I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Falkenbach on May 21, 2007, 11:56:50 PM
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I've been thinking about this lately - I think most people who have had a serious illness like kidney failure would probably not change it if given the opportunity. Perhaps I'm grossly wrong. But I think about the whole new perspective I've got from going through this, and I feel it's been very valuable learning, that otherwise might have taken me many decades more to reach under normal circumstances.
Perhaps that's all easy for me to say 'cause I haven't had to go through dialysis yet, or any of that, and I'm getting a pre-emptive transplant from a live donor.
What is your take on this, everybody? Would you change it if you could?
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I absolutely would change it. Granted, I have learned more about myself through this process. However, I feel I was already on the road to coming to the conclusions I have come to. It kills me to watch my family join me on this roller coaster that is the life of a kidney failure patient. If it was just me that was effected, maybe I'd be more ok with it. However, watching the anticipation of ever lab report and every phone call, then hearing the fear and seeing the sadness; almost makes me feel worse than kidney failure itself. I dunno, that's just my thoughts and how I feel about it.
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You have some very valid points, Roxy.
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Oh yes i WOULD change it . I wouldnt wish this on my worst enemy. Living this sort of half life. No outward signs to show how ill you really are, no real understanding from friends (except on here of course) I think the worst thing i find is ..you look ok , so it cant be that bad can it ?
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I'd change it in a heart beat.
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I concur with the others before me.
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I think the worst thing i find is ..you look ok , so it cant be that bad can it ?
Oh god, do I know exactly what you mean. I cut loose one group of friends over this, one of them in particular went a little too far with it and when I got angry with her, the others treated me like the bad guy. I decided to hell with this group of girls, I don't need them.
It was very disappointing because they were all 5-8 years older than me and I expected them to be more mature. But I did myself a huge favour ridding myself of them.
:rant;
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I'd change it in a heart beat.
Exactly my feelings. I have an inherited kidney disease, PKD. My father died due to complications of dialysis and the disease at 42 years. I have been surrounded by this my whole life.
Yes, I would change it in a heart beat.
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My hypothesis was obviously very wrong.
I think everyone's opinion is valid, btw.
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oh god i agree with everyone else!!! i would not wish this on my worst enemy!! This disease will haunt me and my family for life! i would change this situation in a SECOND!!!
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My hypothesis was obviously very wrong.
I think everyone's opinion is valid, btw.
Cycobully, It may not be wrong in your situation. We all have a different story to tell. In a few years your opinion may also change or it may not.
I am hoping your transplant is a great success and dialysis never becomes a reality for you.
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of course i would change everything , especially now that I'm dialysis, looking at the machine evertime I'm hooked up i think of my kids , we have pkd and how i wish that they never have to go through what i have just started,and as other have said you wouldn't wish it on your worst enemy.
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Feelings change like the wind with our emotions. No one wants to have kidney failure but I think what you mean is that there are days for a pre dialysis patient when you feel like this is a joke and not really happening to you. Like for me there are days when I feel sick and days when I don't. On the days when I do feel like crap, I read the posts here and start to feel like my situation isn't so bad because of where I'm at and get mad at myself for feeling so lousy and I'm not even on dialysis yet. Then there are days when I feel good and start to think maybe the Doctors are wrong and then I think maybe I'm just acting like a hypochondriac and should put it out of my head. But then I wake up when I feel like poo and realize it could be true again. Quite the roller coaster ride.
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I would change it in a second.
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If only I could return to yesteryear
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Ummm.....defiantly would change it. In an instant!
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In a heartbeat!!! My hubby always had such a more positive outlook and just said it's really not a big deal things could be worse, but when we found out our youngest was following the same path as him the look on his face broke my heart.
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change it!!
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in a previous post (somewhere in a different thread) i commented on kidney failure as a terminal disease. just about everyone jumped down my throat. no problem, everyone has their own point of view. what i meant was that for kidney disease there is no cure. even a transplant is only a treatment. and no matter how long it takes this disease nor complications of it will eventually kill me. if i choose not to do dialysis, it will kill me in a reasonably short time. yes if i had a choice, i wouldn't have this. this thing called end stage renal disease. who in their right mind would. however if god had given me a choice...i'd take this over cancer or aids or just about anything else. no i don't look sick, and people don't understand, but there is no point in pissing and moaning about what can't be changed. life is what you make of it, and as long as i don't dwell on my limitations, it isn't all that bad.
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in a previous post (somewhere in a different thread) i commented on kidney failure as a terminal disease. just about everyone jumped down my throat. no problem, everyone has their own point of view. what i meant was that for kidney disease there is no cure. even a transplant is only a treatment. and no matter how long it takes this disease nor complications of it will eventually kill me. if i choose not to do dialysis, it will kill me in a reasonably short time. yes if i had a choice, i wouldn't have this. this thing called end stage renal disease. who in their right mind would. however if god had given me a choice...i'd take this over cancer or aids or just about anything else. no i don't look sick, and people don't understand, but there is no point in pissing and moaning about what can't be changed. life is what you make of it, and as long as i don't dwell on my limitations, it isn't all that bad.
:clap;
If I could change it but keep the mental and spiritual focus that my condition has brought to me,
I would have it changed. But, if I had to return to my previous state of 'searching for the answers'- no, I would prefer the path I am on now.
I'm 58 years old and have had a good life, so far. I would probably feel different about it if I were younger, but for the most part, I feel that there are worse conditions to live in, and I do feel blessed, in many ways, by what I have learned through facing my mortality squarely.
love
~LL~
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I'd change it if I could. While I'm at it, I'd like to be taller, skinnier and richer, too! :clap;
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I'd change it if I could. While I'm at it, I'd like to be taller, skinnier and richer, too! :clap;
I don't know about the taller and skinnier but if you got the money Honey, I got the time
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Oh, Sluff, you smooth talker! If only you lived in Utah......
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I would change this in an instant if I could!
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I've been thinking about this lately - I think most people who have had a serious illness like kidney failure would probably not change it if given the opportunity. Perhaps I'm grossly wrong. But I think about the whole new perspective I've got from going through this, and I feel it's been very valuable learning, that otherwise might have taken me many decades more to reach under normal circumstances.
