How do you respond when people tell you that doing 10 hours of PD is not so bad?

[Goofy]

I'm starting PD this Monday and when I tell people about it they say "oh it can't be that bad".  They think sitting on a machine for 8-10 hours 7 days a week is no big deal.  I get so angry when they say that.  I tell them that is not only bad physically being tied to a machine to keep you alive and well but even mentally its hard.

I've actually been getting really angry when people say that.  I just want to say so bad that maybe they should try it and see how much fun it is.  Do people say that to you about dialysis?  What do you say back?








EDITED:Moved to PD/home dialysis section-kitkatz,Moderator

[RichardMEL]

Well you wouldn't quite be sitting on the machine would you? you'd be sleeping (or trying to ) if it's overnight pd on the machine. I think I'd personally prefer that to in center hemo.. but that's a whole other issue.

It's easy to say "oh that doesn't seem too bad" when it's not you, and it's hard to understand all the various issues involved when you're not.

If I were you just focus on what this will mean for you that's better than how some folks have it. For example:

* You won't have to follow any fluid restrictions, and few dietry ones.
* You're getting a much gentler dialysis - good for your body - and much more than someone on in-center, which should really normalise how you feel and give you energy and freedom to do what you like during the day
* If you can lie in bed and sleep on the machine than sessions will pass that much more quickly

In the end it shouldn't matter what others say or think but how YOU feel in yourself about it.

[okarol]

Give them one of these!

[Jean]

Just what I was going to say too.  Who cares what the not knowledgeable people say. Tell them you are just getting extra beauty rest.

[girliekick]

honestly, i tell them it is better than the hell i went through w hemo. But it is not w o its problems. So maybe a it could be worse.... But it certainly could be better. Ppl are full of silly ignorance. U gots lots to learn n  the coming weeks  ..... Haha u could ask them to accompany u to all ur training then they could do it for u. Might make um think
girl

[Rerun]

Take them to your house to show them the invasion in your bedroom.  All the supplies!  It is horrible what you have to do to stay alive.  I agree that it is much better than hemo with needles, but suffering is relevant and if it is happening to you, it is the worst.  It is not happening to them, so it is no big deal. 

I know how you feel.  You life has changed.     

[calypso]

I guess this is a bad time to tell you I'm one of those that said it's not that bad. But then I felt really well on PD (well up until I got peritonitis that is). I did it for the last 6 years.

It's a lot better than hemo has been for me. So far on hemo I've clotted the dialyser 3 times (once in the hospital while recovering from peritonitis and twice at the clinic). My chest wall catheter for hemo is also clotting and I'm not getting good flows from it. And when you clot the dialyser they can't give you all your blood back. Also I'm getting high negative pressure which causes the red blood cells to get crushed furthering my descent back into anemia. I saw a tech drop something on the floor and then put it back into the little 'off kits' they make, worrying me about when the next bout of infection is going to take one of us (with my luck me!) down for the count again. Feeling totally knackered after a hemo session so I sleep all day didn't happen to me on PD. Blood pressure fluctuations from high to low that try your cardiovascular system more then your patience. Not to mention having to commute to and spend 4 hours at a clinic rather then in the comfort of your own home like PD. Having rules like you can't eat on dialysis because you might choke to death on hemo. On PD I could eat when I wanted, and I often did snack while on the machine. If only I HAD choked to death, then i wouldn't have gone thru all this hemo crap! But hey these are some of the trials and tribulations of being a renal failure patient, and I try to take it in stride. I also try to keep from being envious of you because you get to do PD while watching you not even appreciate it. Everyone is different, I know, and maybe PD is rough for you, maybe it's not the best form of treatment for you but when I was on PD I was like you, I thought it was hard, until things got even harder when I had to switch to hemo. But I know what you mean too, none of them are as easy as having working kidneys I think we can all agree on that.

Anyway, good luck to you and here's hopiung it seems easier to you once you get into the routine of things.

[peleroja]

I gotta be honest with you.  I've been on PD for the last 6 years, and frankly, I don't think it's all that bad.  I laugh about the fact that I only get to see my one wall in this room once a month due to all the Baxter boxes.  I use an extension so I can get up in the middle of the night if I feel like it and wander as far as my tether allows me, which is the kitchen and the den.  I watch tv, read, wash dishes, tidy the kitchen, etc.  I like being up and about when everything around me is quiet.  Your life is what you make of it in spite of "obstacles."  Today you are one kind of "normal" and Monday you will be a different kind of "normal."  Why would anyone care what other people think of them and their lives.  I only have to please one person and that is ME!

