Why do you hate dialysis?

[Mr. Ho Ho Ho]

Lets see - where does one start - yes I'm thankful that dialysis was invented and that I'm still alive but I still hate dialysis and I hate my kidneys even more for failing. Here  I set with a plastic tube coming out of my gut - looks great coming out of a bathing suit - feels even better hanging around during sex - I am either too full of fluids or too dry - I can not eat the food I love - I can not lift or bend like I use to and I have to hook myself up to a machine every night and do an afternoon exchange to live. I have to go to the doctors all the time and when I'm not seeing a doctor - I have to stay home and wait for my supplies to come and I had to give up a full room in my house to keep my supplies. I can not come and go as I please. I always have to think everything through and plan before I can go anywhere or do anything. Is that enough reasons? Oh, wait you know whats even better? ......because it gives me an excuse to just be MEAN and  EVIL. I just say what ever I want to people  - what are they going to do... LOL Oh wait -I did that before my kidneys failed..........

Windywoo2u 

[boxman55]

you realize how little of a social life you have. You work from 7 to 4:30 then drive to the center and start Dialysis at 5:30 then get done at 9 then get home at 9:30 you have just enough energy to eat something and then fall a sleep this is 3x a week the other two nights you just want to sleep when you get home. I can't take a normal shower, everyone is always asking how you feel and how did it go. you try to go to the state high school finals football game but your center wouldn't change your time so you can't go so you tell your friends again you can't do something and so they just stop asking, and on and on.................IHD

[angela515]

after reading some oher's replies, it made me hink of some more reasons I hate dialysis... for me, i am a single mom of 2 beautiful children.. i cant realy date while on dialysis... as i scare most men away by just saying i am sick, by saying i already have 2 kids... then i got this dang PD cath coming out of my stomache, how attractive is that!!?? I feel so, ugly with it... i dont even wanna try to find someone wo will take a chance on someone who is on dialysis... so im lonely... and feel like i will be this way forever (seems like forever waiting for a kidney)... i just want a transplant so bad so i can feel sorta pretty again... BLAHHH 

[angieskidney]

Tonight my dad took Sandman and I out to dinner and the waitress goes to refill my cup and I had to grab the cup away (I didn't care if she spilled it all over the table. Her fault for not asking and just assuming! As it is I had tea and she was pouring coffee).  The other day we were out to dinner with my mom and I said I didn't want  a drink because I can just take sips of Sandman's and the waitress said I have to get a drink because it is part of the coupon my mom was using.

I hate dialysis because I am tired of the fight it takes to just enjoy a meal and all the explaining I must do over and over again. I also hate not being able to relax and take a break from the mental calculation of my daily fluids.

But one thing about catheters sticking out of the body when I was on PD, I noticed that people don't really care after they know it is just part of your health requirement. I have had a few boyfriends while I had the catheter. Now that I got the fistula I like to freak people out telling them to feel it and watching them jump! lol

[angela515]

Lol, yah... when i was with my ex and I got my cath he was fine with it... but now that i single and when i first start talkin to someone it sucks i have to explain what dialysis is, most ppl have never heard of it.. or thought it was nothing seous.. like we can just choose to do it or something and if not we will still be fine 

I hate whn im out to eat and people stare at me when im taking my Renegel... i wanna say WHAT ya never seen sumone take meds before?? 

[Epoman]

Tonight my dad took Sandman and I out to dinner and the waitress goes to refill my cup and I had to grab the cup away (I didn't care if she spilled it all over the table. Her fault for not asking and just assuming! As it is I had tea and she was pouring coffee).  The other day we were out to dinner with my mom and I said I didn't want  a drink because I can just take sips of Sandman's and the waitress said I have to get a drink because it is part of the coupon my mom was using.....

http://ihatedialysis.com/forum/index.php?topic=65.msg21636#msg21636 

Even sandmansa thinks it's a good idea. I'm surprised he didn't mention it.

http://ihatedialysis.com/forum/index.php?topic=65.msg21638#msg21638 

[angieskidney]

Tonight my dad took Sandman and I out to dinner and the waitress goes to refill my cup and I had to grab the cup away (I didn't care if she spilled it all over the table. Her fault for not asking and just assuming! As it is I had tea and she was pouring coffee).  The other day we were out to dinner with my mom and I said I didn't want  a drink because I can just take sips of Sandman's and the waitress said I have to get a drink because it is part of the coupon my mom was using.....

http://ihatedialysis.com/forum/index.php?topic=65.msg21636#msg21636 

Even sandmansa thinks it's a good idea. I'm surprised he didn't mention it.

http://ihatedialysis.com/forum/index.php?topic=65.msg21638#msg21638 

That is what I do when they actually give me a napkin. This place only had those big ones you put in your lap. it was in my lap when she came around.