Perhaps that's all easy for me to say 'cause I haven't had to go through dialysis yet, or any of that, and I'm getting a pre-emptive transplant from a live donor.
What is your take on this, everybody? Would you change it if you could?
I know what you're saying. Last week I became Board Chair of one of the ten largest dialysis providers in the country - a $70+ million business with over 500 employees (it was suppose to happen in October but the immediate past Chair needed some PTO). My mom is very proud, I get sunshine blown up my butt all the time, none of my peer group has achieved anything like it but give me a button to press and I would agree to be a fat dumb clueless urinator in second.
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Yes, change it. I am not afraid of the mortality but more of the roller coaster physically and emotionally.
How ironic that an acquainted lectures me about facing mortality? If I remember correctly last year when she was misdiagnosed about her thyroid surgery. She was freak out about this new. She has been pretty healthy otherwise. People from the outside look at us and think we are physically and emotionally healthy. They all remind us to stay positive and we all do try to but sometimes it is hard.
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If i could change all this madness i would. For over forty years i have had to endure some of the most painful procedures and tests i wouldn't even wish on my ex wives. [well one does come to mind!] I did everything i was supposed to do. Dialysis, transplant, and dialysis all for naught. I have lost everything i have worked for because of this disease. I wish i could go back to my moment of conception and say please don't.
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I would also change my having experienced renal failure. I think Cycobully's comment comes from not having really had the experience of renal failure yet! While it is true that I have learned things and had some insights into life that I might not have had so clearly if I had not had kidney disease, 1) the lessons I learned were just intensified versions of what I could logically have anticipated about the horrors of life anyway; and 2) the horrors of endstage renal failure were a trillion times worse than the value of the intensified lessons about life I learned from it. All this cant about "think of what you would not have learned about life if you hadn't experienced this tragedy" is usually confined to people whose idea of a life tragedy is having an irritating boss at work or having their sail boat stuck in the dock for barnicle scraping during the best part of the regatta season.
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Notice the repeating theme here, its obvious anyone who's gone through or going through dialysis would change it in an instance. No offense to the poster but I find it mildly aggravating that someone would even question if they would change their situation. Seriously, anyone who has a serious life threating, crippling, degenerative disease would change it. Asking if they would seems rather redundant or foolish.
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I would change my situation in a heart beat. I would love to have my health just not be an issue for me.
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Now wait a minute here, if changing my life back to normal means no more IHD, i honestly cant say i would do it, BUT, if i can change my life back and still have all my friends i have made here at IHD, then i'd say, HELL TO THE YES BABY :yahoo;
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As others have stated, I would not wish this on anyone. Each of my children has a 50% chance of having this same dreaded disease. I am devastated by this, especially when people ask, how could you have so many children?? I feel as if I did it to them....
I remember thinking while on dialysis, that I could live with renal failure, and IF this was the only disease I inherited, then maybe I was lucky. I could have been born with the CF gene, Muscular Dystrophy gene, Trisomy, Cancer, the list is endless. At least with kidney failure, one CAN live...............
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change it in the blink of an eye,need,want,have to drink,always flamin thirsty.
but by the same token,fully appreciate the lessons this has taught me. :yahoo; :waving;
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I don't have ESRD, my husband does & I still find it hard to believe that this is forever. It has changed him so much I don't even know him anymore. This has taken his life as he knew it never to return. It hurts everyone & many people have lost everything just trying to stay alive.
Every few months he's in the hospital & always in ICU. in fact he's in the shock trauma ICU right now. On Friday he passed out in the parking lot coming out of dialysis, hit his head so hard that he suffered an subarachnoid hemorrhage. A tech called & told me he didn't feel well after dialysis, had chills & felt weak & fell outside & they let him walk out of the center like that!
I am so angry over this & helpless to do anything about it. The tech that spoke to me, not the nurse, too busy i guess, said they felt so bad because he is such a sweet person for this to happen to. What an idiotic thing to say. Don't they feel any responsibility at all.
He's so confused, can't even complete a sentence, not even sure where he is. I'm told he will be discharged tomorrow & as bad as things were they are going to be worse now.
ESRD is Hell on Earth & I feel people suffering with it are written off like nursing home patients, it's more about $ than people. Sure there are a lot of good techs, but probably more substandard. My husbands center is sub.
Why would anyone want to live with this disease if they could change it. There is not one good thing to be said for it.
I mean no disrespect to the original poster, but I think if you were on dialysis the question would have never entered your mind.
You are blessed to able to have a transplant & not have to go on dialysis so your feelings are very different. You feel the love & goodness that came from this gift, most never see that first, they see the misery of dialysis.
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Notice the repeating theme here, its obvious anyone who's gone through or going through dialysis would change it in an instance. No offense to the poster but I find it mildly aggravating that someone would even question if they would change their situation. Seriously, anyone who has a serious life threating, crippling, degenerative disease would change it. Asking if they would seems rather redundant or foolish.
It wasn't intended to aggravate anybody, it was just a thought I've been having lately. No, I haven't had to go on dialysis as I am very lucky to have a live donor - I am having my transplant in exactly a week.
However, at 46kg, and with creatinine level of 560, I think I also do qualify as someone who has a threatening, crippling disease, no? I asked the question with all sincerity, and I don't believe that makes me foolish.
Who knows - after this operation I may have a very different opinion. I have felt throughout this thread - and I have voiced it - that I think everyone's opinions and feelings are valid. But then someone comes along and tells me that mine are foolish. That makes me sad.
We are all here because we supposedly understand each other. It shouldn't be "us and them" here - there's enough of that in the real world.
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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?
I have only been on dialysis for a year, and I have learned to recognize and admire people who have gone through far worse hardships than me. Some people with dozens of surgeries, day in and day out with chronic pain, every day there fighting not just to live but the fight to keep their spirits up. People have lost husbands and wives who dont or cant deal with their partner becoming catastrophically ill. Families torn apart, people gone into bankruptcy and of course dying. Someone died in the hemo clinic just the other day 15 feet from me, he was 34 years old with 2 kids, do you think he and hundreds of thousands of others that have died so tragically young and will never see there children grow up, wouldnt change their fortune?
