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Author Topic: I cant believe what ive just read !  (Read 11099 times)
kimcanada
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« Reply #50 on: July 22, 2009, 05:13:51 AM »

I think I wrote this before, but \i will again.... I had a fellow that was beside me in dialysis, he was the meanest of mean, he was only 35.  Very bad diabetic, and didn't watch his diet and all that jazz.

He was from a town that didn't take central lines, so he had to come to my clinic.  He always had the craps (while on dialysis , in the poo chair) and he even vomited allot.  Well he finally got a working fistula and was transfered to his own town.

I asked about his a few months ago and was told that he took himself off dialysis and had since died.

I was devastated and very angry, to me it was a simply case of him being very sick, but also very depressed.  So on some level I understand being angry at those that give up, but I think its because we see ourselves in that person, and it scares the shit out of us??
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rose1999
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« Reply #51 on: July 22, 2009, 07:51:13 AM »

I've been reading this thread but not commented so far, now I feel I need to.  My interpertation is that one of the things this poor woman feels is that she is a burden (I think this is possibly one of the things KS was angry/upset about) and I want to say to you all that not one of you is a burden, everyone is valued and valuable.  My Dad's health causes all sorts of problems and places huge constraints on what we can do but he is not a burden, he can not help his illnesses - be they physical or mental - and I love him with or without them.  Sometimes he will say "oh I am a nuisance" and we always tell him he is not - because it's true, his illness is a nuisance and a burden and he has to bear that burden more than anyone.  Sorry, just needed to get that said  :twocents; thanks for listening.
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RichardMEL
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« Reply #52 on: July 22, 2009, 08:18:26 AM »

To me these situations are VERY sad but there's one important thing here for me - and that is that these people have made a decision about their lives. For them the quality of life was obviously not worth it to them to continue with dialysis. Now who am I to dispute that or get angry with them about that? I am not them. I have not lived their life and do not feel how they feel. I am one that believes that we each should be able to make the ultimate decision for our own lives (assuming we are mentally sound and making rational decisions). I can certainly understand someone with already serious medical issues, facing Dialysis for the rest of their lives with seemingly no hope of relief to feel that their quality of life would not be worth continuing with. A couple of years ago a woman was in my unit also decided it was not for her and she passed away. Seeing the condition of her life (she was much older, too) I could also understand her decision.

I suppose I am this way because I saw my own mother make the same decision when she faced a catch-22 of medical treatments to prolong her life that killed her at the same time. She decided to go with dignity than be a vegetable on a machine just for the sake of "living" - it was difficult but I totally respected and understood her desires.

Personally I would probably do the same thing if it came to that.

Everyone is different though and it is good that most of us live in societies that allow us to make these types of decisions for ourselves (yes I support euthinasia)
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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!
cherpep
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« Reply #53 on: July 22, 2009, 12:11:44 PM »

My Dad's health causes all sorts of problems and places huge constraints on what we can do but he is not a burden, he can not help his illnesses - be they physical or mental - and I love him with or without them.  Sometimes he will say "oh I am a nuisance" and we always tell him he is not - because it's true, his illness is a nuisance and a burden and he has to bear that burden more than anyone.  Sorry, just needed to get that said  :twocents; thanks for listening.

Rose - you literally brought tears to my eyes, your words touched me.  Many days I feel the same way as your dad, and I feel so guilty about burdening my family.  Your perspective truly helps.  I'll remember those words.   

(People are looking at me now - I'm at work, sitting here with tears streaming down my face)
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rose1999
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« Reply #54 on: July 22, 2009, 12:45:12 PM »

Cheryl I thought long and hard before jumping in, I am glad my thoughts helped, they are genuinely the way I feel (I hope your colleagues understood the tears!).
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #55 on: July 22, 2009, 05:05:13 PM »

But actually I agree with Kickstart on this one.  I don't think she's commenting so much on the decision that the woman made - more that she's annoyed at the tone of the article.  I too don't think dialysis is the end of all things in my life.  I cope really well, live a full and happy life - it's not all bad for all people. I don't in the slightest feel like a burden.  My family and I are in this together.  I see myself as really lucky actually.  I have to go a bit slower, and yes, it's a pain in the bottom sometimes!  But an article like that could really scare people.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
del
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del and willowtreewren meet

