Are you happy with your treatments?

[MooseMom]

There has been research for a long time now, and new research for those who had forgotten/ignored the old research, that tells us that more dialysis is better dialysis.  It's just that simple.  That's why nocturnal dialysis gives as good clinical results as cadaveric transplant.  Good dialysis is possible, but for profit/financial/political reasons, the three times a week in-center modality is what we see most often here in the US (and probably everywhere else, too).

This idea of longer, slower and more frequent dialysis...when you think about it...is going to more closely mimic what our native kidneys used to do every second of every day, so it makes sense that when you try to cram all of that "renal function" into preprogrammed time slots that suit a clinic but not your body, the result is not going to be all that wonderful.

The downside is that this means more time dialyzing.  Who wants to sit in that chair for longer than you have to?  I remember my mom rejoicing when her neph decided she could shave 15 minutes off her sessions.  I was really happy for her because she was ecstatic, but looking back, I have come to realize that they never, over the five years she was on D, really controlled her fluid, so LESS time on dialysis was probably the LAST thing she needed.

So, that means that currently in the US, to get more dialysis, you need to either do it at home or do it incenter nocturnally (although this option is rare, I think).  I don't know if you can get more dialysis in clinic during day sessions.  Is it possible, if you wanted, to get dialysis every other day and avoid that two day layover?  Home dialysis is great for some but it is not possible for everyone, and for those who would benefit from more dialysis but can't do home hemo or PD, how can they get more dialysis in the clinic?

So my questions are...do you believe that MORE dialysis...longer, slower and more frequent...is better than the current 3xweek in center template?  If you do believe this, would you ask for every other day dialysis in center if you could get it?  Or do you feel that your current standard incenter plan is good enough?

I read so much from all of you about how you feel washed out after D and suffer from low BP and from the effects of rapid fluid removal, etc...indeed, there is a thread here about it right now.  For some of you, this has been going on for years.  Dialysis is not easy in any form or fashion, but bad dialysis or inadequate dialysis doesn't have to be the norm like it is now.  It feels like we are generally pushed into a one-size fits all treatment because this is what suits the dialysis care providers.  But then we get back to the "patient burden" issue.  Would patients actually WANT/ASK for MORE dialysis if they were told that it would make them feel much better?  Would you?  Would you trade better health for, say, an extra hour on D every other day?  How many of you have no choice other than the three x week incenter regime?  Would you like more choices?  Does anyone at your clinic tell you about your other choices?

I have feared dialysis for a long time, and when I sit down and try to define that fear, what scares me is the idea that the treatment that is supposed to save my life will in and of itself gradually disable me.  Whenever I hear about people who do well on dialysis, it seems that it is because they are dialyzing MORE, not less, and that's when I think it may be possible to feel good on D.  But how many of you get the option of dialyzing MORE?

Thanks so much for your replies.  They will help me make some choices.  

[Tracy]

Hi, I am hooked on for 3.5 hours at the incenter hd.  I could ask for more, because they stay open late (not for nocturnal though).  We are told at the beginning about all kinds of D, especially at home.  I think they'd rather us do D at home.  I can't or rather that is not an option for me.

I know several of the men at my center are  hooked on for 5 hours.  So, I really could ask for more.  Each month, we get a "report card" from the dietitian.  It gives us all our levels of things for last month and the current month.  They say that you should have clearance of >70.  I am at 82, which is great clearance supposedly.  So, I am thinking now (after reading your post) why would I want to ask for more.  I don't always feel bad (maybe 1 out of 3 times I do), so I just don't know if sitting in that chair for 30 more minutes or an hour more, is worth it to me.  Honestly....I think I could do it if I REALLY needed to, but since no one has said anything negative, I am thinking 3.5 is enough for me.

That is just my personal experience.  You do have a great point tho!!!

Tracy 

[rocker]

Well, I have gone (slowly, and clearing it with the doctors) from 20l treatments to 30l  for hubby at home, which has added something over an hour to his treatments (5-6 days a week).  I'd love to drop the speed and go longer, but I cannot get DaVita to authorize a heparin pump for him.  His phosphorus runs in the mid to high 5s, and I'm sure a bit longer on treatment would help.  But I can't run him longer due to clotting.

A few weeks ago, he was on anti-coagulants briefly.  He came out of the hospital quite heavy, and the first treatment at home I was able to run him nearly five hours and take almost 4l of fluid off.  His phosphorus the next day was 3.9. 

But hep pumps are not "standard" for home treatment, and the clinic refuses to do anything not cleared by the mothership.

  - rocker

[paul.karen]

Im happy with my treatment.  But I HATE DIALYSIS

Im hooked up for 9 hours a night.  Do four exchanges of 2300ml.  I dwell for 1:30 min. in between exchanges. It gets kinda old but the benefits far outweigh my option of not doing dialysis.  If not for dialysis well i would be dead by now.

I feel in the future i may have to switch to hemo.  If/when that time comes i think i will do it in center.  I like my clinic and my nurses.  If i feel im not getting good enough dialysis i would switch to NxStage.

