this as the patient or the caregiver.

[Lillupie]

yeah,
 Im really sorry for what I said. Im sorry.

[YellowRose]

johnswife,
thanks for the update.
As I mentioned before I respect your strength to stand by your man though this difficult path, when I read "trying to make ends meet so John doesn't worry about me and the girls", can not help but with tears in my eyes. I have no words ... but just want to let you know, I really admire you. Will continue keep you, john and your family in my prayer.
Rose

[MaryJoe]

   johnswife,
Thinking of you guys today and wanted to let you know.  I keep hoping that this part of John's journey could be pain free and peaceful.  Please take care of yourself and know we are thinking of you often.   

[willowtreewren]

Sending more hugs your way....

 

Thinking of you.

Aleta