Would you change it?

[Falkenbach]

as I am happy for you. 

Well thank you, that is appreciated. And believe me, I do know I'm very lucky I am. I have just last month watched a close friend suffering from Wegeners Granulomatosis die after contracting pneumonia, and I've always known i never wanted to be in her shoes, just as one example of many.

All of us can be compared to someone who is worse off, but I'd rather try to respect and understand what everyone feels about their own lot, as long as they are doing the best they can. And I think everyone here is doing just that.

[goofynina]

Just breaking in to say "I Love You All"  and i hope you all are having a nice day   

This forum can bring emotions out that we have learned to suppress, it's OK to bring those emotions out and say whats on your mind and obviously not everyone will agree, however telling someone that their question is foolish is uncalled for. If you think the question is foolish, then why post to this thread?

IHD values all members and encourage every member to be active, and some subjects I don't completely agree with either, but then I just read them and move on to the next thread that I feel I can have some input in. Every member has the right to voice, but lets not start telling people that their feelings are foolish.

Sluff/ Admin

Sluff, i couldn't have said it better myself amigo 

[LightLizard]

Very True Sluff. The question is not foolish at all! It is 'academic' for most of us, but it is a valid point to consider and can be quite revealing when we ask ourselves that question.
Everyone would choose health over illness, that's a given, but when one is confronted with their mortality, they either fold up or they open up.
The way we are raised and the way our culture influences our state of mind often leads people into a valley of denial about many aspects of their lives.
When one is confronted with certain, undeniable realities, it can force us to take stock and really find what it is that makes our life worthwhile, gives it meaning.
Most people will pay lip service to living with meaning and purpose, but those who walk the edge,
there is no need to speak of that which is.
Each day is a blessing, and death gives life more meaning than anything else we can imagine.

love

~LL~

[George Jung]

LL, by "academic", do you mean elementary, as in a no-brainer?

[LightLizard]

no, I mean that it's a question that is more educational than anything else.

it tells a lot about a person when they have to face their mortality and how they face it.

acceptance is necessary, but gratitude makes everything a blessing.
 

[lola]

CB i have at times thought twice about posting because I'm afraid of feeling attacked but then i realize where else can i go and meet such amazing people, don't feel bad i to don't know what dialysis is like it's my hubby who is the pt but i sometimes have so many ?'s and most people here never make me feel foolish about my post.

[stauffenberg]

A transplant from a live donor should last around 20 years, so depending on CB's age, CB may die of natural causes before ever having to face dialysis.  But it is worth keeping in mind that living with a kidney transplant is not perfect health either, since the immunosuppressive drugs are extremely toxic and produce their own complications.  Also, while the life expectancy for transplant recipients is two to three times longer than that of dialysis patients, it is still much shorter than that for people who have never had renal problems.  From my own experience, I would say that on dialysis my ability to function, my sense of well being, my energy, and my enjoyment of life, on a ten point scale, was about 2, but with a transplant, it is about 8.

[st789]

Yes, life on dialysis is suck big time.  I agree with Stauffenberg's scale of dialysis and transplant patients.  I take the side effects of the transplant anyday over dialysis.

[pierrat]

You are only only taking the first steps to a very long marathon. Just because you are stating an opinion and we're all a happy family doesnt mean the question isnt foolish. I mean who would think a group of chronically ill people would "not" change there situation?

This forum can bring emotions out that we have learned to suppress, it's OK to bring those emotions out and say whats on your mind and obviously not everyone will agree, however telling someone that their question is foolish is uncalled for. If you think the question is foolish, then why post to this thread?

IHD values all members and encourage every member to be active, and some subjects I don't completely agree with either, but then I just read them and move on to the next thread that I feel I can have some input in.  Every member has the right to voice, but lets not start telling people that their feelings are foolish.

Sluff/ Admin

I posted because sometimes, things have to be discussed no matter how wrong they are. I mainly responded because frankly the poster who is only at the beginning and hasent experienced dialysis and what it entails, seems to have no problem downplaying our disease, as if its something we would Choose to have because, well I have no idea, because it makes us more wonderfully happy people?

Main Entry: fool·ish
Pronunciation: 'fü-lish
Function: adjective
1 : lacking in sense, judgment, or discretion
2 a : ABSURD, RIDICULOUS

Who here would even bother to think for a second that MOST people who have Cancer or Diabetes, or Heart Disease, or KD, Polio, Cerebral Palsy, Muscular Dystrophy, or any major serious disease wouldnt change it?? Where are all the hands being raised?

