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Author Topic: Considering stopping treatment  (Read 3302 times)
CW
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« on: October 27, 2012, 11:17:40 PM »

Hello All,

I have been posting here for a few years and I come and go but it is always a delight to drop by and read a post a little.

I am not looking for a pep talk just need to talk to some other patients I don't really have any to talk to in person.

I started 14 years ago in my early 20's was miserable for years, had a serious change of environment and started doing better, then got a transplant and got into high gear. Started working having fun and being a more active dad.

Now things are looking down I work very hard and serve folks that are nowhere near as disabled as I am (most not all) and listen to them complain about issues that seem like a walk in the park to me but they believe that the world owes them something. I am committed to being a professional so I do not let my personal situation impact my service to them ... if they didn't ask for help I wouldn't have a job doing what I do - so the irony is not lost on me. I mention this because even after busting my ass for 5 years I am still struggling and always have budget issues, frankly it is not fair and I am tired of it.

I am constantly having to fight for everything... decent, safe, legal  and fair treatment at my clinic, fair treatment at work - its a job just living and I'm tired of it.   

So I am thinking of stopping treatment because I am always tired and miserable and getting sicker by the month I cannot keep this up.
Whaddya think?
Your Kidney brother CW
Logged

*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
cariad
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« Reply #1 on: October 28, 2012, 04:47:33 AM »

I am not on dialysis so my thoughts may not be what you are looking for, but I can understand why you are so fed up with your situation and I'm sorry to hear that you're struggling so much.

However, in these scenarios, death is often aptly described as a "permanent solution to a temporary problem". Judging only by the bit of information you've given, I would say these all sound like fixable issues - the job wearing you down, clinic difficulties, and hopefully the feeling that you keep getting sicker. I believe these all have solutions, but you have to find the energy and fight to tackle them, which can be overwhelming and seem impossible. Also, I cannot help but notice you are a parent and therefore in my personal opinion your life does not belong to just you anymore, at least until you have ushered that child into adulthood (the exact age is up for interpretation) and discussed this decision with the significant people in your life.

It sounds to me like you are in desperate need of change in several areas of your life right now. For your daughter's sake, I would say you should exhaust every option you can think of before turning to an irreversible solution like stopping dialysis.

Hope this helps a little, or at least gives you food for thought.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
amanda100wilson
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« Reply #2 on: October 28, 2012, 11:18:12 AM »

I agree with Cariad.  start looking for a new job, find a new clinic and also try to find some new interests.  if you stay in the same  job, unload on some of the whiners.  it may just help them see their own situation n a different perspective. 

 :flower; :grouphug; :grouphug;
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: October 28, 2012, 11:41:19 AM »

Dear CW, I can only agree with the posts above. Just starting to look for those solutions will make you feel better. It will, cos it did for me. Making a start is half the work.  ;D

Your avitar is just too funny, too sarcastic, and for years I thought it the funniest avitar I had seen since I started losing controle over my body (17). I hope to see it regularly for quite a few years yet. I understand you I think, but try the 'easier' options first. The things you can, at least, try to change.
We are going to be such a loooong time dead.

Take care my darling, and lots of love, and strength Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
ChrisEtc
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« Reply #4 on: October 28, 2012, 03:03:26 PM »

Maybe it's a cliche but life is a struggle.  It was a struggle before I got sick and it's a more daunting struggle now that I'm on dialysis.  That's just life.  You have to find the small joys that make it all worth it to struggle and endure.  Best of luck. 
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lmunchkin
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"There Is No Place Like Home!"

« Reply #5 on: October 28, 2012, 04:39:29 PM »

Very well put Chris. 
Maybe it's a cliche but life is a struggle.  It was a struggle before I got sick and it's a more daunting struggle now that I'm on dialysis.  That's just life.  You have to find the small joys that make it all worth it to struggle and endure.  Best of luck. 

Children can & will make a difference, Im sure!
Also, I cannot help but notice you are a parent and therefore in my personal opinion your life does not belong to just you anymore, at least until you have ushered that child into adulthood (the exact age is up for interpretation) and discussed this decision with the significant people in your life.

It sounds to me like you are in desperate need of change in several areas of your life right now. For your daughter's sake, I would say you should exhaust every option you can think of before turning to an irreversible solution like stopping dialysis.

Hope this helps a little, or at least gives you food for thought.

Im not on Dialysis, but I know of my husbands struggle with life on D.  It is never easy!
On the other hand, if this is what you want, then I should support your choice.

God Bless,
lmunchkin :kickstart;
Logged

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
CW
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« Reply #6 on: October 28, 2012, 04:59:14 PM »

I am not on dialysis so my thoughts may not be what you are looking for, but I can understand why you are so fed up with your situation and I'm sorry to hear that you're struggling so much.

However, in these scenarios, death is often aptly described as a "permanent solution to a temporary problem". Judging only by the bit of information you've given, I would say these all sound like fixable issues - the job wearing you down, clinic difficulties, and hopefully the feeling that you keep getting sicker. I believe these all have solutions, but you have to find the energy and fight to tackle them, which can be overwhelming and seem impossible. Also, I cannot help but notice you are a parent and therefore in my personal opinion your life does not belong to just you anymore, at least until you have ushered that child into adulthood (the exact age is up for interpretation) and discussed this decision with the significant people in your life.

It sounds to me like you are in desperate need of change in several areas of your life right now. For your daughter's sake, I would say you should exhaust every option you can think of before turning to an irreversible solution like stopping dialysis.

