Dialysis Today

[cariad]

Wow, did this get out of hand.

Im not saying that those who do in-center are failures or stupid or anything like that. 

When you say that they can just "lay there" and one of the bonuses is that they won't have to "learn how to cannulate or what the numbers mean" you are implying laziness, and yes, stupidity. We have a few members who are or were in-centre, cannulate themselves, know everything about these machines and what the numbers mean, and lead full, active lives. It is offensive to suggest that they must not want to learn or be proactive in their care and that they can "still live" but should not expect more than that bare level of existing. Aren't we about helping people get the best quality of life they can given their individual circumstances?

I understand what DD is saying and I agree that providing education and information is the goal of IHD and that should never be discouraged. I can easily imagine that she was a force to be reckoned with during her short time in a clinic.

However, I think Jeannea had an excellent point - take into account what is being asked. I think mentioning home dialysis is almost always appropriate, but as this discussion gets more heated it is starting to read as mean-spirited. I took Jeannea's post as a request to think about how you come off when you reply to a question about in-centre dialysis and the answer simply "don't do in-centre dialysis". I did not take it as chastising anyone in particular, accusing anyone of anything, more just an observation/frustration that she thought would be worth bringing to everyone's attention. I have to say that if someone had a problem with in-centre dialysis and my response was "get a live-donor kidney transplant" ('cause, hey, worked for me) then I imagine the outcry would be swift and fierce. Personally, I try to be careful about when/if I bring up my own experiences, and I know I've made mistakes on here. It's all part of the learning process at IHD - not only learning about renal replacement therapy but learning how to be helpful and supportive with people who have not been as lucky as I've been.

There has been excellent information about how to address in-centre problems - some of Meinuk's posts come to mind. While I hope to never need this information, one never knows and I'm grateful it's on here.

[MooseMom]

I must be feeling super sensitive or something today because this thread has made me cry.

I am appalled at the very notion that anyone would think that someone else was bragging about their success on one particular modality.

What has always concerned me was the idea of leaving others behind.  When I was doing my own research into which modality might be best for me (and I spend literally YEARS learning and planning), I decided that home hemo might be best for me.  I don't know why, but what really bothered me the most was the image of all of those dialysis patients "left behind", those who had to stay in-center for whatever reason, those who had no choices, those who might be doomed to poor treatment because they were stuck in-clinic.

Someone asked me once after I received a transplant if I felt guilty that another person had lost their own life and I had benefitted from that.  No, I didn't feel guilty because of that, but I did feel guilt that I got a lucky break while others will never even get the opportunity to just get on the wait list.  I felt, and still feel, bad for all of those who get "left behind."

The truth is that the vast majority of dialysis patients get their treatments in-center.  We should all be advocating to make sure they get the best treatment possible from techs, nurses, nephs and CEOs.  In-center D is the default position, and none of us know when we might require in-center D.  PD might stop working for some of us.  Home hemo might not be possible for a short while because of an illness or other problem.  Maybe your care-partner has an accident, or if YOU are a care partner and something happens that requires your loved one to spend some time in center, then I'm sure you'd want to make sure that in-center D is truly a safe alternative.

In our efforts to make D bearable, we have to make sure we leave NO ONE behind lest one day WE are the ones left forgotten by the wayside.

I hope I've made sense.  I'm feeling a bit incoherent today.

[Riki]

But MooseMom, I don't feel "left behind" because I do in centre dialysis.  I'm in no way passive in my treatment.  Nothing is done without my say so.  I decide where the needles go (I have 3 available sites and one more developing), I decide how much fluid is taken off.  If I don't feel well halfway through the treatment, I decide if I should come off and go home.  I watch the machine, and I can alert the nurses if there's a problem with the pressures before the alarm goes off.  I don't in any way feel that I get poor treatment because in centre hemo is all that is available to me.  Would I try other modalities if they were available to me? Sure, if I thought they'd be beneficial, but the notion that I or others on in centre hemo are lazy or are getting inferior treatment simply because we are in centre is offensive.