[KarenInWA]

I think what Goofy is trying to say is, she is not looking forward to being tied to a machine for 10 hrs a day, *every* day, and it's bothering her when healthy-kidney people say, "oh, it can't be that bad."  Going from basically "kidney freedom" to being tied to a machine for 10 hours a day is a HUGE adjustment for anyone, and being told that it's "no big deal" by people who don't have a clue is frustrating.  I understand what you're saying, Goofy.  I am still lucky enough to be in stage 4 of this wretched disease, and when I think of what my options are for the future, it depresses me.  I have been thinking about that too much lately.  I understand that PD gives one more options, but that whole "being a slave to the machine" thing for such a large period of the day EVERY day really bothers me.  How does one actually have a life?  Now I'm reading that some people combine the machine with manuals, and are able to actually go out and live somewhat of a normal life.  That makes me feel better.  I also really don't want the crashes and fluid and diet restrictions of HD, but if I do HD, I want to do it at home and not in center.  Of course, I live alone, and am pretty sure that I will never find a kind and loving partner to share life with, so I will have to fight tooth and nail to get the powers that be to let me do that w/o a partner.  These are my worries.  When I really stop and think about it, knowing that my life in the future is going to be nothing but working (I better still be able to work by then...) and doing dialysis, it really, really depresses me.

I know what you're going thru, Goofy, although you're way ahead of me.  I'm pulling for you.

 

KarenInWA

[Goofy]

Thanks Karen you hit the nail on the head!  You got the exact point I was trying to make. 

I guess I phrased my question wrong.  I was asking what do you say to people who say dialysis is not so bad regardless of which form of dialysis you do.  People tell me "oh my neighbor goes to a center and she only has to go three times a week.  And all she has to do is sit there, read, watch TV or "socialize".  Well then, if its so wonderful for your neighbor then I guess if it happened to you, you would look froward to all the "perks" from just having to sit around for 12- 15 hours a week.

All the people who say stuff like that, don't realize how you feel the remaining 4 days of the week.  All they is you coming and going.

Like Richard said, he prefers in center hemo, but for me personally, I would go out of my mind.  I'd rather much do it in my own home and that way I feel I have a little more control.  With all the goofy stories people tell as to what happens at some centers, I'd rather be in as much control of my health care then depending on others.

We also have some horrible winters in Chicago and lots of traffic problems all year round.  I don't want to have to leave work and panic that I may be late or how about the days when its so cold out, you just don't want to go?  Yes, I understand if you have to, you have to, but if you are lucky enough to be given a choice, I'd choose home care.

Calypso, I know you're not happy that you don't have a choice anymore but I also think about that for myself.  Things could change in an instant and I wouldn't have a choice.  Maybe I will end up on hemo one day but I sure hope not.  Trust me, I know what its all about.  My dad was on dialysis for 7 years and he had no choice.  It was hemo for him and that's all.  He lived with me so I saw first hand what I'm in for. 

I don't ever remember saying that I don't "appreciate" the fact that I can do PD but if I did, then I have misspoke.  I don't "want" to do it but its come to the point that there is no longer a "choice".  I tell people all the time how lucky I am to live in a time where dialysis is possible for everyone.  I tell them it wasn't that many years ago when their was either no dialysis or only the chosen ones got to be treated.

Then others in the forum say that they feel its not so bad, but they have already experienced it first hand.  I'm not quite there yet.  Maybe by next week I won't think its such a big deal either.  Besides that everyone has a different life style.  I need to work so I will need to be very scheduled so its not like I can hook up any time, I will need to certain things are specific time in order to do what I have to do.

I've already been thinking of different things to do to try and make it as convenient as possible but until I actually start, I have no idea of what PD is all about.

[Wallyz]

I've said- It is easy- want to come down and sit with me for 4 hours sometime? I cab jab a needle into your arm so you feel part of the gang!  Uhh- no.

I've also told people who try to be all upbeat about "Aren't you glad to have dialysis now, 30 years ago you would have died, blah blah" to either go donate a kidney or STFU.
But then, I've never played well with idiots.

