Would you change it?

[st789]

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.

[keefer51]

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.

[stauffenberg]

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.

[pierrat]

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.

[Bette]

I would change my situation in a heart beat.  I would love to have my health just not be an issue for me.

[goofynina]

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 

[kelliOR]

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...............

[Ang]

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.

[mcjane]

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.

[Falkenbach]

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.

[pierrat]

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

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.

[RichardMEL]

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!

[jbeany]

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.

[Sluff]

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.

[goofynina]

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 

[boxman55]

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

[st789]

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.

[Falkenbach]

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!

[Sluff]

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

[Falkenbach]

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.

[George Jung]

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.

[Amanda From OZ]

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

[Falkenbach]

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.

[George Jung]

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.

[RichardMEL]

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...