I look at dialysis as a blessing.

[hurlock1]

I go to dialysis, not only because it's what I do, but it's what I have to do in order to stay alive. My life's not so bad, I have aching joints and muscles. I can't stand for too long, that could be from something else, I have to walk with a cane, Other people in the center have to use walkers, Wheel Chairs! I weigh 300+ lb. I keep seeing the word obese on commercials and the news. As if it were some kind of crime.
But I don't want somebody's kidney. The people at the center say, "wouldn't you like to live for ten years without going to dialysis?" That sounds SO impermanent. I would get a kidney, and sit around and wait for it to fail, and then either die or be back on dialysis. It all sounds so hopeless. I had a friend, she was the kind of person that never really was satisfied with her place in life. She seemed angry. She was a brittle Diabetic. (At the time I didn't really know anything about this) She had been struck almost blind, she could see a little, and her kidneys failed. She only had to go to dialysis a short time, and she got a kidney from her mother. She got the kidney, and lived it up, I guess, She had to take the anti-rejection drugs, that made a fairly pretty girl's face swell up and made her look like a. . .person with her face swollen up. anyway, she wasn't a pretty girl anymore. Her mother died from complications from the surgery. About three years later, she threw the kidney, had to go back on dialysis, I guess she, being the person she was, didn't like dialysis and didn't go, and she died too.
I guess that I'm the type of person that likes some permanence. Sure, it's a hassle getting up, taking a shower, getting dressed, and going to the center, getting hooked up, and laying around for five hours. But! It's no worse than going to work.  At my center, The chairs aren't "Uncomfortable" There's a Tv that works most of the time. There is an internet connection, even though it's got "web sense" that won't allow you to go to any website that "They" decide is unsuitable, all kinds of stuff, I just don't understand, but it's ok. I was thinking of getting a laptop with a wireless connection and just having the freedom to go anywhere I wanted on the internet, but even though I have to use 1 finger on my left hand to type with the on screen keyboard, and there's no place to plug in a usb anything on the 'puter I guess I can live without it.
I guess that I kinda' feel safe at dialysis with the permanence. At least there won't be any operations in the foreseeable future. I HATE going to the hospital. They Hate for me to be there because I'm such a pain in the back (only lower) Oh well, It's always something. . .

[Stoday]

Her mother died from complications from the surgery. About three years later, she threw the kidney, had to go back on dialysis, I guess she, being the person she was, didn't like dialysis and didn't go, and she died too.

What an awful story!

Were it not that I disagree with living donors I would feel guilty reading that.

The poor girl who lost her mother in such circumstances. That's all so sad.

[G-Ma]

hurlock...thanks...you stated mostly how I feel and didn't know how to word it.  "Likes some permanence" is what hit the nail on the head.  I don't want to wonder every day when dialysis starts again.  I am used to it and now want to move on to restart my crafts or whatever I can do.   

[okarol]

I am grateful for dialysis - it kept Jenna alive - but not much else. She had a tough time. For her the transplant has made a world of a difference and her living donor is doing fabulously. We have been very fortunate - I know not all transplants work out.
Thank God we have choices.

[Rerun]

I'd rather sit around waiting for the kidney to fail while living a normal life and working, than sit around waiting to die.  That is what I'm doing now. 

Yeah, I can walk and breath and watch TV. 

I guess it depends on what you think a "good" life is.

If you are happy sitting around stuffing donuts in your face waiting for your next dialysis session then fine (not you but people in general), but I like traveling and seeing the world.  I like working for a living and contributing to society and paying INTO Medicare.

Thus, I'm not happy on dialysis.           

[G-Ma]

Wow...thanks rerun...I didn't know donuts were on our food plan but now that I know I'll just run out and get a few dozen....
Unlike what most people think I WOULD rather work...had worked consistently since the age of 4, paid employment since age 17...Most of my depression comes from NOT being able to be employed and since you and most people think I'm not a contributing society member I am more depressed.  Did you even read what you typed???  Ignorant people type like you did.  Come on, get a grip.  We all know there are not enough kidneys for all of us and even if there were, there are many who cannot get one, therefore we all do what we can but don't for a second think we are NOT contributing members of society..shame shame.  I won't even start on paying INTO Medicare.     

[Rerun]

You can eat donuts with binders.

Being happy on dialysis depends on how far you have to fall.  So do NOT tell me that I should be satisfied volunteering once a week around my dialysis sessions.

I'm content, but angry being on dialysis.  My friends are making over 100K a year and I'm sitting at home barley making rent.  I try contributing by volunteering and visiting my uncle who is in a care facility.  Am I contributing to Medicare?  No... I'm taking from Medicare.  Which will be broke by 2017.

I'm not an optimist or a pessimist and definitely not ignorant..... I'm a realist. 