[MooseMom]

Riki, I'm REALLY glad you are such a good self-advocate and have so much control over your treatments.  You are the poster child for good quality in-center hemo.

I in no way think think that anyone who does in-center is "lazy".  That never occurred to me!  But I DO suspect that a lot, if not most, of in-center patients are the sicker patients and may not be well enough to watch for trouble or hear alarms.  These people are so very vulnerable, and it is THOSE people that I feel may be "left behind". 

I guess I was speaking in general terms, and I see where that can be offensive to a patient like yourself.  I apologize for that!

I watched my mom on dialysis for 5 years, and she never "took control" over her treatments.  She was offered nocturnal hemo at her center (Davita was starting a new program, and the new head of that dept was looking to recruit suitable patients), but the head nurse said "no" to her.  I tried to get my mom to find out why, but she never did.  I think her heart was weakened by conventional dialysis, and I am left wondering if she had been allowed nocturnal, then maybe she'd still be alive.  She wasn't lazy, but she WAS passive.  But I think she also felt overwhelmed and frightened and depressed, and when you are in that sort of state, it is probably much easier to let someone else take the reigns.

It's really reassuring to hear from in-center patients like you who are happy with their treatment!  Thanks so much for reminding us that in-center hemo can be a suitable modality, especially when the patient is allowed so much control!

[Riki]

In Nova Scotia and Prince Edward Island, there are only 3 options for people with kidney failure; PD, in centre hemo, or transplant.  At lot do hemo first, then go to PD, and most of the newer patients can't get transplants simply because there's a backlog of people waiting for workups to get on the list.  There is, however, a handful of people, like myself, who only have one choice.  We're not all sick, in fact, most of us are quite healthy and do very well on hemo.  A few even work full time.  About half of us are under 60.  Some put their own needles in, some do their own charting.  There is one girl who has a line and will not let any of the nurses do any of the work.  There are a few who are more ill, but not many.  Maybe that's something that's unique to Charlottetown, I don't know, but the concept of only the sickest patients being on in centre hemo doesn't make a whole lot of sense to me

[boswife]

I may be wrong on this but on this quote  "They won't have to worry about storage or learn how to cannulate or what the numbers mean.  They can just lay there and let the Professionals take care of them." I saw it as a lovely thing...Not as saying something bad AT ALL! .  I think it's on of those things as to 'where' you put the empfasis on.  I heard it completly different from the rest of ya here and though i can see where your commen from, I dont think it was ment at all like that.  If it were me and not hubby,, i honestly am pretty sure i'd  Let the "Professionals" take care of me with no qualms.  It doesnt mean lazy or anything, Just 'letting' someone else take care of me... Sooo, just another take on it, but i really am pretty dang sure it was ment with no ill intentions     

[MooseMom]

In Nova Scotia and Prince Edward Island, there are only 3 options for people with kidney failure; PD, in centre hemo, or transplant.  At lot do hemo first, then go to PD, and most of the newer patients can't get transplants simply because there's a backlog of people waiting for workups to get on the list.  There is, however, a handful of people, like myself, who only have one choice.  We're not all sick, in fact, most of us are quite healthy and do very well on hemo.  A few even work full time.  About half of us are under 60.  Some put their own needles in, some do their own charting.  There is one girl who has a line and will not let any of the nurses do any of the work.  There are a few who are more ill, but not many.  Maybe that's something that's unique to Charlottetown, I don't know, but the concept of only the sickest patients being on in centre hemo doesn't make a whole lot of sense to me

Riki, your post sounds a lot like what monrein has said in the past.  I may have gotten the wrong end of the stick, but I've somehow gotten the impression that self-care is a more common phenomenon than it is here in the States.

Anyway, I get your point.  I don't have enough experience in this to make any more comments.