Yes, died, paramedics came and used the electric paddles on him. Since I've been going to my clinic in the past year I can say for a fact I know of at least 8 people that have died. Mike, Sampson, Anna, Walter, and they werent all old. I heard Epoman died, and he was also very young. I was never fortunate to have met him as he passed before I arrived. Needless to say even though I never met him, he seemed to be so full of life and energy, and his love of others show in how they remember him. I dont know how he died, but its certainly not a big jump to assume his KD had some big role in his to short life ending.
Look, im not trying to dress you down, but like many CKD patients, I feel that people in general seem to think the disease is okay, its bothersome but not to bad. That couldnt be the farthest from the truth. People who have CKD cant dwell on it, those that do have entered hospice long ago and are no longer with us. No the people that are left are the survivors, people who are choosing to not let it affect them and to still find joys in life. Those are the people who are around here and yes, they laugh and joke around, but whats the alternative? That doesnt make the disease any less so, but just shows what true courage is in the face of an incredible challenge.
So when someone says, they dont think people would change the disease if they could, to me its a foolish question. Transplants dont last forever, some never take, and others can last 20 years. I sincerely hope for the latter and you will not have to do the hard time many of us have to do, and when your transplant does fail "and it will" there will be a new treatment that will be vastly superior to anything out today.
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This is tough for me in a way because I can see multiple sides to this.
For me, I was diagnosed 13 years before I wound up starting dialysis... so I had plenty of time (and also a hell of a lot of uncertainty, specially in the last few years which lead to me not making any longer term plans or commitments because I knew there was a good chance I could be on dialysis in a month, two months.. whatever).
What this lead me to do was to try and do as much as I could while I could - by this I mean travelling, going to cultural events I was interested, seeing people I wanted etc. I am almost certain that had this NOT been hanging over my head I may have been far more relaxed preferring perhaps to save my money "because there'll be plenty of time to do that stuff" - but now I can say I've been to Russia, met some legends of Classical Music (which I like), visited friends in USA, Canada, UK, Germany etc... had some very memorable experiences over time.
I would not change THAT at all.. those things have enriched my life.
Having said that.. now that I am here and have been in dialysis land for nearly a year (well 10 months this week) I *would* change it like anyone...
I mean no offence AT ALL to Cycobully, and she herself admitted that she has not started dialysis so doesn't really know. For me as well, before I started.. it was really 80% theory... the lab results were interesting but they didn't have the immediacy they do now... for example I couldn't tell you what my Phosphate, Calcium or Potassium levels were pre-dialysis... right now I can tell you all of them because I keep them in my head.. and moreso I feel I have some understanding of the limits and what I need to do to keep them in check hopefully.
What I'm trying to say is that dialysis was a "future nasty" but because I felt pretty well physically up till I started it was a real impact on me.
Now I find my life really has become a mixture of work, home and the dreaded machine, plus the fluid restrictions, diet etc blah blah blah. I feel like I must bore everyone around me ****less with my constant "I really shouldn't have ice cream - because it's fluid AND calcium" etc.. It sure bores the heck out of me!!
So I guess for me I'd love to change the cause, but not the symptoms of my condition... because if I had just been OK and not diagnosed and put off a lot of things I wound up doing up to now then perhaps I might never have done some of those things and maybe gotten hit by a car or something thinking there'd always BE time.
Now I know to seize the day and take opportunities when they come because who knows how long you've got or even if you'll have the same chance next week/month/year.
I am not sure I really answered the question but I tried in my ramble! :)
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CB, your feelings are valid - even if most of us don't share them!
They were talking about a poll on the radio last week - they asked people to choose between a perfect body and a million dollars. Nearly everyone chose the money. My thought was the perfect body - because in my head, I was thinking "perfect, healthy body". This disease has taken my time, energy, independence and sometimes most of my self-worth. I don't need anymore lessons - I'd change all of this if I could.
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CB, your feelings are valid - even if most of us don't share them!
They were talking about a poll on the radio last week - they asked people to choose between a perfect body and a million dollars. Nearly everyone chose the money. My thought was the perfect body - because in my head, I was thinking "perfect, healthy body". This disease has taken my time, energy, independence and sometimes most of my self-worth. I don't need anymore lessons - I'd change all of this if I could.
Not only that but if I had a perfect healthy body i could make my own money.
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Yes, i would say a perfect healthy body because of all the crap i am dealing with NOW, but, will i say that if i felt fine and wasnt ill? I dunno ::)
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In my 20's 30's and early 40's I avoided Doctors big time I am paying for it know. So knowing what I know now yes I would change but 25 years back would be my start...Boxman55
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Hang in there Pierrat. We are here to support you and your husband. Sometimes, I ponder how my life would turn out if I do not have this chronic condition as such an early age. Would I be married now and have children just like my peer do? On the bright side, I survive the 4.5 gruesome yrs on dialysis. I know some here have been on dialysis longer than I am and still live a full live. Inspirational people.
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when your transplant does fail "and it will"
I'm well aware of that, I am not ill educated about this.
I might well be "at the beginning" of this marathon, as you say, but CRF hasn't been a bed of roses for me either - I've lost my business, my ability to work, my general feeling of well being AND a number of friends who don't understand the condition. I know full well there is worse to come - and I am very proud of my ability to hold my head up and to keep the attitude that I have kept - which is a positive one. I hope I can keep that up in future when things get worse.
My feelings are valid, and I am NOT foolish. All I did was ask if others had the same opinion, and if they don't that's fine. I made a hypothesis, and as I have ALREADY SAID, that hypothesis was obviously wrong - that's all it was, just a hypothesis. What made me wonder was that I have heard people such as cancer patients on tv before, saying they wouldn't change what they have been through and so forth, and to date I have felt the same way, So I wondered if others thought the same? Of course I don't WANT this condition, but the new perspective it has given me has been invaluable so far, and I wouldn't want to NOT have that perspective now.