Hope this helps a little, or at least gives you food for thought.

This is why I love this place.... I ask for opinions and ppl take their personal time and effort o respond... thank you all for your opinions...

Truth is my child is the only reason I have lasted this long I think I would've given up a long time ago... my child is an adult now... not saying she couldn't benefit from having me longer but I feel I have gotten her further than I would have ever thought I could and I have fufilled my official duty of getting her to aduldhood..

I like the perrmanent solution to a temporary problem concept... however my issues have spanned years ... it has never been perfect but I have always fought . Now I'm just tired

I can change clinics but I am fighting for the patients there who cannot or are too afraid to do so... I'm not leaving until the incompetent and dangerous staff are gone. I'm a person that doesn't back down from bullies! I refuse so I will not leave.

I have attempted to find employment but my schedule is hard to justify. I have a strong sense of pride in the fact that I maintain my own health ins. And work very hard.... I have not found any employer that can accommodate me despite the fact that I am a capable, competent and dedicated employee with high moral standards that I comprimise for no one.

Just a little more info for ya! Thx all and patient or not I know you all have valid viewpoints it makes no dif. To me :-)
Logged

*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
cdwbrooklyn
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« Reply #7 on: October 28, 2012, 05:20:45 PM »

CW, I personally understand what you are feeling.  It's okay to feel that way because everybody needs somebody.  Being on D is not easy and there are days you will have ill feelings.  When I start feeling that way, I think of the possitive things in my life.  What makes me want to stay alive? I think about the things that God blessed me with and it usually put my mind back on track.  I do feel like giving up somedays because I just don't want to do D.  There are times I fight with myself but at the end of the day, I'm happy I did D.  I feel a lot better and can continue to live my life. 

Also, I can understand people complianing about minor things that is just a walk in the park.  However, we have to understand that their insecurity as well as D is our insecurity.  Nonetheless, you are a strong person and when those negative feelings start to invade your mind, fight them with your positive feelings.  Sometimes we have to learn to change the way we think because the mind do play tricks. 

Anyhoo, vitamins can help you feel a lot better after D.  Look at some overthecounter vitamins that can help and talk to your doctor to see if it's safe.  I take overthecounter vitamins and it does wonders.  My doctor approve of it.  It helped me through D for 14 years. 

Anyhoo, hang in there.
Logged

Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
CW
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Yeah .............That's me!

« Reply #8 on: October 28, 2012, 05:52:21 PM »

CW, I personally understand what you are feeling.  It's okay to feel that way because everybody needs somebody.  Being on D is not easy and there are days you will have ill feelings.  When I start feeling that way, I think of the possitive things in my life.  What makes me want to stay alive? I think about the things that God blessed me with and it usually put my mind back on track.  I do feel like giving up somedays because I just don't want to do D.  There are times I fight with myself but at the end of the day, I'm happy I did D.  I feel a lot better and can continue to live my life. 

Also, I can understand people complianing about minor things that is just a walk in the park.  However, we have to understand that their insecurity as well as D is our insecurity.  Nonetheless, you are a strong person and when those negative feelings start to invade your mind, fight them with your positive feelings.  Sometimes we have to learn to change the way we think because the mind do play tricks. 

Anyhoo, vitamins can help you feel a lot better after D.  Look at some overthecounter vitamins that can help and talk to your doctor to see if it's safe.  I take overthecounter vitamins and it does wonders.  My doctor approve of it.  It helped me through D for 14 years. 

Anyhoo, hang in there.

Ok I gotta ask what does cdw in ur screen name stand for? I am originally from brooklyn (bedstuy before it was safe) I started treatment in 1998 at brooklyn hospital (downtown brooklyn on dekalb) I moved to cali approx 7 years ago and never looked back but haven't had a decent slice of pizza since I left! I'm starving... lol and my family says I gotta come back if I want NY food. Appreciate your response you keep ur great additude it will serve you well as you know.... take care!
Logged

*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
CW
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Yeah .............That's me!

« Reply #9 on: October 28, 2012, 05:58:01 PM »

Dear CW, I can only agree with the posts above. Just starting to look for those solutions will make you feel better. It will, cos it did for me. Making a start is half the work.  ;D

Your avitar is just too funny, too sarcastic, and for years I thought it the funniest avitar I had seen since I started losing controle over my body (17). I hope to see it regularly for quite a few years yet. I understand you I think, but try the 'easier' options first. The things you can, at least, try to change.
We are going to be such a loooong time dead.

Take care my darling, and lots of love, and strength Cas


You like my avatar..... makes me smile thx  :2thumbsup;
Logged

*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
cdwbrooklyn
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Positive Thoughts equal Positive Energy

« Reply #10 on: October 28, 2012, 06:13:32 PM »

Ok I gotta ask what does cdw in ur screen name stand for? I am originally from brooklyn (bedstuy before it was safe) I started treatment in 1998 at brooklyn hospital (downtown brooklyn on dekalb) I moved to cali approx 7 years ago and never looked back but haven't had a decent slice of pizza since I left! I'm starving... lol and my family says I gotta come back if I want NY food. Appreciate your response you keep ur great additude it will serve you well as you know.... take care

CDW is my three birth names.  See, that's what's wrong, you're home sick.  I am very much familiar with brooklyn hospital (born there) and dekalb avenue.  I live in Canarise now.  I lived in Flatbush when I started D.  No pizza like Brooklyn pizza and you know that! ;D   Anyhoo, I have to stay positive otherwise I will not beat this D.
Logged

Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
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