So asking a group of people with a chronic illness if they would change it sure sounds to me like its "lacking in sense, judgment, or discretion" I'm just pointing out the obvious but I guess that doesnt play well here. Everyone has to be right and everyones a winner.

[pierrat]

The question was not ignorant at all. I think it was valid because it was how you feel about the situation. If someone is offended then get over it.... she has a right to feel however she wants..as does everyone else...  but if your going to talk about ignorant comments i think what you wrote pierrat was more negative then CB post... NOT ALL transplant fail.... thats a fact.. i couldn't think of  a more ignorant statement......... I thought i should comment on what you wrote because numerous people might be discouraged to get a transplant after seeing that.... and its simply not true...

CB you have so much to look forward to with your upcoming transplant.. your feelins and emotions on this topic are justified.

Amanda
xxoo

"NOT ALL transplant fail" First off, I never said all kidneys fail, so before you start talking about ignorance get your facts straight first.

I was talking to cyco specifically about her case.

Cyco said she was in her what, early 20's, the average lifespan for a female in australia is 83.3 years old. That would mean that the kidney would have to last almost 60 years. Going by current numbers that would put her at a record of the longest kidney transplant patient or at the very least a very very short list.

So your absolutely correct in that her transplant may not fail, as long as you assume, that everything is perfect, and she's also on the short list of a few people that are medical miracles. But unlike those people the other 99.9% of people will not have a kidney lasting 60 years, even with a living donor the average is 35 years with 50% failure within the first 25 years. Cadaver kidneys are 50% failure after 10-15 years.

[George Jung]

So asking a group of people with a chronic illness if they would change it sure sounds to me like its "lacking in sense, judgment, or discretion" I'm just pointing out the obvious but I guess that doesn't play well here. Everyone has to be right and everyones a winner.

I have felt the same way before.  Your posts are spot on in my opinion, pierrat.  "Would you change it?"  For real....come on!  I have been waiting for this topic to blow up, as it was only a matter of time.  I do not however mean any response as a personal attack on any of the posters but rather the question itself and some of the content.  One must expect to deal with different perspectives with the question at hand and know that not everyone is going to be la de da de da about it.  Just because offensive has been taken by another member does not mean there is an attack on any individual.  There are lots of emotions swarming around this site and they all hold water and validity.

[paris]

I will take any time I can get! I just want to keep going on. I would love to be the person I was, but I must say that I have a better grip on life  and what is important since my diagnosis. I was too busy rushing to the next thing -- now I can't rush, and I am learning to appreciate everything about life.  Pollyanna -ish?? I have to have a positive attitude or I would never get out of bed.  Nothing we ask is foolish--this is our safe place to share and learn.

[Falkenbach]

Edit, as I accidentally double-posted and mixed up what I was typing.

[Falkenbach]

it is a valid point to consider and can be quite revealing when we ask ourselves that question.
Everyone would choose health over illness, that's a given, but when one is confronted with their mortality, they either fold up or they open up.

I will take any time I can get! I just want to keep going on. I would love to be the person I was, but I must say that I have a better grip on life  and what is important since my diagnosis. I was too busy rushing to the next thing -- now I can't rush, and I am learning to appreciate everything about life.  Pollyanna -ish?? I have to have a positive attitude or I would never get out of bed.  Nothing we ask is foolish--this is our safe place to share and learn.

Hi LL and Paris - This is the manner in which the question was intended, and I am sorry if some people misinterpreted it. I obviously worded it badly, so that it sounded like I was asking "would you change the fact that you feel so lousy etc?" - that's not what I was asking, indeed that WOULD be a no-brainer.

So allow me to re-word it, and people can answer this if they wish: Has your condition given you a change of perspective about life in general (positive or negative), and if so, is there anything that you would change about that renewed outlook?

Hopefully that clarifies it.

To answer some people's questions, I am in my early 30's. I would also take a transplant and it's side effects over dialysis - which is why I am doing this, and am very fortunate to be ABLE to do this.

[jbeany]

I was diagnosed at 13 with diabeties, so I guess my perspective has been skewed for so long that I'm not sure what a normal perspective would be like.  I certainly wasn't contemplating my own mortality at 12.  I got smacked in the face with it at 13, when all the books I read predicted that I would die young from complications, and even the optimistic ones used phrases like "relatively normal life".  I've spent twice as much of my life sick as I had of it healthy. 