Having suffered from severe depression since my very early teens, I never felt I had anything to look forward to and I can't even describe what that was like. Now, I am looking forward. To the day I can work again, to the day I feel healthy again. I have something to be positive about.
Okay, so my feeling about this might change with time, but that is no reason why I should be insulted for 1) feeling this way and 2) asking if others do too. So they don't, I know that now. It was only a question!
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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
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Can I just say that I was going to add to my previous post - that I was going to apologise if I had hurt your feelings, pierrat. But upon further thought, I don't really feel that's necessary as I don't feel I did anything offensive. I just feel that, instead, we both need to respect each other's opinion, and for me, be aware that there are some experiences you've had which I haven't - and vice versa.
With respect for admin and moderators, that's all I'll say on this particular discussion. Everyone, however, please feel free to get back on topic and post your thoughts on what you would or wouldn't change and why, if you wish, because I'm still interested in what everyone has to say.
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I thought the question was rather ignorant also and I think I have the right to let that be known just as the original poster has the right to think and ask what they will. It bothers me that pierrat is catching flack for his post. I see no evidence that the topic has brought out any suppressed emotions and sometimes a "foolish" question deserves a reply more than many others in my opinion. CB has not even experienced much of the scope of the situation and yet seems to think she is enlightened and wouldn't change it. Opinions are opinions but give me a break, such a question deserves to come from someone who has experienced a chronic illness and it's circumstances to the fullest but whatever. The topic is offensive to some and we deserve the right to express our thoughts and feelings about it. If that means calling the question a foolish one then so be it.
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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
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Well, I wasn't going to say any more about this, but I feel like I'm under attack, so allow me to respond, George, if you will.
I didn't say I was enlightened, just that I would not change things at the current time.
I admitted from the start that I haven't had experience with dialysis, and I've also stated several times that I might well change my mind with further experience. I realised from the start that others might not feel the same - but I can't know unless I ask.
I've also said from the start that I believe everyone's opinions are valid, and therefore I've shown respect for people's opinions and feelings - which is more than I'm getting in return. Respect needs to be given to be received.
I do realise how lucky I am to have a live donor - it doesn't invalidate my feelings, or prevent me from asking if others share them however. I don't know what else I can say, except that I think my question was taken the wrong way. I did make an incorrect assumption that a lot of people would agree with me. They didn't, and that's fine - I repeat again, as I did on the first page - that's fine!!
There's no need to insult me, you need only to say "I absolutely would change it, I don't think you understand what it's like to go through dialysis" or some such. I can respect that.
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I thought the question was rather ignorant also and I think I have the right to let that be known just as the original poster has the right to think and ASK what they will. It bothers me that pierrat is catching flack for his post. I see no evidence that the topic has brought out any suppressed emotions and sometimes a "foolish" question deserves a reply more than many others in my opinion. CB has not even experienced much of the scope of the situation and yet seems to think she is enlightened(obviously my opinion ans my words) and wouldn't change it. Opinions are opinions but give me a break, such a question deserves to come from someone who has experienced a chronic illness and it's circumstances to the fullest but whatever. The topic is offensive to SOME and WE deserve the right to express OUR THOUGHTS AND FEELINGS about it. If that means calling the question a foolish one then so be it.
To the contrary there is no attack here and I did say everyone has the right to their thoughts and expressing them, nobody is disrespecting anyone. Weather or not I think you realize how lucky you are is irrelevant as I am happy for you. I would not want anyone to experience any depth of renal failure. There was no intention of insulting you CB but I felt I needed to say what I did or I wouldn't have said it. "I absolutely would change it, I don't think you understand what it's like to go through dialysis" doesn't convey my opinion (BTW I know, not "think", you don't understand what dialysis is and I hope you never do). I hope this makes sense to you but if not...............I don't know what else to say.
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Just earlier today at dialysis I was listening to Kidney Talk and they had on this guy who's transplant is 20 years old and still going strong... really cool!
I think only people who have been ill or perhaps had family/friends with a serious condition like ours, or cancer, or whatever would say they'd want their health over the money since those who have always been healthy or not touched by serious illness would likely go for the greed.
For me.. health anyway.. money can be made and lost... your health though.. that's MUCH more difficult...
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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.
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Just breaking in to say "I Love You All" :grouphug; and i hope you all are having a nice day :2thumbsup; :yahoo;
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 :thumbup;
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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~
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LL, by "academic", do you mean elementary, as in a no-brainer?
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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.
;)
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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. :grouphug; :grouphug; :grouphug;
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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.
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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.
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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.
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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.
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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.
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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.
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Edit, as I accidentally double-posted and mixed up what I was typing.
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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.
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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.
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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...
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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~
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http://www.kidneytimes.com/article.php?id=20070208004643
love
~LL~
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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.
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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
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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 ???
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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...!
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Think I beat this horse to death and its time to move on.
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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?
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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.
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No problem, I appreciate that. I'm sorry my original wording was not ideal.
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In my previous post I said I would change it in a heartbeat. However I did not say why.
Dialysis sucks any way you look at it. It make me tired all of the time and I have medical people in my life constantly monitoring me. I can't eat what I want. I can't drink what I want. I can't travel without massive amounts of paper work changing hands. Dialysis is just plain damned annoying!
So yes, I would change having ESRD as part of my life. You bet I would change it, in an instant!
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This chronic condition is ruining me, my health, my friends, my family, my careear, my outlook on life, my views of people.......you name it and this crap is ruining it. There cannot be anything good to come out of this that I couldn't have had without it. It's not about staying positive because I do and everything falls to pieces around me, it's about REALITY, the realities of living with a chronic condition. "Ignorance is bliss." AMEN. I wish I didn't have some of the realizations that have been forced at me. I was not a materialistic person to begin with and I knew what was important in life to me so what more did I really need to know to make it through this life happily. Hell, I would give up this "learning experience" and take my old self and be an asshole and live happy as can be. Am I happy now? Has this condition brought me happiness? p*ck NO!!!
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?
Yes. It has absolutely changed my perspective. Is there anything I would change about it? Hell yes. I would give it right back, I think it sucks!!!