Happy?? No.
Alive??  Yes .... BFD

[G-Ma]

At least you can volunteer.........I am struggling to keep the disability I have and they will not allow me to work OR volunteer......so I exist between home and dialysis...they also do not let me travel beyond 60 miles from home......wonderful eh??? So guess I don't need the large paychecks my friends make...I have struggled with this for 2 years and finally decided yesterday to just make it...otherwise I am only hurting myself....and I believe most of us on dialysis "barely" make rent or any other bills, so none of us is alone in this.

[petey]

Who's "sitting around waiting to die" while on dialysis?  Not my Marvin!  He's living life to the fullest every minute of every day of every week of every month, etc., and has been for 14 years.  Has it been easy for him?  Hell , no!  In fact, he's had probably more set-backs and more complications than your "average" dialysis patient.  But, that hasn't stopped him.

Marvin is on disability and on Medicare.  Of all the things he involuntarily  "traded" for his life on dialysis, he says the ability to work has been the toughest (not for the money but rather for the actual work part of it).  But, it's just one of those things.

And, a life with a transplant is not a cure.  It comes with its own set of problems, too (we know because Marvin's had a transplant).  It's not a walk in the park, either.  (Marvin is back on the UNOS list and waiting again because that's what he wants, but it doesn't mean that ESRD goes away and your life goes back to what it was pre-dialysis.)

Being a "contributing member of society" doesn't ONLY mean that you have to go out and work.  There's more to it than that -- at least, my Marvin thinks there is.

[bette1]

I am grateful for dialysis, I am sure that people waiting for heart or liver transplants would love to have something like dialysis.  I also think about the people who had kidney failure before the 1970's, when dialysis was not paid for by our government, or readily available for everyone who needs it.

Having had both a transplant and been on dialysis, I would much prefer a transplant.  With it you have a chance of getting better, not so with dialysis, you just stay the same or get worse.  I think it is important to count you blessing and be grateful for what you have, but I am always pushing myself to do better, to be better, to do more, and I think that attitude and God's grace have kept me alive with kidney failure for 20+ years. 

But I will not knock anyone else for their attitude.  You do whatevery you need to do to make it through the day.  Plus I contributed for many years working while on dialysis and with a transplant.  I contribute now by taking care of my familily.  Isn't society supposed to help to take care of those that need it?  Many of us worked a lot of years before we needed medicare and social secuity.  That's what they are there for.

[petey]

Having had both a transplant and been on dialysis, I would much prefer a transplant.  With it you have a chance of getting better, not so with dialysis, you just stay the same or get worse. 

Actually, Marvin has gotten better -- much, much better -- since he's been on home hemo (as opposed to in-center hemo).  But, he still prefers a transplant, too.

[bette1]

I wish I could do home hemo, my hubby is not at the point where he could be my partner. 

[RightSide]

I wish I could do home hemo, my hubby is not at the point where he could be my partner.

I feel for you.

I wish I could do home hemo too.
But I live alone.

Kidney failure and lonely bachelorhood don't seem to go together.

[KICKSTART]

I would like to think i have a degree of intelligence but i dont really understand what the original poster of this thread is saying? Are they saying they actually like dialysis? Because its safe . its routine ?  Quote ; its a hassle getting showered , dressed and going to the clinic and lying around for 5 hours ;  !!!! Am i mistaken but do they actually enjoy going to the clinic? To me that makes it sound like someone who is enjoying being ill.  It also makes it sound like they have someone at home waiting on them hand and foot , if the only hassle they have is getting dressed n showered n out the door. Try having this illness on your own , with NO ONE to take care of everything else , then you will know what hassle is !

[Zach]

I would like to think i have a degree of intelligence but i dont really understand what the original poster of this thread is saying? Are they saying they actually like dialysis?

I'm not sure the issue is "like" or "dislike", but rather that dialysis for this poster is more predictable than a transplant.

[hurlock1]

I would like to think i have a degree of intelligence but i dont really understand what the original poster of this thread is saying? Are they saying they actually like dialysis? Because its safe . its routine ?  Quote ; its a hassle getting showered , dressed and going to the clinic and lying around for 5 hours ;  !!!! Am i mistaken but do they actually enjoy going to the clinic? To me that makes it sound like someone who is enjoying being ill.  It also makes it sound like they have someone at home waiting on them hand and foot , if the only hassle they have is getting dressed n showered n out the door. Try having this illness on your own , with NO ONE to take care of everything else , then you will know what hassle is !

