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Author Topic: Trying to decide if it is time to stop  (Read 3473 times)
bjp81757
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« on: December 17, 2015, 09:06:35 AM »

After 6 years of struggling to make hemo work, only to see every fistula clot off beyond repair, I switched to PD. Had my catheter repositioned because of slow drain and developed complications. Back on hemo for a couple of weeks and attempted to restart PD. Catheter apparently clogged. Between the fistulas, the cardiac procedures, and the PD procedures, 17  procedures total in just the last 24 months. How many do you get before you don't make it. When is enough, enough. I really don't feel like fighting anymore, I don't want to die but I don't want to be sick anymore. I can't have both and right now the latter sounds pretty damn good. Some choice.
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Vt Big Rig
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« Reply #1 on: December 17, 2015, 09:16:01 AM »

but have 20 year old twins who still need their father around.

This has not changed........ you said the above and they will always need you.

Keep up the fight. I did not go as long as you but for 6 months I had a procedure every three weeks. I feel your pain. Dialysis may be tough but when you think that it is what keeps me alive .... I guess I  like it.

If I had any device that promised to keep me alive I would take pretty good care of it.

Go ahead and rant. Rant all you want.. Know there are people on here that will pray and hope for you.

You are part of the family.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Rerun
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Going through life tied to a chair!

« Reply #2 on: December 17, 2015, 09:42:27 AM »

You said you don't want to die.  So, you keep up the fight.

             :flower;
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casper2636
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« Reply #3 on: December 17, 2015, 10:23:22 AM »

The same question runs through my head every single day that I go to dialysis. I think "Do I want to do this again? Do I want to see if tomorrow is a better day?" And, inevitably, I go, feet dragging, but I go. I want to see if tomorrow will be a better day, and think of ways to make it so. Just that little bit to get me through the one treatment. I can always change my mind later, and I'll always have that option. The latter is irreversible, and can't be taken back. Done deal. I like to keep my options open. Just one day at a time. Rant here!
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Michael Murphy
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« Reply #4 on: December 17, 2015, 10:32:02 AM »

Why go on, all you will miss is seeing your children start on adulthood, possibly grand children, holidays with the grand children, supporting your children through the startup years,.  Will they miss you sure I am sure they will tell the future grand kids what a great guy you were.  I know this crap ain't easy,  it's not a walk in the park,  it's demanding and frustrating and down right miserable at times.  Keep your eyes on the prize,you get to live,enjoy time with family and help them through life.  Bitch, complain, find a way to relive the stress.  But realize that there are people who love you and need you and would be devasted if you were to check out early.  Bear with it it sucks but it should be eventually put right. As you work through this keep your mine on the prize eventually hyoid will meet your grandkids
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kickingandscreaming
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« Reply #5 on: December 17, 2015, 11:31:16 AM »

It's a totally individual decision and each of us has to make it--over and over. I'm pretty new to all this, but there have been days at hemo that I really thought I couldn't do this again.  It can be that mind- and soul-deadening.  I too have had some unexpected obstacles.  I was planning for PD and my catheter didn't work, so I had to get a permacath and do in-center Hemo--DEFINITELY NOT my plan.  Just today I had surgery to "tweak" my PD catheter and it remains to be seen if PD Catheter 2.0 works or not.  If it doesn't, then I don't know what I will do.  And I know in my heart that there is a limit--somewhere-- to the number or nature of "procedures" that I will tolerate before deciding that the universe doesn't want me to do all this medical-industrial complex stuff.  I'm not at that place right now, but I can see it potentially out there.  I'm sorry you have had such a difficult time.  I hope you can find enough reasons in your life to stick around.  My dog is my reason.  I don't have a mate or family other than her, but she is a compelling reason, at least for now.  She's old, so when she goes, all bets are off and I will have to make the same decision you are struggling with.  I wish you the wisdom to decide.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
bjp81757
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« Reply #6 on: December 17, 2015, 01:08:32 PM »

Sometimes all that is needed is a reminder of what matters. Knowing that you folks face the same battles as I do gives me incentives to continue. I can't thank you enough for the encouragement and the kick in the butt. It is so easy to become isolated from everything and feel that you are in this by yourself. But I'm not, there is my children, there are my close friends that have seen how difficult this has been, and now I have the people in this group who understand how I feel. I will continue, if for nothing else but to repay you folks for caring about someone you don't even know.
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Michael Murphy
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« Reply #7 on: December 17, 2015, 06:23:32 PM »

Basically the decision I reached when I began to wonder why, was this sucks, but it sucks less than any alternative that I could see.   So I trudged on. And now I worry one week at a time my goal now is to complete this weeks sessions.  Next week is next weeks problem, and every Friday I feel like I accomplished my goal, it's a happy feeling cause I don't have to go any more this week.  Worry about the future for every thing but dialysis.  My advise is one week at a time. And enjoy what you can.  I also figured out that all told dialysis took up 18 hours a week of my time but I have 150 other hours to have a life.  I hope the procedure gauntlet stops for you and you find peace.
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Deanne
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« Reply #8 on: December 18, 2015, 08:01:40 AM »

The tone of your messages say you're tired of the problems, not that you're ready to die. I think if/when it's really time to stop, you won't have to put that much thought into it - you'll probably just know. I hope you see the end of the constant problems soon!
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Charlie B53
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« Reply #9 on: December 18, 2015, 08:27:25 AM »


Granted you are having a difficult time currently.  And severe depression is not totally unexpected during these tough times.

The really difficult thing is to change your focus from the current difficulties to those moments to cherish.  Instead of wasting your time thinking about the current problems, try to spend more time thinking about those thing, people, around you that give value to your existence.  Once you come to the realization that there is so much MORE reason for existence, the difficulties seem to fall away.  They won't be gone, they will still need time and attention before they are overcome.  But rest assured that they WILL be overcome.  And then you will find how very important your life is to those family, friends, neighbors are to you.

Many times it isn't the physical strength that get us through these troubles.  It is often our inner spiritual strength that supports us, and helps us live on.

I don't mean to Preach.  I don't go to Church.  But that does not mean that I do not believe.  That Belief is far stronger than my weak human body.  I Believe that this life is merely another test.  One that I expect to pass.  I do not expect any fame, or fortune, or glory.  Mere salvation will be enough when it becomes time.

Everyone has some periods of depression when faced with another obstacle.  It takes some effort to look past that and see, look at what the future may bring.

This too shall pass.

Take Care,

Charlie B
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kristina
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« Reply #10 on: December 18, 2015, 10:18:43 AM »


Everyone has some periods of depression when faced with another obstacle.  It takes some effort to look past that and see, look at what the future may bring.

This too shall pass.

Take Care,

Charlie B

Hello bjp81757.
If I may, I would like to emphasize these wonderful  sentiments of Charlie, I could not have put any better way ...
... This sort of "dialysis-hangover" touches us all sometime and it helps a lot to stop at IHD
and see another perspective from a different angle ...
With all my best wishes from Kristina. :grouphug;

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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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