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i know what you're saying george. my life isn't what i would like it to be anymore, either. i doubt that anyone's is, who has to deal with our burden. but, what are the alternatives?
the best we can do is hope for an occasional 'good' day. a day when we actually have enough energy to get through the day without constantly being reminded of what we have lost.
there's too few of those to spoil them beforehand by choosing to curse and blame ....what?
there is no blame or person or cause to curse. stuff happens, and we deal with it well, or not.
again, i ask, what are the alternatives?
there's only one that i can think of and the only thing i know for sure is that i'm not ready for that, yet.
so, to make the best of a bad situation...what does one do?
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there was a time in all of our lives, i'm almost sure, that we had some level of enthusiasm about life. about our possibilities, our potentials.
but now, no matter what we do or want to do, we are still in the same position.
if we could change it, we would. but how could we change it?
we can't. it is what it is.
and we are who we are.
or are we?
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This chronic condition is ruining me, my health, my friends, my family, my careear, my outlook on life, my views of people.......you name it and this crap is ruining it. There cannot be anything good to come out of this that I couldn't have had without it. It's not about staying positive because I do and everything falls to pieces around me, it's about REALITY, the realities of living with a chronic condition. "Ignorance is bliss." AMEN. I wish I didn't have some of the realizations that have been forced at me. I was not a materialistic person to begin with and I knew what was important in life to me so what more did I really need to know to make it through this life happily. Hell, I would give up this "learning experience" and take my old self and be an asshole and live happy as can be. Am I happy now? Has this condition brought me happiness? p*ck NO!!!
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?
Yes. It has absolutely changed my perspective. Is there anything I would change about it? Hell yes. I would give it right back, I think it sucks!!!
Well all of this is quite valid, and an answer I would have found (and do find) perfectly acceptable.
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Being sick basically my entire life, what with having Spina Bifida and then being hit with ESRD , I would say yes and no to changing it. I think that I AM a much stronger person because of the adversity in my life, but on the other hand, I feel cheated out of a life of being healthy and not worrying about meds, etc.
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I would definately change it. It's a horrible thing to go through... and especially at such a young age... :thumbdown;
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I posted this thread before I'd had my transplant. Obviously the transplant was no fun, and this last week I spent in hospital with a virus was no fun either, frightened the hell out of me. Some of the problems I'm having with the medications are certainly no fun.
But at this stage, I still appreciate the outlook this whole experience has given me. I also feel cheated, being in my early 30's and frankly, right now I can't do anything more than walk, and even then not far (no exercise or anything fun for me). But boy, have I learned how to NOT sweat the little stuff, the silly and petty things that some people let their lives be controlled by! I am really glad for that.
So, I think I still stand by my original feeling. Though once again, I certainly understand why people would say otherwise.
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Would I change my condition if I could? I know I'm just starting out on this road and I'll probably have a lot of ruts and pitfalls ahead of me, but I don't think that I would change my condition.
When I was first told I had Kidney Failure, my first thought was why me, and then in about the next breath it was, "O.K. Lord, I don't know why I have this, but YOU do. I don't know what is in my future, but YOU do. I don't know what's going to happen next, but YOU do."
I still don't know for sure exactly why I have Kidney failure, but I do know that God is in control of my life and that through HIS help and my Faith, I will get through this!
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This was such an interesting topic to read. I was fortunate enough to get a transplant and be spared dialysis. I respect people on dialysis, they are so inspiring. I have learned so many valuable lessons the last few years.
I don't hold doctors in high reguards like I used to. They don't always know what they are doing. I have had some good ones and some that almost killed me.
And like others here, I don't sweat the small stuff.
My mother always says "everything happens for a reason". Now I am trying to figure out what the reason is. :)
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My husband is also a firm believer in "everything happens for a reason". I'm not so sure, but the way I figure it - whatever does happen, happens. We must find a way to handle the cards that are dealt to us. This is often easier said than done.
I, too, was very fortunate that I was able to have a transplant without needing dialysis first.
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My mother always says "everything happens for a reason". Now I am trying to figure out what the reason is.
You know we will never find out the reasons why things happen to us but in the long run, they are usually all somehow Blessings in disguise in one way or another :bow;
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It's kind of hard to not want to change things if you could when you get sick at age 12 and almost die 3 times and have no life after age 12 for many years again... and mine wasn't even from ESRD, it was Lupus at age 12. ESRD came at 16... I will never change things obviously and I have learned a great deal, and am thankful for at least learning from the process... and I can teach the things I learned to my children.... so that's a good thing.
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I totally understand where you are coming from and in no way did I mean to even remotely imply that what I had worked out for me was something that would automatically work for someone else!
If anyone took it this way, please realize that the only message i was trying to get out there was a personal one about the thought processes that are going through my mind daily.
If anyone thought I was dissing them, i wasn't and I'm begging :bow; :bow; :bow; you to forgive me. (I think this might be more effective it if was Puss-In-Boots peering over the top if his wide brimbed hat with those BIG BIG beautiful cat-eyes) :)
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Yes I would definately change it but I can't say it with as much conviction as other people on this site. Although I have PKD I am not as yet symptomatic except for restless legs. I know that sometime in the future I will be and I hope and pray it holds off as long as possible but I'm amazed at how I have been able to continue life almost as normal. I do PD on a Baxter cycler and I'm dry during the day so other than setting up the machine and dismantling the equipement next morning, changing my dressing and checking my stock, life has continued as normal.
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What this thread proves is that patients who have had a transplant without suffering through dialysis first, or who have not yet had to go on dialysis, simply cannot comprehend the horrors people go through on dialysis, since otherwise they could not even pose the question of this thread.
No doubt I learned things and in some ways matured from renal failure, but the total value of that learning and maturation was less than 1% of the loss of value I experienced in my life from the disease. It is also possible that I could have learned the same lessons in some other, totally painless way. Also worth considering is the fact that the damage to the patient's understanding of life, personality, and maturity that can come from severe illness, which may more than outweigh any gains in these areas from the disease.
