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Author Topic: Im a caretaker and wife... I think this has been the hardest job ever  (Read 1834 times)
till out last breath
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« on: January 31, 2011, 02:00:45 PM »

My husband is 51 years old with many health problems..  On Dec. 28,2011 he got into Little bit of a different at treatment and that was the last day he went.  He is still alive   33 days with no treatment.  I have been dealing with this pretty much by myself..  The center were he was going for treatment upset him so much  HE DONT EVEN WANT TO GO TO THE DOCTORS...We both know what the outcome will be.  EVERYHTING I HAVE BEEN TOLD OR READ  said  18 days to  25 days.  WELL PEOPLE HE IS ON HIS 33 day.  AND SAYS HE FEELS BETTER THEN WHEN HE WAS ON TREATMENT.  He was in and out of the hospital for throwing up ALL THE TIME... Now he isn't feeling sick at all..  I AM GREATEFUL..There are days when I just want to give up but then I look at him and know that my issues are no where as important as his. He is legally blind so he needs my help. I have compared everyday to see a change in him and yet  not much...  I am not rushing the time we have to gather. I enjoy his love, his  life.  I just wanted to share that there is NO ONE WHO CAN PUT A DATE ON ANYTHING.. NO TIME LINE...
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boswife
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us and fam easter 2013

« Reply #1 on: January 31, 2011, 03:39:08 PM »

i too think it's the hardest job ever......on our everloven hearts at least.  Im sorry for what your dealing with.  I have thought in these days of training i/we went through that i was near a heart attack myself and that if i died, hubby would quit D so as to 'be done with it' and 'go' with me, and then he would actually be fine without it and i would have had a heart attack trying to save him, and it was for not.  Anyway, who knows, mabie some other part of your hubby is kicking in he will survive the kidney part.  Does he have some kidney function left??  Well, I wish for the best for you both.  Bless you for carring..
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
RichardMEL
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« Reply #2 on: January 31, 2011, 06:28:38 PM »

No you can't put a date on it. It's different for everyone. I am glad he is doing so well without dialysis, but as you say you both know what will happen, and it may well be the decline comes very suddenly (I hope not). As for constantly throwing up and so on while on treatment - this suggests his treatments were not being managed correctly - either by the dialyis unit or his neph, or a combination - which is poor in my view.

Certainly a very difficult decision to have made, and for you to live with. All I can say is to support him and enjoy what time you have and make the most of it. My best wishes to you both.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Jean
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« Reply #3 on: February 01, 2011, 12:38:55 AM »

I am amazed at his decision, and amazed at his ( so far) staying power. God bless you both.
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One day at a time, thats all I can do.
paul.karen
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« Reply #4 on: February 01, 2011, 06:07:56 AM »

There are other centers he could go to.  And as Richard said maybe his thearapy was lacking if he was feeling so poorly.  This is hwy it is important to be involved in ones own treatment and not just go along for the ride so to say.

I am sad for you.

If not for Karen i may not be doing dialysis myself.  But ill be damed if i will leave her alone in this world if i can hold on and have time with her.  Karen alone gives me the strength i need to carry on and be with her. 

Has he thought of PD.  It is much easier on the body no needles and generaly people dont get sick or have that washed out feeling.  And you do it while your asleep.  Just a thought.
Bless you both..
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
looneytunes
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Wishin' I was Fishin'

« Reply #5 on: February 01, 2011, 08:28:43 AM »

Agreed, there are no magic dates for any of us.  I truly hope that things continue to go well for both of you and that you enjoy each day together.  After all, that's all any of us can hope for, with our without treatment.  Bless you for being there by his side. 
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"The key to being patient is having something to do in the meantime" AU
our last breath
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« Reply #6 on: February 01, 2011, 09:27:15 AM »

I would like to say THANK YOU for taking the time out to read my story.  YES we have had other doctors look at him and one even said ''DONT UNDERSTAND WHY HE KEEPS GETTING SICK..  RAN ALL KINDS OF TEST AND CANT FIND ANYTHING... I GUESS WE WILL HAVE TO WAIT TILL HE   BREAKS DOWN THEN WE CAN GO FROM THERE''.  WHAT???? His treatment center had some very nice tech working there..  The problem for us was the social worker (which I feel she needs more education herself) did not try to help with our problem but add gas to the flames.. The office mgr and the social worker are the ones who got up in my husbands face and treated us as we were school kids being sent to the office.  She would ask a question and when my husband would go to answer it she would stop him and tell him he was wrong.  I tried to  explain and she treated my like I was no one.  When my husband said " look you ask let me try to explain"  she said  "hey you aren't happy here maybe you should just go". About 3 months ago  we did ask for a transfer to another location but was waiting for a opening . (same  center name).  My husband was so upset we got up and LEFT. He doesn't want me to call the center or doctors  he is upset and hurt.  I promised him I would not make a complant. FOR NOW.... I have plans on contacting the head of the center and make a statement as soon as.....Anyways my point is  working with your doctors and center tech. are very important but having to be belittled is unforgivable.. Now he is so upset and we feel we were let down by the ones we trusted..  I hope no one will have to go threw this.. For yes my husband has been sick and  was in and out of the hospital alto over the last 15 months, yes he is blind and need to be helped BUT NO ONE should treat him or others like a the way he was treated....It only pushed him into st oppping treatment. Which we all know doesn't take much pushing.  He went every treatment sick or not.. followed the diet and all the rules. Was sick all the time and in and out of the hospital about every 3 to 5 weeks..  He is tried of being sick...Well thanks for letting me vent... my words and thoughts are all over the place and I do hope you can understand them... Yes I am upset but I know how he truly feels and I have to respected him....WE ARE ONE...ALWAYS TOGATHER
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Rerun
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Going through life tied to a chair!

« Reply #7 on: February 02, 2011, 01:18:50 PM »

My Dear Our Last Breath.  I'm so glad you found us.  You are being such a trouper.  Hang in there.   :cuddle;

Keep us posted.

Rerun, Moderator     :welcomesign;    :pray;
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