[Epoman]

Tonight my dad took Sandman and I out to dinner and the waitress goes to refill my cup and I had to grab the cup away (I didn't care if she spilled it all over the table. Her fault for not asking and just assuming! As it is I had tea and she was pouring coffee).  The other day we were out to dinner with my mom and I said I didn't want  a drink because I can just take sips of Sandman's and the waitress said I have to get a drink because it is part of the coupon my mom was using.....

http://ihatedialysis.com/forum/index.php?topic=65.msg21636#msg21636 

Even sandmansa thinks it's a good idea. I'm surprised he didn't mention it.

http://ihatedialysis.com/forum/index.php?topic=65.msg21638#msg21638 

That is what I do when they actually give me a napkin. This place only had those big ones you put in your lap. it was in my lap when she came around.

Ahh, ok how about placing a spoon on top of the glass, that would make the waitress question a refill or bring your own napkin that you would carry in your purse?

[strateup]

I agree with all of the above reasons, but I culd add a few more.  I am blessed/cursed with a good fistula.  Because I have a good fistula I am often used as the training dummy for the new techs, Ouch that hurts! 

[mallory]

after reading some oher's replies, it made me hink of some more reasons I hate dialysis... for me, i am a single mom of 2 beautiful children.. i cant realy date while on dialysis... as i scare most men away by just saying i am sick, by saying i already have 2 kids... then i got this dang PD cath coming out of my stomache, how attractive is that!!?? I feel so, ugly with it... i dont even wanna try to find someone wo will take a chance on someone who is on dialysis... so im lonely... and feel like i will be this way forever (seems like forever waiting for a kidney)... i just want a transplant so bad so i can feel sorta pretty again... BLAHHH

Angela, I agree with you!  I'm single, and I'd like to have a relationship but it's so hard to describe all of this to a guy.  I'm already short and fat, now I've got this lovely catheter, that's so appealing to men!

Here's another thing I hate; I hate that I've worked at this job for 25 years, and when a really good promotion came up this year that truly should have been mine, I did not get it.  Because they said they worry the stress might be too much for me, or I might need more sick time and they want me to have the freedom to take it.  I've worked here TWENTY FIVE YEARS!  I love my job!  I've done a great job!  But, I will never get promoted again because they think I'm "sick".

I know that I have a good life.  I am thankful for the good things in my life, but I do hate dialysis, and I do hate what ESRD has done to my life.

[kitkatz]

you realize how little of a social life you have. You work from 7 to 4:30 then drive to the center and start Dialysis at 5:30 then get done at 9 then get home at 9:30 you have just enough energy to eat something and then fall a sleep this is 3x a week the other two nights you just want to sleep when you get home. I can't take a normal shower, everyone is always asking how you feel and how did it go. you try to go to the state high school finals football game but your center wouldn't change your time so you can't go so you tell your friends again you can't do something and so they just stop asking, and on and on.................IHD

Man on man do I know how that feels!  Work from 7-2 with preteens at middle school, then MWF off to dialysis 3 to 7, home to dinner if it is fixed at 8p.m., then off to watch TV in bed and to sleep.  It gets to be a grueling schedule.

[stauffenberg]

The inventor of the modern form of dialysis, Willem Kolff, thought it was being abused when used for long-term therapy, and viewed it instead as appropriately used only for acute dialysis in patients for a short time.  I agree with him and feel that dialysis prolongs life in an indecent and hideous way.  I conceive of it in terms of the following example:  Suppose a machine were invented that would allow corpses to move around the surface of the Earth like zombies.  They could think, see, speak, eat, and sleep, but they would always be exhausted, in a state of rapid physical deterioration, and forced to endure countless hours of medical treatment on the machine, as well as medical monitoring and diagnostic interventions in additioin to all of that.  They could only live a short while because the rapid deterioration of their health under these circumstances.  If all of this were possible, would the corpses be grateful to the inventor of the machine which enabled them to return to life for a few years as zombies, or to the people who had dug them up out of their graves?

You may say that if I viewed dialysis in such a negative light I should simply have refused to initiate this therapy in my own case, but it is very hard to summon the moral courage to do the right thing if it involves deliberately chosing your own death.  The fact that the patient is confronted by this dilemma, however, comes from the existence of the dialysis machine, and it is not the patient's fault if this tempts him into choosing a form of life which is an insult to the human spirit.

[Fighter]

tell me what do you really hate in dialysis?

I have a love/hate relationship with dialysis. I am of course grateful that it has been invented and I admire not only its initial creator but every single person who has contributed to its improvement. It gives me faith in humankind that we can come up with such an ingenious invention and actually make it work on a large scale. It's tough not to resent the fact that I need a machine to survive but with time I've learned that it's kidney disease that I hate (and I hate it BIG TIME), not really dialysis.