Even if you assume that God exists, it is extremely difficult to determine which human tragedies could be consistent with his 'higher purposes' or not, since he has to be assumed to be an entity more weird than our wildest nightmares, given the horrors he imposes on innocent children by the tens of thousands every day. Just consider what his purposes might be in the case of infants born with Hutchinson-Gilford's Disease, which causes them to age very rapidly, so that by the time they are teenagers they have cataracts, arthritis, two hearing aids, thick glasses, complete baldness, numerous diseases characteristic of 80-year-olds, and the appearance of a tiny plucked chicken, as it has been described. On top of this, God gives them an extraordinarily rapidly developing intellect, so they can savor with exquisite torture the full horror of what they are experiencing, until they die of a heart attack, usually around age 20. Can anyone tell me what the divine purpose of this is?
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Well said stauffenberg...
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I would definitely change things--both my diabetes and kidney failure! I have struggled with severe depression for 24 years because of the diabetes and have been miserable. Now, not only am I unhappy, but uncomfortable due to the side affects of the kidney failure. And I hate seeing my husband so upset over this too. I wouldn't wish either of these 2 diseases on anyone and would start my life over in an instant if I was free of them (but only if I could meet my husband again)!
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What this thread proves is that patients who have had a transplant without suffering through dialysis first, or who have not yet had to go on dialysis, simply cannot comprehend the horrors people go through on dialysis,
This is true re dialysis, but what you are not taking into consideration is that these patients (including myself) may well have been through many other conditions and horrors during their lives which you are unaware of, so it is not fair to say they cannot pose the question.
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I grant your point: but the other experiences would have had to be extraordinarily bad! Generally, though, I think the knowledge and maturity acquired through misery is seldom worth the suffering and is often outweighed by the way the horrors of life can sometimes warp the personality and way of thinking, so that the sufferer may have been a better, more mature, more balanced and mature persono without it..
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Generally, though, I think the knowledge and maturity acquired through misery is seldom worth the suffering and is often outweighed by the way the horrors of life can sometimes warp the personality and way of thinking, so that the sufferer may have been a better, more mature, more balanced and mature persono without it..
Well, that's valid, and we all experience things differently too. It seems most people here agree with you, and therefore my hypothesis was proven incorrect, but that's okay, because a hypothesis is just that. I wasn't trying to tell anyone what they should think or feel. :)
Certainly I accept that if I was in the same boat as say, Amanda, right now, I might well feel differently. I have also read Epoman's story and think that I would most definitely feel different if I'd been in his shoes.
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Cycobully, as you may know, there are no rights or wrongs. Every person has a different set of circumstances and a different point of view, it doesn't make one person right and another one wrong, I mean we're not talking mathematics here. I don't think your hypothesis was incorrect at all, it is defiantly not how I see it , but it's not incorrect either. That is one of the great things about this site....the no-holds-bared discussions/debates, the sharing of thoughts and opinions. I just want to say I appreciate yours (thoughts and opinions) and I hope you continue to post for a long time to come.
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Thanks George. You are right, we do all have a different point of view. As long as we can share them with each other in a civil way (which I think we are doing quite well) then that's what is important, imo. I don't want anyone to feel personally insulted, and I don't want to feel personally insulted myself, so I just hope that is not the case for anyone.
:beer1;
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:beer1;
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Yes, change the experience of this p*cking disease without a doubt. How would anyone like to stay in the hospital for one month and vomiting every morning? I feel like I have never fully develop my personality since the day I got diagnose with kidney disease at the age of 16. I am more reserve and quiet when dealing with others. I feel like I live for today only and suppress a lot of emotions. Basically, I am p*cking not happy with how my life have turned out so far. Excuse my language. Sometimes, I just pray to God to get me through the difficult times.
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You don't need to "excuse" your language (at least not for me - guess I can't speak for others) because being angry is a pretty natural part of all this and you should be able to express it.
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Thanks for understanding cycobully.
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Even if you assume that God exists, it is extremely difficult to determine which human tragedies could be consistent with his 'higher purposes' or not, since he has to be assumed to be an entity more weird than our wildest nightmares, given the horrors he imposes on innocent children by the tens of thousands every day. Just consider what his purposes might be in the case of infants born with Hutchinson-Gilford's Disease, which causes them to age very rapidly, so that by the time they are teenagers they have cataracts, arthritis, two hearing aids, thick glasses, complete baldness, numerous diseases characteristic of 80-year-olds, and the appearance of a tiny plucked chicken, as it has been described. On top of this, God gives them an extraordinarily rapidly developing intellect, so they can savor with exquisite torture the full horror of what they are experiencing, until they die of a heart attack, usually around age 20. Can anyone tell me what the divine purpose of this is?
We live in an imperfect world where good and evil co-exist. There is a God, the source of all good things, who loves us too much to intentionally hurt His creation. There is also an enemy of mankind who by contrast, hates us and is the source of every unexplainable horror here on the earth. God does not teach us through bad experiences; He teaches us through His words, handed down through time. Religion has used the spectre of a punishing God to control people. If earth was free of troubles, it would be called Heaven.
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Even if you assume that God exists, it is extremely difficult to determine which human tragedies could be consistent with his 'higher purposes' or not, since he has to be assumed to be an entity more weird than our wildest nightmares, given the horrors he imposes on innocent children by the tens of thousands every day. Just consider what his purposes might be in the case of infants born with Hutchinson-Gilford's Disease, which causes them to age very rapidly, so that by the time they are teenagers they have cataracts, arthritis, two hearing aids, thick glasses, complete baldness, numerous diseases characteristic of 80-year-olds, and the appearance of a tiny plucked chicken, as it has been described. On top of this, God gives them an extraordinarily rapidly developing intellect, so they can savor with exquisite torture the full horror of what they are experiencing, until they die of a heart attack, usually around age 20. Can anyone tell me what the divine purpose of this is?
We live in an imperfect world where good and evil co-exist. There is a God, the source of all good things, who loves us too much to intentionally hurt His creation. There is also an enemy of mankind who by contrast, hates us and is the source of every unexplainable horror here on the earth. God does not teach us through bad experiences; He teaches us through His words, handed down through time. Religion has used the spectre of a punishing God to control people. If earth was free of troubles, it would be called Heaven.