[Hanify]

Also, I did haemo for 4 month before changing to PD.  And haemo didn't suit me.  So, it's much easier for me to say PD is way better as I have something worse (for me) to compare it to.  I don't know how I would feel about it if I hadn't done that first.  Do you know what I mean?

[girliekick]

I had no insurance until I started D. So I would space my neph visits as far apart as possible, After each one, I would come home and sleep. I could not function for the rest of the day, bc I would be forced to think about my future. I truely couldnt grasp what it meant, and each time I thought maybe this one time I will go and my no will be the same, and the doc will give me some hope. But they didnt, it got worse each time. And, Goofy, I had no concept of dialysis other than people say "you feel so much better once you start"

I agree w you 100%, You just dont know until youve been there.

I wanted to do hemo, because I was afraid to be in control of my treatments. I thought I would mess up and make things worse, and daily routines are not my strong suit, and the tube. I made the choice that was best for me, or so I thought.

I know that was off topic, Have you read the book Bright-Sided? (I have not, believe I will be getting it for christmas) Its not mushy despite how it sounds. Its about not being delusional about ur situation no matter what it is. Its about how as a country we have a societal problem of trying to look on the bright side all the time, and thats not always so good.
Anyway I hope to read it soon, and it sounds like something you could really appreciate.

(I am not trying to be contraversial or offend anyone)
Girl

[sico]

Also, I did haemo for 4 month before changing to PD.  And haemo didn't suit me.  So, it's much easier for me to say PD is way better as I have something worse (for me) to compare it to.  I don't know how I would feel about it if I hadn't done that first.  Do you know what I mean?

Same here. But i was only using a cath for HD. I usually tell people it could be worse, at least i dont have to stick myself.

Goofy, i find the worse thing about PD is just that it's daily. If i go out at night it will be on my mind, what time i will plug in and get off.
But the positives far outweigh the negatives.
It's hard for people to understand and i don't think anybody does unless it's happened to them or a close family member.
I have not actually had anyone tell me "it can't be that bad". Not sure how i'd respond.

[RichardMEL]

Actually just to clarify slightly I didn't write that I preferred hemo. I actually wrote that I *would* prefer nightly nocturnal (either PD or hemo) because for me it would give ease of fluid and diet restrictions and *more* dialysis which is much better overall than in center 3x/week for 5 hours. That's just me though everyone's different.. and I may have a bit of a "the grass is always greener on the other side" attitude because I *can't* do those other forms of dialysis it's perhaps a bit of envy. Each modality has its pros and cons obviously.

Karen and Goofy - I think you're looking at things like this the wrong way around (I don't mean that to sound rude of offensive.. it's just an opinion). I mean look at people on our board like Zach, and Kitkatz and Bill - and countless others who all live rewarding lives doing what they WANT to do - do you seem these guys letting dialysis rule their lives? NO WAY IN HELL!! They run their lives and fit dialysis in until it becomes second nature. Once you get in a routine with whatever mode you use you'll find you CAN do stuff, live and enjoy yourself - that it's not all over - and I think that's a fear many people have (and understandable).

I'm very much a positives man and I try to always look for the up side to every situation like this. Do I think dialysis sucks and is a pain in the arm? You bet I do. However, it is not the be all and end all of my life. I have all my interests I continue to follow like being ordered about by my cat, my (horrible) football team, flirting with the lovlies of IHD  even my job.... and I can do all those. Yes, some other things I love (international travel for example) are on hold, but I'll get back there. For *me* dialysis is keeping me going till that perfect match arrives, and then I can party on with my nurses in Hong Kong, and visit y'all in Vegas! I call those positives 

Is it easy? no it isn't.. but it doesn't have to be a trauma that takes over everything. Hopefully once stable on dialysis very little will change from that point of view and the focus can move back to lifestyle issues and working with them, rather than against them.

I guess I'm trying to say it is what you make of it. I am positive for Goofy, and Karen, and everyone else approaching dialysis at any time will be OK once settled in.

And Wallyz is right - when you invite them to spend 4+ hours in one of those chairs, or stick a 15 guage needle in their arm they suddenly have somewhere else to be urgently 

In a way they do have a point - unlike some other conditions we DO at least have dialysis to keep us going. There are other serious illnesses that you simply do not have that kind of mechinism to keep you going. I'm glad I do so I'm still here to bug everyone...