[Riki]

But just because we're in centre doesn't mean we just lay there and do nothing.  Perhaps it's unique to my centre, I don't know, but the nurses push the patients to have some kind of active role, even if it's simply just ok-ing the amounts to take off with the treatment.  Some of us, like myself, have used this site and others to educate ourselves, so we are more knowledgeable in how things work, and are a little more demanding.  I don't believe anyone doesn't need to learn what the numbers mean, everybody needs to know so that they can give proper direction, and I don't know anyone who's been in centre long term here who doesn't at least have a rudimentary understanding in order to give the nurses proper direction.

This is why I don't like it being said that those in centre don't need to learn what everything means, because they do need to learn these things

[boswife]

Sweet dear Riki, i hope you dont now think that 'i' ment anything like that either    Just because i would be comfortable letting  them do the work, doesnt mean that i (like you) would just sit and go blindly into it.  I completly see that you, and others (ME too!!! )  are here to learn cause thats how we opperate, but some im sure are helpless to their situations and need advocacy which i wish there was more of in the centers.  I know this isnt REALLY related, but ............ just yesterday, hubby had to go into ER for a drug reaction.  While in there, they started to hook him up to an IV.  My eyes poped out and i quietly asked what it was for.  They said just what they do.  I asked if they understood hes a dialysis patient, and the nurse said yes, but the dr ordered it.  ALRIGHTY THEN... so i asked politly if she could remind the dr of his 'condition' and see if there was a medical reason to go ahead anyway.  Well, nope, there wasnt and i would have had a crapload of fluid to pull off.  So, what im saying is, hubby just was gonna 'take it', as that is how 'he' is, but me being the one who learns (IHD  ) knew to put a stop to it.  We all do what we can, thats how we roll here 

[Riki]

I think that my experience might be more unique than most, because of how young I was when I started.  I was taught to question whenever I thought something seemed wonky, so it's second nature to me now.  Fortunately most don't have the experience that I did, and they don't need to start dialysis until later in life and they (especially those 70+) don't question doctors because they believe them to be all knowing.

I actually remember telling a female doctor to quit lecturing me because I was learning about kidney disease while she was still chasing boys on the playground.  She was only a couple of years older than me. *L*

[cariad]

This is why I don't like it being said that those in centre don't need to learn what everything means, because they do need to learn these things

Yes, of course!!! Everyone starts in-centre, we ALL need to know what is going on and how to handle that environment. Even in my four days of dialysis I was able to stop some of the bad reactions from happening because I knew what was going on and why. I had to deal with a little control-freak nephrologist who was trying to assert himself amongst some very big names in nephrology. No matter how many times he was knocked down by smarter, more experienced doctors, he always seemed to want to come back and prove that he knew better than they did. And so it was that he made a decision to set my machine to take off a litre of fluid that was not there. Being told "do home hemo" would not have helped me in the least. And that was the original point that was being made - not everyone can or wants to do home hemo, that is their call, so what can we do for all of those people? I do think the word "brag" was not the most accurate because I did not think anyone was bragging per se. It does seem like the word 'brag' put people on the defensive, and I can understand that. I also think with some of these discussions, a member could get the idea that if they don't do home hemo than life is hopeless and they cannot expect to be able to live fully and we do have members who have proved that this notion is utterly false.

At some point the tone changed in this discussion from explaining one's reasoning to "I'll brag if I want to brag". Yeah, you can certainly take that position, no one can stop you, but why would you want to come on a support group and ignore other members' concerns about tone? This was a thread about in-centre problems, do we have any in-centre solutions? If you do home hemo and you have a problem with your supplies or an issue with the machine, would you find it helpful for someone to respond "this is why I do dialysis in a unit - so I don't have to worry about that nonsense". I imagine that would kick off the same sort of discussion that we find here - who made the better choice, and I don't think that's constructive at all. You cannot really compare choices made by people in such diverse circumstances.

