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KICKSTART
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« on: March 23, 2011, 04:03:43 PM »

or stopping dialysis has got me thinking. A lot of you say , as long as i go surrounded by those i love and love me then i have no fear of dying. A lot of you have religious views on dying as well. But what if you are going to die alone ? What if there is no one to bury you ? How would you feel then ? Because of recent problems that is what is ahead for me, i dont feel so brave about dying , but i do struggle to carry on , either way im doing this alone ..could you ?
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
MooseMom
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« Reply #1 on: March 23, 2011, 04:13:02 PM »

For reasons that I will not go into, I am about 99.9% certain that I will die alone.  My husband would probably be hurt by me saying this, and I don't mean to hurt anyone, but I do feel like I am doing this all alone right now.  My husband works very hard and for long hours, and when he gets home, the last thing he wants is to hear me whine or watch my sadness.  He has never been to any neph appt with me (save the very first one almost 7 years ago), never accompanied me to any test, although he did drive me to my transplant evaluation, mainly because I don't know Chicago very well.  Anyway, I know that I'll have to do the whole dialysis thing by myself,too.  But I have no family within 1000 miles, and even those people are way older than me and are not in the position to help.  My parents are dead, my only child is autistic and lives on the other side of the world, and there are other things that have isolated me that I really don't want to explain.

So that's why I'm scared of dying.  It seems like such a lonely thing to have happen.  Kickstart, I think I have some small idea of what you must be feeling. :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
willowtreewren
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« Reply #2 on: March 23, 2011, 04:32:42 PM »

Ladies,
It is just impossibe to know when, where, or how any of us will die. I feel that my mother and my grandmother are alive, because they live inside me in my memories.

So you, too, will be in the memories of all those you have touched. Those who have known you, laughed with you, cried with you, shared some of your joys and some of your sorrows.

We are each of us alone, and each of us a part of a much larger family.

 :grouphug;

I think more important than the dying is the living that happens before then.

 :cuddle;

Aleta

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Wife to Carl, who has PKD.
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Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
MooseMom
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« Reply #3 on: March 23, 2011, 04:37:56 PM »

Sure...living = pills, pain, doctors, stress, illness, fatigue, fear.

The last time I felt pure, untainted joy was Spring 1978.

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
willowtreewren
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« Reply #4 on: March 23, 2011, 04:39:30 PM »

 :'(

I'm so sorry, MM.  :cuddle;
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Wife to Carl, who has PKD.
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Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
galvo
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« Reply #5 on: March 23, 2011, 05:44:24 PM »

Kicky, I'm in the same boat. I just hope a heart attack takes me quickly. I don't give a hoot what happens to my remains.
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Galvo
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« Reply #6 on: March 23, 2011, 06:44:23 PM »

Kickstart, Iam sorry that you are all alone in your illness. The emptiness you must be feeling at this time must be overwhelming I can only imagine. My husband wanted to respond to some ones post about stopping dialysis to give his insite on the matter.  He and I have been discussing this for quite some time, me against & him for, but he just wanted to let people know that it is okay to give it up!
You are not alone in this Kickstart! You are never alone if you love Jesus! Iam not a religious person at all, Iam a believer in Christ. That he came to earth and lived as a man, died on the cross and was resurrected from the grave to be on the right hand side of his Father who is in Heaven. So we who constantly sin can ask forgiveness and be assured that when we die we can be with our Lord and Savior.  He didnt die just for me, Kickstart, he died for everyone! If you choose to die now or later, alone or not, is ultimately up to you.  Please dont take my husbands choice as a mandate for everyone else, cause he did not mean it to be taken as that. They are his wishes and his alone!  I want him to live with me forever, but those are my wishes, not his. They are what he was feeling at that moment. 
Like Moose Mom said there are alot of people going through things alone in life, but understand, for whatever reason, some may want to help in some way but due to life's circumstances, it's just not possible. So just make the best of your life! Try reaching out to others in need, it may help you to not think of your pain and suffering so much! You never know, you may meet somebody who will like the humbleness they see in you and say " hey look at him trying to help others, when he needs help himself!" Thats called 'admiration".
Kickstart, I believe you have a lot of good qualities, and I dont know you from Adam! I think all of us have some excellent ways about us that we can rub off on one another. Healthy or Sick, it doesnt matter, it is what we do with it that counts! Right? Again, I hope you dont take his post personally.
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
KICKSTART
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« Reply #7 on: March 24, 2011, 12:11:57 PM »