In the first place, I don't enjoy being ill. But, when I was young, I thought I was gonna live forever, so I took chances, (drank excessivly, took drugs, motorcycle wrecks, hurt myself) I'm not saying that I did it to hurt myself on purpose, but as the years go by so much of what I did then, hurts now. The only example I have of TRANSPLANTATION has been Candy, the girl, I remember her as a girl, she was 30. And she in my view, had a bad experiance.
Before I  got on dialysis, I told the story to my neph, and he said, "Don't worry, You'll never get a transplant. . . Too big." I have lost 60 lb. but I still weigh 300+ lb.. I am still losing, but i'm not losing because of " the carrot on a stick in front of a donkey", a possibility of a transplant. Candy seemed ill even after her transplant. I dont like operations in general. I understand that a transplant operation hurts Really Bad. I'm 60 years old, my mother died at 56, and my father died at 72. I'm not ready to cross the Pearly gates, but, I don't want to live forever. When I was forty, I still drank. I decided that I didn't want to live past 50. I quit drinking at 41, and I decided that I was wrong, but because I had been hoping that i would die at 50, I  was scared. I hadn't planned on beng alive past the year 2000, so every year since has been on borrowed time. I guess you gotta be careful for what you pray for.
Anyway, I don't love dialysis, I don'y mind it, and I'm grateful for it. And I don't nessicerly want a transplant. To me, right now, I don't need that "carrot on a stick" I may change my mind.
Previously I helped make Tv commercials. There was a lot of learning involved. I moved to Abuquerque, NM from Houston, tx in 2002, thinking that I would be able to get a  job with the skills and references I had, but i couldn't find a job in the media industry. So, I got a job driving the bus. I hated that job! The technology has progressed so far since 2002, and my inability to learn, i'm sunk. With the economy the way it is, I don't think that i'm gonna be taking care of anybody. So,  ahmona just keep going to dialysis and prentending that I enjoy it like I did pretending to like driving tthe bus.
Nobody's gonna hire an old man with his red face swollen up even if he does have a kidney.

[MandaMe1986]

Well let me just say that I don't feel like I am sitting around waiting to die.  I feel like I am learning how to live diffrently.  Look at Zach. He has been going for so long and at his rate can go for so much longer.  It is all on your attitude on life.  I think Dialysis is wonderful.  Those of us who need it, have it.  Yes it is hard, and makes you feel like crap. But we are around. I may be selfish but I want to be here to watch my kids grow and become adults.  And Dialysis is gonna help me do that.  I don't agree with living donors. Yes I have two very young children, and I need to keep them in mind.  And if for what ever reason Dialysis wasn't working anymore I would look into living donors.  But as long as I can make it on my own without it I will.  I know that I might change my mind later on down the road.  But I am hard  headed, and it is gonna take a lot to change my mind. 

Dialysis is hard, life is  hard.  We just take what God hands us and find a way to overcome.  And we all can do that, he wouldn't trust us with it if we couldn't. 

[BigSky]

"I would get a kidney, and sit around and wait for it to fail, and then either die or be back on dialysis."

People who get kidneys for the majority of the  time resume normal lives and do not sit around and wait for it to fail. 


To those that do this or say they would sit back and wait for it to fail, they have bigger problems and its not related to kidney failure and or getting a transplant.

[Swee_tone]

I am grateful for dialysis, I am sure that people waiting for heart or liver transplants would love to have something like dialysis.  I also think about the people who had kidney failure before the 1970's, when dialysis was not paid for by our government, or readily available for everyone who needs it.

  I think it is important to count you blessing and be grateful for what you have, but I am always pushing myself to do better, to be better, to do more, and I think that attitude and God's grace have kept me alive with kidney failure for 20+ years. 

 I contribute now by taking care of my familily.  Isn't society supposed to help to take care of those that need it?  Many of us worked a lot of years before we needed medicare and social secuity.  That's what they are there for.

Good points.

[Rerun]

"I would get a kidney, and sit around and wait for it to fail, and then either die or be back on dialysis."

People who get kidneys for the majority of the  time resume normal lives and do not sit around and wait for it to fail. 


To those that do this or say they would sit back and wait for it to fail, they have bigger problems and its not related to kidney failure and or getting a transplant.

Maybe I do have deeper problems, but the cloud of "this won't last forever" followed me around for 17 years.  I would go along fine and then six months would go by and it was back to the clinic for labs and the reality would hit me. 

[bette1]

Just to let you know the operation for a kidney transplant is not very painful.  I had a c-section and that was much worse.  I actually started feeling better as soon as I woke up.  To me, the potential benefits totally outweighed the risks.  I lived a normal life for the years I had the transplant, and was able to have my daughter, something I thought would never happen.  I did not spend all those years being sick.
 

[monrein]

I too did not find the transplant surgery horrific.  There was some pain of course but there are meds to help with that and the longer-term benefits far outweighed the short-term discomfort.