[monrein]

I think there is a difference in how patient involvement is perceived in Canada, perhaps due to the way that our system is funded.  I was strongly encouraged to do home hemo way way back in the day because I could and also because it saves the system money.  I was  given info about PD but wasn't pushed to do it even tho that also would have saved money.  I have dailyzed in hospital in Ontario and Nova Scotia, done home hemo in both provinces and most recently was in a self-care clinic in Toronto.  I was also switched from 3 times a week to 5 times a week simply because I asked my neph about that possibility since I wasn't feeling very well.  There are many patients who are not able or not interested in being more involved in their treatment and I think we need to encourage and educate them to take more active roles BUT we must understand that the psychological impact of any chronic illness sometimes makes this difficult.  Different people respond differently and good care must necessarily take an individualized approach to treatment modalities and to patient involvement.  The beauty of sharing our experiences is that we can each try things on and think about whether or not we might benefit from something different.  The key however is often whether something is available where we live.  Home hemo could be a catastrophe if a patient is pushed to it just as in-centre could be emprisoning if it were the one and only option.

[Simon Dog]

I don't in any way feel that I get poor treatment because in centre hemo is all that is available to me.

Here in the US, the standard for in-center in 3X/week.   Numerous studies have shown that this is a serious compromise in quality of care, and results in greater mortality, than every other day treatment.    So, I wouldn't say in-center is "poor", but it is reasonable to say that the goal in-center strives for is "adequate" rather than "excellent".

[nholleger]

Good Afternoon,

I am a new member here and I have not yet started dialysis.  I am scheduled for surgery on Monday to have my PD port placed.  Here is a new members thoughts on the information in this post.  I agree that those of us who are new need to be told the good, bad and ugly of all forms of dialysis.  Reson:  because most of us are going on information provided to us by our health care providers, who I might add, have never been on dialysis themselves.

Point - My hubby is squimish and blood is NOT and option for him so home hemo is NOT an option.  Well my health care provider tells me I could do either PD or in-center.  What does that mean?  So I tried to research these and you get hard facts....not experiences.  So I come here.  In my travels I decided my life will suck because in-center HEMO seems like my only choice because I have animals in my home, I don't think I can live with a PD cath in my belly (lifestyle). 


Then I run across some new and old posts here that give me MUCH more information than the professionals give.  Now I know that the PD cath does not need to be in my belly.  My is going to be in my chest.  I learn that MANY have animals in thier homes. 

Just from my point of view.  Those of you who are feeling like you are being asked not to "brag" I feel just the opposite.  If you had not I would have never known that I did actually have PD options.  AND THAT MY FRIENDS CHANGED MY LIFE.  I HAD DECIDED IF I NEEDED TO SIT IN A CHAIR IN A CENTER 3 DAYS A WEEK FOR 4-5 HOURS FOR THE REST OF MY LIFE (I AM 45) I WOULD RATHER DIE!  And I already spoke to my family and my doctor about just that.  Whoever you are:  THANK YOU.

[MooseMom]

nholleger, I've been a member of IHD for quite some time (as you can probably tell by the enormous amount of posts I've tallied!), but I know next to nothing about PD.  I'm fascinated by the fact that you, a relative newbie, have taught me that a PD cath does not have to be inserted into the belly.  Yours is going to be in your chest?  I've never heard of that!  Can you tell me more about how that works?

I'm really glad that IHD has been able to help you make decisions about your treatment!

[cariad]

Good Afternoon,

I am a new member here and I have not yet started dialysis.  I am scheduled for surgery on Monday to have my PD port placed.  Here is a new members thoughts on the information in this post.  I agree that those of us who are new need to be told the good, bad and ugly of all forms of dialysis.  Reson:  because most of us are going on information provided to us by our health care providers, who I might add, have never been on dialysis themselves.

Point - My hubby is squimish and blood is NOT and option for him so home hemo is NOT an option.  Well my health care provider tells me I could do either PD or in-center.  What does that mean?  So I tried to research these and you get hard facts....not experiences.  So I come here.  In my travels I decided my life will suck because in-center HEMO seems like my only choice because I have animals in my home, I don't think I can live with a PD cath in my belly (lifestyle). 


Then I run across some new and old posts here that give me MUCH more information than the professionals give.  Now I know that the PD cath does not need to be in my belly.  My is going to be in my chest.  I learn that MANY have animals in thier homes. 