MM I know you more than understand  :cuddle;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
gaelicdevil
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« Reply #8 on: March 25, 2011, 09:39:59 PM »

Sure...living = pills, pain, doctors, stress, illness, fatigue, fear.

The last time I felt pure, untainted joy was Spring 1978.

I remember Spring of 1978, I was healthy as well. I  guess I am not the only one by myself thinking about better times.
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Type 1 diabetic, fistula October 2010, Hemodialysis January 2011, triple by-pass heart surgery November 2011, hoping for transplant, O negative, universal donor, still breathing.
casper2636
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« Reply #9 on: March 25, 2011, 10:59:21 PM »

PLease Google the poem "The Dash". It means so much.
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gaelicdevil
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« Reply #10 on: March 25, 2011, 11:12:05 PM »

I can't say chin up because I can't say it for me. One foot in front of the other. And then who knows.
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Type 1 diabetic, fistula October 2010, Hemodialysis January 2011, triple by-pass heart surgery November 2011, hoping for transplant, O negative, universal donor, still breathing.
Phraxis
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« Reply #11 on: March 25, 2011, 11:43:21 PM »

I believe it a lyric to a song, "we are born alone and will die alone". Part dialysis treatment was a meeting with a psychologist who asked a number of questions, in exasperation my sister demanded that he ask the real question which was "do you want to die?" The psychologist froze like a deer caught in the headlights. We both laughed at his discomfort. The reality of the question was lost on us at the time -- let us just say that the giving up gene has likely been removed from our genetic makeup.

Relevent to your question is that I just didn't consider not having a transplant, in fact that decision was made in my absence as I was too sick to contribute to the discussion. (My sister gave me a kidney a year and a half ago for which I have been very grateful) I found this site very helpful when I was on dialysis and since my transplant, and having seen many of your posts I believe to to be a natural fighter. A fighter who may be a little tired right now.

Please take heart in the support that has been extended to you, and add mine, to your struggles. I won't offer "advice" as to the decision that weighs upon you except that why would you enter any fight with your hand tied behind your back? Transplant is the best treatment available for kidney failure, and the best part is that you don't have to interact with dialysis nurses. ;-)
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MooseMom
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« Reply #12 on: March 26, 2011, 12:34:20 AM »

Phraxis is right...transplant is clinically the best treatment.  I know that it is not the best treatment for everyone, but is there something about your condition, KS, that makes you think it wouldn't be the best treatment for YOU?  I am not sure why you feel you are not as deserving as anyone else of the best treatment option.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
texasstyle
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« Reply #13 on: March 26, 2011, 09:34:24 AM »

I think it's only natrual to have some fear. "Fear of the unknown". I've thought it dying myself and I'm not afraid of dying itself. I have one main fear of it and that would be that I would not want to have the feelling of "missing" my family back here on earth.
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caregiver to husband using in-center dialysis 4 years
KICKSTART
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« Reply #14 on: March 26, 2011, 01:29:43 PM »

TS , i dont have anyone to miss !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
willowtreewren
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« Reply #15 on: March 26, 2011, 01:52:22 PM »

Quote
TS , i dont have anyone to miss !

I hope your furry family did NOT hear that!  :grouphug;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
MooseMom
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« Reply #16 on: March 26, 2011, 01:53:13 PM »

TS , i dont have anyone to miss !

You won't miss my eloquent and kick-ass posts?????? :o  I'm just gob-smacked!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MooseMom
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« Reply #17 on: March 26, 2011, 01:54:01 PM »

Quote
TS , i dont have anyone to miss !

I hope your furry family did NOT hear that!  :grouphug;

Nor your cyberfamily!! :P
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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