But to list the things that drive me nuts about the 'dialysis lifestyle', obviously I could do without the waste of precious time, the fluid restrictions, the difficulty to travel and the tiredness...

after reading some oher's replies, it made me hink of some more reasons I hate dialysis... for me, i am a single mom of 2 beautiful children.. i cant realy date while on dialysis... as i scare most men away by just saying i am sick, by saying i already have 2 kids... then i got this dang PD cath coming out of my stomache, how attractive is that!!?? I feel so, ugly with it... i dont even wanna try to find someone wo will take a chance on someone who is on dialysis... so im lonely... and feel like i will be this way forever (seems like forever waiting for a kidney)... i just want a transplant so bad so i can feel sorta pretty again... BLAHHH

Angela, I agree with you!  I'm single, and I'd like to have a relationship but it's so hard to describe all of this to a guy.  I'm already short and fat, now I've got this lovely catheter, that's so appealing to men!

Is there already a dedicated thread covering Dating on Dialysis? It may sound pathetic but it's been one of my big concerns for the past couple of years. I'm sure some of you other single patients can relate...

[Epoman]

tell me what do you really hate in dialysis?

I have a love/hate relationship with dialysis. I am of course grateful that it has been invented and I admire not only its initial creator but every single person who has contributed to its improvement. It gives me faith in humankind that we can come up with such an ingenious invention and actually make it work on a large scale. It's tough not to resent the fact that I need a machine to survive but with time I've learned that it's kidney disease that I hate (and I hate it BIG TIME), not really dialysis.

But to list the things that drive me nuts about the 'dialysis lifestyle', obviously I could do without the waste of precious time, the fluid restrictions, the difficulty to travel and the tiredness...

after reading some oher's replies, it made me hink of some more reasons I hate dialysis... for me, i am a single mom of 2 beautiful children.. i cant realy date while on dialysis... as i scare most men away by just saying i am sick, by saying i already have 2 kids... then i got this dang PD cath coming out of my stomache, how attractive is that!!?? I feel so, ugly with it... i dont even wanna try to find someone wo will take a chance on someone who is on dialysis... so im lonely... and feel like i will be this way forever (seems like forever waiting for a kidney)... i just want a transplant so bad so i can feel sorta pretty again... BLAHHH

Angela, I agree with you!  I'm single, and I'd like to have a relationship but it's so hard to describe all of this to a guy.  I'm already short and fat, now I've got this lovely catheter, that's so appealing to men!

Is there already a dedicated thread covering Dating on Dialysis? It may sound pathetic but it's been one of my big concerns for the past couple of years. I'm sure some of you other single patients can relate...

I was thinking about a section for dating/relationships, look for a post talking about it.

- Epoman

[Zach]

The inventor of the modern form of dialysis, Willem Kolff, thought it was being abused when used for long-term therapy, and viewed it instead as appropriately used only for acute dialysis in patients for a short time.

Please link us to that quote.

Personally, I don't believe you have your facts straight about Willem Kolff's thoughts about using his invention for long-term therapy.  Please show us the exact quote from a reputable publication.

[jbeany]

The inventor of the modern form of dialysis, Willem Kolff, thought it was being abused when used for long-term therapy, and viewed it instead as appropriately used only for acute dialysis in patients for a short time.

Please link us to that quote.

Personally, I don't believe you have your facts straight about Willem Kolff thoughts about using his invention for long-term therapy.  Please show us the exact quote from a reputable publication.

"Here's a real quote from Kolff, from the biography on the Academy of Acheivement website - "The exciting thing is to see somebody who is doomed to die, live and be happy."

And this, from the biography on the same page-
Over the opposition of many physicians, Dr. Kolff wanted to give the patient more control of the process, so patients could perform their dialysis at home, without a doctor's supervision. In 1975, he introduced the Wearable Artificial Kidney, an eight-pound chest pack with an 18-pound auxiliary tank."

If he only wanted it used for short term, why would he make a home unit?

And from the bio an the Membrana website (they make the filters used in dialysis)      
                     

"Among his patients in Groningen was 22-year old Jan Bruning, who was dying slowly and painfully from kidney disease. The young Dr Kolff realised that if he could remove the toxins gradually building up in the young man's blood, which would normally be removed by the kidneys, he could be kept alive - but there was no technology available at the time to accomplish such a task. "I felt helpless telling his poor mother there was nothing we could do for him" wrote Dr Kolff many years later. This was the trigger that started Dr Kolff experimenting with a device that could temporarily replace the kidney in removing urea and other excretory products from the body. "

His reason for starting the research in the first place was a patient with chronic, not acute kidney failure.

Sorry stauffenberg - unless you can come up with another quote. . .I don't buy your take on Kolff.

[Zach]

Thank you, jbeany!!

stauffenberg, the truth will set you free.