Just from my point of view.  Those of you who are feeling like you are being asked not to "brag" I feel just the opposite.  If you had not I would have never known that I did actually have PD options.  AND THAT MY FRIENDS CHANGED MY LIFE.  I HAD DECIDED IF I NEEDED TO SIT IN A CHAIR IN A CENTER 3 DAYS A WEEK FOR 4-5 HOURS FOR THE REST OF MY LIFE (I AM 45) I WOULD RATHER DIE!  And I already spoke to my family and my doctor about just that.  Whoever you are:  THANK YOU.

First, I am delighted that you have new hope and that you feel that certain IHD members have contributed so much.

Of course everyone should have as much information as possible, and when people find a modality that works for them it is wonderful when they share that with everyone else, but the point is that that information does not necessarily belong in a thread about in-center problems.

[nholleger]

Hi,

As you read from my earlier post I was feeling REALLY desprate.  I joined ihatedialysis because I needed to know if all things I learned from my health care professionals were my only options.  I am 45 and very active.  I work to jobs - both very physical.  I am so energetic (until this ESRD) that I don't even sit down to watch TV.  I CANNOT ever see myself sitting in a chair for several hours - several days a week.  I think I would have some serious depression over that.  So, I asked about PDTI was immediately told that the cath went in my belly and my physical jobs would have to altered AND no pool and no TUB.  WHAT?  I am a water girl.  Then the dogs.  I have two small dogs who are litter box trained. (BIG NO) 

The post here were what had me looking into PD further.  Many had animals.  Some had cats with litter boxes.  So I search on.  Low and behold I find a "bath tub" cath posted somewhere in my travels.  WOW!  I research it and not only does it allow me to a bath tub but also in my pool because the cath is above my water line!  SERIOUSLY?  Why didn't my doctor tell me about this?  I as her.....she never heard of it!  So I search on.  I can't find a surgeon to do it!  THEN.....I call large hospital within 3 hours of my home. AND what do I find?  A surgeon who specializes in what they call a "missouri" cath. 

I meet with the dialysis clinic and the nurses there are excited to learn something new.  My doctor is young and didnot want anything to do with it.  So I now have a different doctor (not so young) who said "lets make it happen".  So I schedule surgery in a hospital 2 hours from home to get this cath. 

I will let you know how it goes!

[Riki]

I don't in any way feel that I get poor treatment because in centre hemo is all that is available to me.

Here in the US, the standard for in-center in 3X/week.   Numerous studies have shown that this is a serious compromise in quality of care, and results in greater mortality, than every other day treatment.    So, I wouldn't say in-center is "poor", but it is reasonable to say that the goal in-center strives for is "adequate" rather than "excellent".

yes, I agree with that, and to be honest, if I could choose another modality, I would.  My problem was that the original poster had a valid question about a problem with staff in her unit.  The answer that was given to her was to switch to home hemo.  It may help her in the long run, but it wasn't an answer to her immediate problem.

If it had've been me asking the question, and the answer I got was to switch to home hemo, I would have been a bit mad, because, as I've said, it's not a modality offered where I live.  As it is, I do get good dialysis in the 3x per week model.  My clearances are always 75% or higher, my levels are all in normal range, and not just dialysis targets, NORMAL, except for Creatnine, of course.  I also feel like a human being most of the time.  I'm doing better now than I was when I was on PD, so even if could, I don't know if I'd change modalities, even if I could, though I am curious about how home hemo works these days.

[MooseMom]

Oh oh oh, nholleger, I just did some research on the "Missouri" cath over on HomeDialysis.org; I had no idea!  I learned something today.  And you taught your docs a thing or two, also!  Just think...now you've educated your doc since she had never heard of it; consider how many of her patients she can now tell about the "missouri" cath, all because of YOUR research!  Well done!  This is just one more option for those who are not happy with in-center D but have been squeamish about PD.

[MooseMom]

My problem was that the original poster had a valid question about a problem with staff in her unit.  The answer that was given to her was to switch to home hemo.  It may help her in the long run, but it wasn't an answer to her immediate problem.