[Amanda From OZ]

Thanks for all those facts…

Pierrat the point of my post was to state that some positive thinking never hurt anyone…  like you said You don’t know CB transplant will fail….. the first kidney transplant with the use of immnosuppresant drugs hasn’t even been longer than 60 years… so there enough info for you to obtain those “facts” on weather a kidney can last 60 years .  And yes she might be one of those people that everything goes "perfect" and I hope it does…


Anyway…. Like I stated before I would change it and have the perfect health...

[LightLizard]

Hey C/B. Your rewording of the question is more to the point, I would say, but it is a little sad that you should feel that you have to justify and clarify it, really. It should be blatantly obvious to anyone with any degree of awareness that your question is reasonable and worthy of attention.

"Has your condition given you a change of perspective about life in general (positive or negative), and if so, is there anything that you would change about that renewed outlook?"

I would answer, yes, my condition has made me look at my life and life in general with a much greater sense of immediacy and clarity and I would have to say -emphatically- that the effect has been and is,  positive. My condition also helps many around me who have realised through observation and communication with me that their greatest need is to take care of themselves, their families and friends, and to attend to what is most vital to their health and happiness in the NOW.

So, I would say that 'no'- I would not change anything about my current outlook.

thank you for the clarity.

Love

~LL~

[LightLizard]

http://www.kidneytimes.com/article.php?id=20070208004643

love

~LL~

[pierrat]

Hey C/B. Your rewording of the question is more to the point, I would say, but it is a little sad that you should feel that you have to justify and clarify it, really. It should be blatantly obvious to anyone with any degree of awareness that your question is reasonable and worthy of attention.

Love

~LL~

So everyone wants to keep getting their little digs in, fine.

"I think most people who have had a serious illness like kidney failure would probably not change it if given the opportunity"

Clearly they are stating that they believe "MOST" people would NOT change being sick. In what universe do you think that is reasonable and obvious nevermind blatantly? Well I guess if you only want to agree with someone for the sake of agreeing with them then anything is blatantly obvious to you. I'm simply responding to statements and words, written by someone, unlike some I'm not a mind reader, and thats blatantly obvious.

[pierrat]

Thanks for all those facts…

Pierrat the point of my post was to state that some positive thinking never hurt anyone…  like you said You don’t know CB transplant will fail….. the first kidney transplant with the use of immnosuppresant drugs hasn’t even been longer than 60 years… so there enough info for you to obtain those “facts” on weather a kidney can last 60 years .  And yes she might be one of those people that everything goes "perfect" and I hope it does…


Anyway…. Like I stated before I would change it and have the perfect health...

I never said positive thinking was a bad thing, in general its one of the most important things to getting and being healthy. How is stating the reasonable assumption that a kidney will not last 60 years discouraging? Whats also equally as important to good health is knowing and considering all the facts in any disease. Having a good understanding of what the risks and duration length of different kinds of donors kidneys is relevant. If people are not going to get a kidney because little ole me said that a kidney wouldnt last 60 years then they need far more help than any of us can provide.


As for your point, no your point came out as a direct insult to me, I merely called a question foolish. I never questioned the integrity or intelligence of CB because I dont know what she is like. Only that, that one question to me was foolish. She might be a very intelligent person who would blow us all away, but that doesnt mean intelligent people cannot and do not ask foolish questions. But you specifically called me ignorant "twice" so excuse me if your message of "positive thinking" was lost, perhaps im to ignorant to see all that "positive thinking" in your post. Ill read it again below and see if I can find it.

I especially like how you state "NOT ALL transplant fail" considering I never stated that, only that in CB's case her kidney will almost certainly fail within 60 years.




"the question was not ignorant at all. I think it was valid because it was how you feel about the situation. If someone is offended then get over it.... she has a right to feel however she wants..as does everyone else...  but if your going to talk about ignorant comments i think what you wrote pierrat was more negative then CB post... NOT ALL transplant fail.... thats a fact.. i couldn't think of  a more ignorant statement......... I thought i should comment on what you wrote because numerous people might be discouraged to get a transplant after seeing that.... and its simply not true..."

CB you have so much to look forward to with your upcoming transplant.. your feelins and emotions on this topic are justified.

Amanda
xxoo

[BigSky]

The question was hardly foolish.

It was just a question, plain and simple and CB expressed her viewpoint.  There is no need to piss and moan about the question calling it stupid or foolish.