[*kana*]

I have learned months ago that the best way to avoid stupid comments from people that dont know what you are going through is to not talk about your problems.  I know we all need to vent about our struggles, but kidney healthy people just don't understand. 

I have a coworker whom thinks her life is a total disaster and I just laugh and tell her when she needs to talk it out, I am there to listen to her awful healthy life.  LOL

[Jie]

I agree that the bes way to avoid such comments is not to talk about one's problems.  The 8 or 9 hr cycler is basically during sleep, and the maximum time I need besides sleep is about 40 minutes a day, setting up and cleaning. So it is not the end of world.  One can have a life, can drink in a bar at night and can do a lot of things. We don't need to start the machine the same time each night. Some nights, it can start at 12 am, and other nights, it can start at 10 p.m. We just need to do the enough hours each day. I think the first thing is to get over the mental hurtle. As long as we are mentally ready, PD's life is a livable life.

[Hanify]

Thinking of you today Goofy.  You can do it!!!

[jbeany]

My smart alec response was usually "Give me both your kidneys and you can go instead of me!"  Don't get too angry at them, Goofy.  They are clueless.  There is absolutely nothing thrilling or good about losing your health.  Most of us do reach a point where we have accepted it, and learned to deal.  You'll get there too.  I think we actually go thru the stages of grief, mourning the loss of our regular life.  Denial and anger are normal parts of that.

[*kana*]

Another way that I deal with what I am going through is to understand that there is always someone else dealing with something worse.  I am blessed to have kidney failure, yes, I said blessed..... and not some other organ like heart or liver.  Gallbladder would be much better if I had that choice, but I am stuck with what I am given.   My friends friend is in the ICU right now dealing with liver failure and will die soon.  Nobody knows their own fate, we dialysis patients think we know, but nobody knows.  I've seen healthy active adults just fall over dead and terminal patients live for years.   So, don't let what others say bother you.

I'm sure we have all complained about having to get eye glasses, where a blind man would think we were lucky.
I'm sure we all complained about getting up to that annoying alarm clock, but a deaf man would think we were lucky to hear it.
I'm sure we all have complained about having to walk that extra block, but a crippled man would think we were lucky.
I used to think sneezing and peeing my pants was terrible, but I have learned now that not peeing is worse.
My mother used to complain about her gray hair until Chemo made it all fall out.

So, I guess my point is we never see that things can be worse until they are.  We take so much for granted right along with people with healthy bodies.

Hang in there!     

[sico]

I have a coworker whom thinks her life is a total disaster and I just laugh and tell her when she needs to talk it out, I am there to listen to her awful healthy life.  LOL

Another way that I deal with what I am going through is to understand that there is always someone else dealing with something worse.  I am blessed to have kidney failure, yes, I said blessed..... and not some other organ like heart or liver.  Gallbladder would be much better if I had that choice, but I am stuck with what I am given.   My friends friend is in the ICU right now dealing with liver failure and will die soon.  Nobody knows their own fate, we dialysis patients think we know, but nobody knows.  I've seen healthy active adults just fall over dead and terminal patients live for years.   So, don't let what others say bother you.

I'm sure we have all complained about having to get eye glasses, where a blind man would think we were lucky.
I'm sure we all complained about getting up to that annoying alarm clock, but a deaf man would think we were lucky to hear it.
I'm sure we all have complained about having to walk that extra block, but a crippled man would think we were lucky.
I used to think sneezing and peeing my pants was terrible, but I have learned now that not peeing is worse.
My mother used to complain about her gray hair until Chemo made it all fall out.

So, I guess my point is we never see that things can be worse until they are.  We take so much for granted right along with people with healthy bodies.

Hang in there!     

True, i think we're lucky to have dialysis. I know without it i'd be six feet under.

[Savemeimdtba]

Well, out LOUD it sounds easy you sleep while a machine does the work - but they'll never understand all it entails.  But, it'll get easier.. I promise and soon you won't even notice it!  It's just habit and it doesn't effect my day or my plans.  It takes a little time but just focus on that future where it's going to be second nature to you.  Not having been through hemo (lucky you!), you can't fully grasp how good you have it!  Be thankful Have the bad days, it's expected, but also learn to enjoy those good ones.