[angela515]

The inventor of the modern form of dialysis, Willem Kolff, thought it was being abused when used for long-term therapy, and viewed it instead as appropriately used only for acute dialysis in patients for a short time.  I agree with him and feel that dialysis prolongs life in an indecent and hideous way.  I conceive of it in terms of the following example:  Suppose a machine were invented that would allow corpses to move around the surface of the Earth like zombies.  They could think, see, speak, eat, and sleep, but they would always be exhausted, in a state of rapid physical deterioration, and forced to endure countless hours of medical treatment on the machine, as well as medical monitoring and diagnostic interventions in additioin to all of that.  They could only live a short while because the rapid deterioration of their health under these circumstances.  If all of this were possible, would the corpses be grateful to the inventor of the machine which enabled them to return to life for a few years as zombies, or to the people who had dug them up out of their graves?

You may say that if I viewed dialysis in such a negative light I should simply have refused to initiate this therapy in my own case, but it is very hard to summon the moral courage to do the right thing if it involves deliberately chosing your own death.  The fact that the patient is confronted by this dilemma, however, comes from the existence of the dialysis machine, and it is not the patient's fault if this tempts him into choosing a form of life which is an insult to the human spirit.

There is so many things I want to say to you right now in response to this, but none of them are good. and so i will hold my tongue. I will say that I totally disagree with your views. Comparing a dialysis machine to a zombie... is, pretty stupid and not even close to the truth. I personally think if you hate dialysis THAT much and don't even think it should be used to keep people alive, you personally should not do it...Hypocritical of you to put it down and still use it the way you do.... idunno... I dont think its wrong to hate dialysis.. but you speak about it in such a way that makes it seem like were being sinful by doing dialysis... I am upsetting myself just thinking about this.. so i will stop.

[DeLana]

The inventor of the modern form of dialysis, Willem Kolff, thought it was being abused when used for long-term therapy, and viewed it instead as appropriately used only for acute dialysis in patients for a short time.  I agree with him and feel that dialysis prolongs life in an indecent and hideous way.  I conceive of it in terms of the following example:  Suppose a machine were invented that would allow corpses to move around the surface of the Earth like zombies.  They could think, see, speak, eat, and sleep, but they would always be exhausted, in a state of rapid physical deterioration, and forced to endure countless hours of medical treatment on the machine, as well as medical monitoring and diagnostic interventions in additioin to all of that.  They could only live a short while because the rapid deterioration of their health under these circumstances.  If all of this were possible, would the corpses be grateful to the inventor of the machine which enabled them to return to life for a few years as zombies, or to the people who had dug them up out of their graves?

You may say that if I viewed dialysis in such a negative light I should simply have refused to initiate this therapy in my own case, but it is very hard to summon the moral courage to do the right thing if it involves deliberately chosing your own death.  The fact that the patient is confronted by this dilemma, however, comes from the existence of the dialysis machine, and it is not the patient's fault if this tempts him into choosing a form of life which is an insult to the human spirit.

Maybe I shouldn't comment on this since I'm not a dialysis patient; however, I'm an RN who worked on hospital floors (oncology, cardiac, medical) before working in a dialysis clinic for 5 years.  First, many of my dialysis patients would disagree that their life with dialysis leaves them as "zombies".  And of my non-ESRD hospital patients, many would have been grateful to have a machine that would allow them to live - rather than succumb to liver failure, heart disease, or cancer.

Yes, dialysis is far from perfect, but it allows you to live long enough to perhaps get a transplant or better therapies in the future (the NxStage home dialsyis machine comes to mind). 

JMHO.

DeLana

[Zach]

Your comments are always welcome, DeLana!!     

[Epoman]

Your comments are always welcome, DeLana!!     

The man speaks the truth. 

[angieskidney]

The inventor of the modern form of dialysis, Willem Kolff, thought it was being abused when used for long-term therapy, and viewed it instead as appropriately used only for acute dialysis in patients for a short time.

Please link us to that quote.

Personally, I don't believe you have your facts straight about Willem Kolff's thoughts about using his invention for long-term therapy.  Please show us the exact quote from a reputable publication.

I have actually heard of this article but haven't read it myself.

His reason for starting the research in the first place was a patient with chronic, not acute kidney failure.

Sorry stauffenberg - unless you can come up with another quote. . .I don't buy your take on Kolff.

Thanks for that I couldn't find it myself! 

Yes, dialysis is far from perfect, but it allows you to live long enough to perhaps get a transplant or better therapies in the future (the NxStage home dialsyis machine comes to mind). 

JMHO.

DeLana

I agree! I would have died when i was 16 if it wasn't for dialysis but instead look at me! I am 33 and engaged to a man who actually accepts the fact that I am on dialysis (and he fell in love with me while I still had the PD cath in my belly!!)