Another thing, one doesn't need to have undergone years of dialysis or had the disease for years to gain an understanding of it.  Just the mere fact one has the disease causes one to take on a different view.  If her view is that she wouldn't change it so be it.  All in all does it really matter that much to some whose view is that they would change it.   Really now

[Amanda From OZ]

Thanks for all those facts…

Pierrat the point of my post was to state that some positive thinking never hurt anyone… like you said You don’t know CB transplant will fail….. the first kidney transplant with the use of immnosuppresant drugs hasn’t even been longer than 60 years… so there enough info for you to obtain those “facts” on weather a kidney can last 60 years . And yes she might be one of those people that everything goes "perfect" and I hope it does…


Anyway…. Like I stated before I would change it and have the perfect health...

I never said positive thinking was a bad thing, in general its one of the most important things to getting and being healthy. How is stating the reasonable assumption that a kidney will not last 60 years discouraging? Whats also equally as important to good health is knowing and considering all the facts in any disease. Having a good understanding of what the risks and duration length of different kinds of donors kidneys is relevant. If people are not going to get a kidney because little ole me said that a kidney wouldnt last 60 years then they need far more help than any of us can provide.


As for your point, no your point came out as a direct insult to me, I merely called a question foolish. I never questioned the integrity or intelligence of CB because I dont know what she is like. Only that, that one question to me was foolish. She might be a very intelligent person who would blow us all away, but that doesnt mean intelligent people cannot and do not ask foolish questions. But you specifically called me ignorant "twice" so excuse me if your message of "positive thinking" was lost, perhaps im to ignorant to see all that "positive thinking" in your post. Ill read it again below and see if I can find it.

I especially like how you state "NOT ALL transplant fail" considering I never stated that, only that in CB's case her kidney will almost certainly fail within 60 years.

Whatever you think.....  i apologize if i called you ignorant.. your not.... your seem like a very educated person....  i just don't like to see ppl picked on by expressing there true feelings.

ANYWAY! .......... i think we can move on...!

[pierrat]

Think I beat this horse to death and its time to move on.

[Falkenbach]

basically telling me and others that "most" of us would choose it

I didn't tell anyone anything. I asked. I asked for your input - input from all of you. I had guessed that a lot of people would agree with me, but that guess was wrong. I know that now. Because I asked.

There's also some pretty big assumptions being made here, that I don't know what its like to have been unwell and suffering for years. That's a bit presumptuous, as people here don't know all the conditions I have, or how long I have had them, or what things I have suffered as a result. People are presuming that if I still wouldn't change my outlook, it could only be because I haven't been through much - you don't know that. You have just presumed.

And it's not always the case. If you could only have met my close friend Jay, a sufferer of Wegeners Granulomatosis who had countless operations and died last month, she'd have done more than surprise you with her attitude - she'd have blown you away. Now I'm not saying that everyone should be just like my friend Jay, I'm just saying there are people out there like that, therefore I don't believe my question was foolish or even entirely ignorant. Partly ignorant, perhaps. But as Pierrat himself pointed out, we can't all be mind readers.

I'm glad I asked, because now I really do know how you all feel. Wouldn't you prefer it if people knew, if people asked, rather than making up their own minds about how it must be?

[pierrat]

basically telling me and others that "most" of us would choose it

I didn't tell anyone anything. I asked. I asked for your input - input from all of you. I had guessed that a lot of people would agree with me, but that guess was wrong. I know that now. Because I asked.

There's also some pretty big assumptions being made here, that I don't know what its like to have been unwell and suffering for years. That's a bit presumptuous, as people here don't know all the conditions I have, or how long I have had them, or what things I have suffered as a result. People are presuming that if I still wouldn't change my outlook, it could only be because I haven't been through much - you don't know that. You have just presumed.

And it's not always the case. If you could only have met my close friend Jay, a sufferer of Wegeners Granulomatosis who had countless operations and died last month, she'd have done more than surprise you with her attitude - she'd have blown you away. Now I'm not saying that everyone should be just like my friend Jay, I'm just saying there are people out there like that, therefore I don't believe my question was foolish or even entirely ignorant. Partly ignorant, perhaps. But as Pierrat himself pointed out, we can't all be mind readers.

I'm glad I asked, because now I really do know how you all feel. Wouldn't you prefer it if people knew, if people asked, rather than making up their own minds about how it must be?

Well said and 100% true, it was presumputious of me to have assumed I knew everything you went through. I did for the most part assume when you said you havent gone through dialysis that your experience in the negative effects of a long term disease was sorely lacking. It was just I know so much tragedy has been put upon people by this disease, that I just couldnt rationalize anyone choosing to have it. That was my mistake and I apologize for it.