If it had've been me asking the question, and the answer I got was to switch to home hemo, I would have been a bit mad, because, as I've said, it's not a modality offered where I live. 

You are right. 

You know how discussions often sorta veer off course!

Switching modalities can be easier said than done for a lot of people

[Joe]

Nadine, good on you for reading some of the older posts on this site. I have 3 dogs and a cat and do PD daily. I just make sure they are not in the room when I am connecting/disconnecting. And while they don't sleep in the same bed I do, they are in the same room at night while I'm connected to my cycler. That's worked for a year and a half (knock on wood), and I haven't had any problems.

As for catheter placement, you can certainly go with a pre-sternum placement if you wish. They just add an extension to the catheter to get the end down into your peritoneum. Mine is just below my belt line. I find it's not an issue there and I can easily tuck it into a PD belt to immobilize it. Best of luck to you on this journey, and let us know how you are doing.

[nholleger]

Thanks everyone!  One step at a time......I will reach a goal.  Not really how I pictured my life, but I once read that a person's character does not change over their lifetime. 

Paraphrase:  he stated something like he knows people who are often miserable in life and are miserable on D.  But he also knows some upbeat people who continue to be upbeat even after loosing legs, etc.  All in how you want to look at it. 

I do believe we will all have moments where you say "really?, why me" but we move forward because we have to.  Good luck all. 

PS.  Belive me I was not feeling that open minded when I sent my 8th person for tissue typing to the transplant center and STILL NO MATCH!

[MaryD]

they don't need to start dialysis until later in life and they (especially those 70+) don't question doctors because they believe them to be all knowing.

Watch it!!  Here's a 70+ who puts her doctors through the wringer with curly questions. I think any generalisation is possibly going to cause offense and is best ignored if it doesn't 'match' you.

Besides I remember feeding my (doctor) sister caterpillars, and almost hanging her while practising circus tricks under the house.  She volunteered!  I know doctors don't know everything.  They're fallible humans just like the rest of us.  Supervision is the best course of action.

[lmunchkin]

I may be wrong on this but on this quote  "They won't have to worry about storage or learn how to cannulate or what the numbers mean.  They can just lay there and let the Professionals take care of them." I saw it as a lovely thing...Not as saying something bad AT ALL! .  I think it's on of those things as to 'where' you put the empfasis on.  I heard it completly different from the rest of ya here and though i can see where your commen from, I dont think it was ment at all like that.  If it were me and not hubby,, i honestly am pretty sure i'd  Let the "Professionals" take care of me with no qualms.  It doesnt mean lazy or anything, Just 'letting' someone else take care of me... Sooo, just another take on it, but i really am pretty dang sure it was ment with no ill intentions     

THANK YOU BOSWIFE.  You got exactly what I was trying to say & my intentions were not mean spirited at all, but aparently some read it a different way.


Sorry to those who were "offended" by what I said.  And maybe I should clarify it more by just saying, when John was in-center over 2/3 of the people there were zombies including my husband.  They all just sat there sleeping.  I of course, knew nothing cause the clinic he went to, did not inform me of anything. I felt left out and very unenvolved and very lost as to why. I knew a little about dialysis from doing PD at home.  Never knew Home dialysis was an option.  When I spoke to his neph about how the clinic would not let me in on anything they were doing to him and I wanted to switch him to another center, she suggested I look into home hemo.  I was all for it.  Never knew it was available, cause quite frankly, we had not yet found IHD.

NxStage training is when we were told about IHD.  I love this site, and if I offened anyone, then please except my apology, cause that was never my intention! I was just trying to make a point towards our experiences.

God Bless,
lmunchkin

[rocker]

[..]

I meet with the dialysis clinic and the nurses there are excited to learn something new.  My doctor is young and didnot want anything to do with it.  So I now have a different doctor (not so young) who said "lets make it happen".  So I schedule surgery in a hospital 2 hours from home to get this cath. 

I will let you know how it goes!

You, my friend, totally rock.

A standing ovation for the lady here. 

 - rocker