« Reply #56 on: July 22, 2009, 05:40:18 PM »

I agree with you hanify.  Dialysis has not slowed hubby down much.  He does the same things that he always did.  I am in this totally with him - we work as partners!!!  Dialysis is different for a lot of people. In the 12 years hubby has been on dialysis I have seen many people who have not had any quality of life on dialysis and I have also seen many other people who are basically the same as hubby who is coping really well with it. A few people at the in center where hubby used to go just gave up doing dialysis and died.  It was sad to see but it was their life and their decision and I think we have to remember that and respect them for their decision. Of course there are times when he gets depressed but I think that can be part of any chronic disease. 
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Don't take your organs to heaven.  Heaven knows we need them here.
RichardMEL
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« Reply #57 on: July 22, 2009, 06:13:12 PM »

OK good point Hanify... I don't see myself as a burden on anyone except myself... and possibly my cat who has to put up with me when I come home tired and ignore her food bowl when I need a nap (yes, I am bad daddy!).... As far as Dialysis and Kidney Failure go I don't push it on my family or anyone else... I mean the only time it's an issue is if I'm eating with them and I may have to remind a bit about the fluid restrictions, but if we go out I manage my diet/fluid thing myself, and we're eating in I eat appropriately and if they make something with eg lots of cheese, then I just make sure the rest of my day is low in P foods so it evens out... I try not to dictate my requirements on them. Of course my family is also very supportive and understanding of what I need, and if I'm not up to catching up sometimes or whatever and that's good. I see Dialysis as something I do as part of my life and shouldn't really be an issue for others to worry about - I mean they can't really do anything much to help can they? The only thing I want is a general appreciation of the issues involved with it (I mean like being tired and other restrictions).

It's a form of treatment, it's not in any way the end of my life.. but then again I am relatively healthy (apart from the ESRD of course), youngish and able to work and do most things reasonably normally. I understand that obviously other folks are not so fortunate(which is what lead to my earlier musings).
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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!
Lucinda
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Life is great!

« Reply #58 on: July 26, 2009, 08:48:03 PM »

As you guys may remember, when I was 47 - I was ready not to even start dialysis.  Maybe she will change her mind as I did.  It is hard to judge because you don't really know what has gone on in her life prior to her dialysis.  My take was that I had known about my kidney disease for over 20 years and I had fitted two lives into 47 years and I was very close friends with someone who had a transplant and was not going to go on dialysis when that kidney failed.  I suppose I was a bit influenced by him as well. It was a very rational decision for him.  He was the richest man in Australia and had every access for assistance you could possibly want but being on dialysis was not the way he wanted to live his life.  Hard for me to understand, hard for others to understand, but his CHOICE - and he did exactly as he said he would do.

My take on dialysis now is that it makes me so much more appreciate LIFE.  The restrictions of dialysis make every minute I am away from it really precious.  Sure, we all have our bad days and our good days but the challenge in my life now it to have more good than bad by researching and studying how to keep my body and mind in the best shape.

I have never been diagnosed with depression but not every day is a sunny day - not for anybody but I totally understand those who have depression and the daunting feeling about not knowing when you will have another bout.  I have menieres disease and to me that is far more debilitating than renal failure as you never know when you will have your next attack and how long it will last.  Depression I would believe would be far more debilitating than being on dialysis while also being a contributing factor.  Dialysis to a degree you can control far better than depression and there should be a very great degree of understanding for anyone who is clinically depressed.  They can no more control what is chemically imbalanced in their brain than I can control the vomiting and vertigo in my ears when I am having a menieres attack.  Go a little less hard on those who are struck down by depression.

Also, a point to remember is that you don't have to be depressed to consider not starting or continuing with dialysis.  It is a choice and your choice.

I know I haven't been around for a while with issues of my own - broken bones etc - but it made me a bit sad reading this post.  Differing opinions are OK but not a lot of support to be found here.   :grouphug;
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