You may believe in God, but how can you just say it's true and a fact when there is no proof... only faith. The Bible is not proof.. the Bible was written by man.. and stories were put in it, and stories were left out... man chose what was added and what was not... where is the proof?
I believe in God, but I do not go around saying it's fact, because not everyone believes in God and in reality, there is no proof he exists.
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I personally know a littel girl Ashley Hegi who has Progeria. Ashley is now 14 years old, has the appearance of a little old woman, heart problems, no hair (but loves her hats), loves fishing and quading one her own little guad, helps take care of her two baby brothers and has more zest for life than anybody I know. Everything is Ashley's world is far from perfect but you would not know it if you met her. I love spending time with Ashley she is so fun, everthing to her is funny, she is very talented with her crafts, and she is a good reminder for me when I feel down that my life is not really so bad. Cruel god, I don't think so and neither does Ashley, she has given so many people such joy in her short life, she touches everyone she meets. All these children born with special challenges have very special purposes. You can read Ashley's Story her on the net just by typing in her name.
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I watched a recent story on progeria on tv, it was quite heartbreaking and inspirational at the same time. What wonderful little kids they all were, even in the face of losing their best friends (other progeria sufferers from around the world) on a regular basis, and suffering their own cruel condition, they could still smile and see the good in things. Much tougher than I could ever hope to be, these kids.
It doesn't take much to make me feel sorry for myself. I spent most of last week's stay in hospital bawling my eyes out, especially when my husband got sick and had to stay home, so I had no visitors and was isolated in my room because of infection risks. I just cried the whole time and thought "why me?". Perhaps I should have given some thought to people like those kids, to help me through a bit better.
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Everyone has a right to feel down about their situation cyco... :grouphug;
I spend my time in the hospital (when i'm admitted), to sleep, since i'm a single parent, I don't get to do that much, and especially don't get to just sleep whatever time of day I am tired and want too... so I use it as a "retreat" even though it's not a spa.. at least I can be by myself for a few hours and sleep.. ;D
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Unfortunately, the hospital bed just about destroyed my back. My last 2 days or so there, my lower back was in almost non-stop spasm, so that put an end to any relaxation or proper rest! Once I got home and started sleeping on my own bed again, my back recovered almost straight away.
I can understand how you use hospital time for rest, though. I've never been a parent, but I imagine it's extremely hard work, especially when you have illness to deal with as well. I'm sure you wouldn't swap your kids for the world, though ;)
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Oh I definately understand the bed and back pain though...!! I am lucky to be on pain meds for bone pain everyday, so i get that every 4 hours in there, so it makes it more comfy for me, but yes definatly without it.. I know what u mean, and my own bed is always a comfort to get back too :)
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I would absolutely change it. I'm only 21 years old, and my life was just starting to go where I wanted it. When I was diagnosed I started dialysis immediately. I had to quit my job, and I found out I will probably never have children. (My disease is autoimmune, so kidney transplant is most likey not an option). I feel like I've lost my life, and I don't know how to get it back. When I think about being on dialysis for the rest of my life, I just want to scream. I can't do much of anything that I could do before. I don't feel like I've learned anything new in this process. Now I just feel fear for my future and what will happen to me next.
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I was diagnosed with CRF when I was about 22, but I was very lucky that I was nowhere near end-stage, at that point. It was discovered by accident. I didn't know what to expect, though, which certainly led to a lot of fear, so I can understand the fear side of things.
Illness *does* make you feel robbed, there's no denying that.
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Living with chronic illness is the uncertainty of what tomorrow will bring. One could only play the best hand of cards available and leave everything up to the one up there.
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(My disease is autoimmune, so kidney transplant is most likey not an option).
What autoimmune disease do you have? I have had 2 kidney transplants so far, and I also have an autoimmune disease, so that's why I am asking.
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(My disease is autoimmune, so kidney transplant is most likey not an option).
What autoimmune disease do you have? I have had 2 kidney transplants so far, and I also have an autoimmune disease, so that's why I am asking.
Me too! I was diagnosed with FSGS. I also had a transplant.
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(My disease is autoimmune, so kidney transplant is most likey not an option).
What autoimmune disease do you have? I have had 2 kidney transplants so far, and I also have an autoimmune disease, so that's why I am asking.
Me too! I was diagnosed with FSGS. I also had a transplant.
I don't know much about FSGS, can it go in remission? If so, did you have to wait for it to go into remission to be considered?
I am wondering if this is the case for lcamanini. Maybe they were told there disease needs to go into remission before they can go on the list or w/e...
In my case, Lupus has to be in remission in order to go on the list, otherwise... it will just attack the new organ right away and that was a pointless wasted kidney.
Thankfully I went into remission as soon as my Lupus made my native kidneys completely fail... it's as if it set out on a mission to attack and murder my kidneys, did it's job, and said good-night.. :lol;
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Well, my diagnosis is kind of complicated. Originally I was diagnosed with MPGN type II (also called dense deposit disease) which is a rare autoimmune disorder that attacks the kidneys and the eyes. Then they came back and told me that I don't have that; instead I have characteristics of three different diseases. I can't remember what the other two diseases were. So instead of being diagnosed with one disease, I'm diagnosed with partially having three, I guess is the best way to put it. My nephrologist said that my hospital, the hospital in Iowa City, and Mayo Clinic have never seen this combination of diseases before so they don't really know what to expect from a transplant. But he didn't sound too hopeful. I'm going to Mayo Clinic on Oct. 23 to have a bunch of tests done to see if I could have one though, so hopefully I'll find out some good news.
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Hopefully they tell what three diseases you have or may have... that's important, a patient should know what they have going on with them and what it's called.
Good luck.
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That sure does sound complicated. :(
I really hope the tests bring some good news.