I know that my transplant experiences have been extremely fortunate (so far and I'm knocking on wood too) but I definitely did not think that failure would happen at any time.  I knew intellectually that it COULD, but that was just even more incentive to do things that were important to me so that I would feel I'd used the time given to me in reprieve as best as I possibly could have.  I definitely feel that I did that and I'm excited about doing it again.  No time to waste, true for every human being really but especially true when one is on transplant time.

[del]

Well let me just say that I don't feel like I am sitting around waiting to die.  I feel like I am learning how to live diffrently.  Look at Zach. He has been going for so long and at his rate can go for so much longer.  It is all on your attitude on life.  I think Dialysis is wonderful.  Those of us who need it, have it.  Yes it is hard, and makes you feel like crap. But we are around. I may be selfish but I want to be here to watch my kids grow and become adults.  And Dialysis is gonna help me do that.  I don't agree with living donors. Yes I have two very young children, and I need to keep them in mind.  And if for what ever reason Dialysis wasn't working anymore I would look into living donors.  But as long as I can make it on my own without it I will.  I know that I might change my mind later on down the road.  But I am hard  headed, and it is gonna take a lot to change my mind. 

Dialysis is hard, life is  hard.  We just take what God hands us and find a way to overcome.  And we all can do that, he wouldn't trust us with it if we couldn't.

My husband is certainly not sitting around waiting to die!!!  he is living each day to the fullest.  This summer will be 12 years on dialysis and he was pre dialysis 10 years before that.  It has been his choice not to have a transplant or to go on the transplant list. he is living a very "normal" life on dialysis and does all the things that he enjoys doing.  You play the hand that you are dealt and make the best of it.  He does has had his bumps in the road but then everybody has those. His dialysis treatments have rarely made him feel like crap.  Usually he feels good when he goes on and good when he is finished.

[hurlock1]

"I would get a kidney, and sit around and wait for it to fail, and then either die or be back on dialysis."

People who get kidneys for the majority of the  time resume normal lives and do not sit around and wait for it to fail. 


To those that do this or say they would sit back and wait for it to fail, they have bigger problems and its not related to kidney failure and or getting a transplant.

I think that you're missing my point. My original diatribe was to get information. I just wonder if you're reading the whole thing. I am not planning on getting a kidney! The doc told me that I would never get a kidney, "Too big" maybe I'm just eating sour grapes. Or maybe I'm just making the best of a situation. I can barely walk, can barely sign my name, feel like shit when I get off dialysis, but somehow, I feel basically healthy. Strange I know, but overall, I feel better now than I did before I started dialysis. I didn't start this thread to offend anyone. I just think that dialysis is a blessing.

[RichardMEL]

I feel for you.

I wish I could do home hemo too.
But I live alone.

Me too!

Kidney failure and lonely bachelorhood don't seem to go together.

So true... but that's why I'm here!! The women of IHD keep me going!! 

On a more serious note in keeping with this thread (not that I'm not serious about my IHD girls !! ) I am more in the ReRun mould. I am SO happy I can work mostly full time and contribute (yes, pay taxes) - not only is it something to do that is not dialysis but it is something positive (well OK sometimes I feel like I'm beating my head against a brick wall at work.. but everyone has those days )... but it is social for me - I interact with my co-workers and mates, and feel like I am doing something positive (oh and earning money that pays for cat food!).

As for the transplant issue and "sitting around waiting for it to fail" - I think if someone was to go in with that attitude I would NOT recommend a transplant! Attitude can have a lot to do with things that I have seen. If you go in thinking it's going to fail real soon then chances are, your boy will find a way to make it happen. I am NOT suggesting to go in thinking "I'm cured for life" - that is clearly nonsense and we all know transplantation is another treatment option - not a cure. However whenever I am lucky enough to get that call I intend to go into it as positive as I can and as sure as I can to get as much time as I can with such a beautiful gift and to live as much as I can - not "waiting for it to fail"

Obviously that would always be a concern in the back of my mind, and like Rerun says - when lab time comes around obviously that would be a thought/concern... but I've already had that when I was waiting to hit ESRD... I'd see the doc every six then every three months and DREAD the visit waiting for the all important numbers to potentially dictate what would happen. Massive relief when the doc would say all was "stable" or "we won't change anything this time" or whatever... so absolutely I understand what Rerun is saying and I am sure I will be like that whenever my own transplant journey gets going.. but that's part of what it is all about. I have faith that every day the experience of the medicial folks, and medications and technology is improving such that transplants are, in general, lasting longer and bouts of rejection can be dealt with.

Bottom line it is a future I am waiting for with bated breath and planning for - to have the freedom to travel again, enjoy things much more again and stay away from dialysis - and I intend to grab hold of the opportunity when it comes with both hands and hold on tight for as long as I can. There's too  much to do and see!!!!