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I had a discussion with a friend of mine tonight about me and my health. We discussed the lessons I have learned and how I could have figred out the same things without having to go through all of this crap. I talked about how it doesn't balance out.....the suffering v.s. the lesson learned. During this conversation something was realized. I was missing information, I have not been taking into account all of the effects of my situation. Everything was based on myself, the kind of person that I am, and who I have become. It was discovered that a very important part of the equation was missing. It was discussed that I should also be taking into account (in the balance of lesson v.s. suffering) the effect on the people around me. I had a realization that I had been looking at the equation from a selfish standpoint and not at the bigger picture. If I account for my friend giving up cigarettes to improve his health, people signing donor cards, friends embracing their lives, their loved ones, and realizing how important it is to live in the moment while questioning what is truly important to them, then the scale starts to even out a bit. I don't know, by the time I am done here in this life and all of the data has been collected then it may be possible for the equation to actually be balanced. This was a perspective that I had not viewed before and I thought it was worth sharing.
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Thank you for sharing that George, it also helps me realize what i have done for others (due to my illness). What an awesome conversation that must've been, i am so thankful to your friend for helping you realize that there is some good in this damn disease, even though we are not able to benefit much from the goodness, we can get others to and that is a very comforting thought to me. :cuddle;
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Those are great thought's George. I myself just have to keep believing something good will come from this disease. Not necessarily for myself but for others around me. If it is only awareness I guess I am good with that.
I do know at the time when I started dialysis my kids were just in their early teens, starting to get in a little shit once in a while. Once my machine was at home, it didn't take long before every Tuesday and thusday evening my dialysis room would fill up with my kids and their firends to watch movies. Sleeping bags and blankets wall to wall in my little room. Some of the kids even started bring their own movies they rented. I got to know my kids friends well and it kept them all inside being safe and not getting in trouble. I miss those days. :( I always believe if the neighborhood kid's are at your house all the time then you always know where yous are.
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Thanks for sharing, George. They are very special considerations indeed. I had considered those around me, to a degree, but I was more worried about the negative impact it had had on them (e.g. the worrying my family have been through etc) but there can indeed be positive effects on them too, and I hadn't even put this into the equation myself.
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I know what you mean about the negative effects on others and I AM still torn/confused about the question. I simply realized that my main focus had been a selfish one (for me) considering relationships lost and destruction to my life. Also not to be all "look at the bright side of things" type of person (I'm not really a chippery type of person) but there ARE two sides to every coin (as much as I hate hearing crap like that) and when there is a negative there (according to science) is a positive. "For every action there is an equal and opposite reaction," which may be truthful. I have lost relationships.....but......I have gained some too (IHD among others) and I may not even ever know the positive impact that has had. I do know some of you have influenced me in a positive way so that has to count for something and there are a lot of lurkers that may have taken something they desperately needed from my/your experience. I really don't know but the main thing I got out of the conversation was a feeling of a bit of selfishness. If my Uncle is going to spend less time at work and more time with his little girl because of realizing how delicate and precious life is then I will take that positive, even if it makes me cry because I don't understand why it has to be at my expense, and I will consider it in the great scheme of things.
It should be noted that these are just thoughts, I don't necessarily think they are right or wrong, simply an idea.
Brenda, something good will come but thats not to say that it will be for us. Then again it may all just be bull shit too and we all just got screwed?
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George, excellent thoughts! I hate what this disease has done to my life. I have lost my health, my job, friends and even my church. BUT, I know at least one person has been positively effected by me having this. My sweet Beth knows that NOW is what is important. She is grabbing life and living as fully as she can. And people on IHD have no idea how much they have helped me in a positive way. Especially Epoman. Would I change it? I would change many things in my life, but then again, those are the things that made me who I am. I do wish I had known earlier that I didn't have to do everything myself, things didn't have to be perfect. I spent too much time worrying about pleasing the world around me and no time taking care of myself. Hopefully, those are lessons I can pass on.
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Also not to be all "look at the bright side of things" type of person (I'm not really a chippery type of person)
I can understand that, 'cause I'm not an overly bright-chirpy type myself, though I think I'm definitely happier these days than I have been in the past. But I still often wonder "why me?" - we are all but human, there'd be something wrong with us if we DIDN'T think this at least some of the time!
I spent too much time worrying about pleasing the world around me and no time taking care of myself.
Oh my goodness, so did I! I can't tell you how much. When I decided to take care of myself - surprise, surprise, but some of those supposedly "good friends" melted away mighty quickly. It hurt badly for a long time, but eventually I accepted it. I don't need people like that.
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I try not to think that I just got screwed George but always it's in the back of my mind. I try hard to be fairly positive, i am not always the most positive person in the world but I try to be for others more so than for myself. The world doesn't seem to revolve around me being personally happy anymore, it's more about the people around me being happy that counts. Right or wrong it doesn't matter. All I know is this is not what I had planned for my life. And what is selfish all about, wanting to be happy, wanting to be free to do the things you want, wanting to live pain free, wanting to see your children and grandchildren grow? I don't think any of us wanting our "before kidney failure" lives back is selfish at all. We just can't dwell on it. Yes our friends change, our relationships with loved ones and just the world in general seem to change with this disease but what can you or I do? I have learned to hold on tight to the people and things I have because I feel what is left is what is real. :twocents;
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Its threads like this where I feel humbled by the courage and sheer bravery of the people on IHD. The way you cope with some of the very worst aspects of this desease is truly amazing. One day I know that I will have to cope with all the kind of debilitating symptoms that many kidney failure patients have to live with because at the moment I am fairly symptom free and as they say 'I ain't seen nothin' yet' But when I do, I know there are people here whose courage and support will inspire me to live through it in a positive way. Just wanted to say this. :grouphug;
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Thank you Ken, for those kind words. I agree with the parents, who've talked about the impact dialysis had on their kids. My son is so much more aware of my situation, he lived with it, he was there when I had peritonitis for the first time, he was there when I tried manual AND the cycler, and he was there when I had to have the tube redone this past December. Kids remember that. It gives them more compassion for others, I think.
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I hadn't thought much about the impact on kids, as I don't have any, but this discussion does remind me of when my mother discovered she had type 1 (insulin-dependent) diabetes when she was a slim-built, 30 year old woman. She was quite unwell, and we didn't fully understand as we were quite young, but we certainly did learn how an illness can affect a person's whole lifestyle.