MM i know your still scared.  But it isnt that bad.  Maybe bad days here and there but :-)
Even people not on dialysis have bad days...  Think positive  (even though it sucks we make the best of it).

[MooseMom]

Hi, I am hooked on for 3.5 hours at the incenter hd.  I could ask for more, because they stay open late (not for nocturnal though).  We are told at the beginning about all kinds of D, especially at home.  I think they'd rather us do D at home.  I can't or rather that is not an option for me.

  So, I am thinking now (after reading your post) why would I want to ask for more.  I don't always feel bad (maybe 1 out of 3 times I do), so I just don't know if sitting in that chair for 30 more minutes or an hour more, is worth it to me.  Honestly....I think I could do it if I REALLY needed to, but since no one has said anything negative, I am thinking 3.5 is enough for me.

That is just my personal experience.  You do have a great point tho!!!

Tracy 

I'm glad you were told about all of your options.  That would be really important.  And if you are feeling OK and are happy with the amount of treatment you are getting and are satisfied with your results, then I can see why you wouldn't feel the need for longer treatments.  That's the "art" of medicine, I guess...finding that fine line that determines a good patient outcome AND quality of life.  Thanks for your reply.

@rocker, I've heard other people talk about the problem of getting a heparin pump for home hemo.  My own clinic has said the same thing, but it is an independently owned clinic and I am hoping if I need a hep pump in the future, I can talk someone into believing I'm not too stupid to learn how to use it.

[MooseMom]

Im happy with my treatment.  But I HATE DIALYSIS

Im hooked up for 9 hours a night.  Do four exchanges of 2300ml.  I dwell for 1:30 min. in between exchanges. It gets kinda old but the benefits far outweigh my option of not doing dialysis.  If not for dialysis well i would be dead by now.

I feel in the future i may have to switch to hemo.  If/when that time comes i think i will do it in center.  I like my clinic and my nurses.  If i feel im not getting good enough dialysis i would switch to NxStage.

MM i know your still scared.  But it isnt that bad.  Maybe bad days here and there but :-)
Even people not on dialysis have bad days...  Think positive  (even though it sucks we make the best of it).

Yep, I know that dialysis doesn't have to be that bad, but it could be worse if you are not getting the best dialysis possible.  And it looks like you may be reviewing your own options, and that's sort of the point of my questions.  I'm just wondering about patients' "quest" for the best dialysis they can get.  If you decide to switch to hemo, would your clinic/neph be supportive of your choice?  I'm glad you like your clinic!  It's always good to hear from people who actually LIKE their clinic!

Thanks for that!

[paul.karen]

Im happy with my treatment.  But I HATE DIALYSIS

Im hooked up for 9 hours a night.  Do four exchanges of 2300ml.  I dwell for 1:30 min. in between exchanges. It gets kinda old but the benefits far outweigh my option of not doing dialysis.  If not for dialysis well i would be dead by now.

I feel in the future i may have to switch to hemo.  If/when that time comes i think i will do it in center.  I like my clinic and my nurses.  If i feel im not getting good enough dialysis i would switch to NxStage.

MM i know your still scared.  But it isnt that bad.  Maybe bad days here and there but :-)
Even people not on dialysis have bad days...  Think positive  (even though it sucks we make the best of it).

Yep, I know that dialysis doesn't have to be that bad, but it could be worse if you are not getting the best dialysis possible.  And it looks like you may be reviewing your own options, and that's sort of the point of my questions.  I'm just wondering about patients' "quest" for the best dialysis they can get.  If you decide to switch to hemo, would your clinic/neph be supportive of your choice?  I'm glad you like your clinic!  It's always good to hear from people who actually LIKE their clinic!

Thanks for that!

If i switch it wold be do to PD no longer working.  I hear the peritoneal lining can wear out or that for other reasons PD just is no longer a viable option.  So i wouldn't switch by choice.
My neph is a great guy.  On my monthly visit i am usually scheduled last cause me the neph and nurse will talk about whatever after he does my monthly checkup and goes over my labs with me..  I have only been doing dialysis a little over a year.  But i have known my Neph for about four/five years.  So we talk sports current events ect ect.  Which is cool IMO.

With that said my Neph never really told me much about PD.  he went over it briefly a long time ago.  And TBH i forgot about PD until i joined IHD.  I went from an uninformed patient to one who knew what he wanted.  he was surprised how much i had learned and how fast.  When i told him about IHD he was very positive about it.  He could tell i was getting good answer to real problems and questions.

I think people with private insurance would have a better chance at getting longer sessions if they wanted them.  People on medicare seem to be like second class citizens.  Which upsets me because i will be forced to go on medicare even though i like my insurance.  We should have the choice of not going on medicare if we so choose.

PS.  Dont take my medicare and second class citizen as offensive this is just a viewpoint.

[rocker]

@rocker, I've heard other people talk about the problem of getting a heparin pump for home hemo.  My own clinic has said the same thing, but it is an independently owned clinic and I am hoping if I need a hep pump in the future, I can talk someone into believing I'm not too stupid to learn how to use it.

Yeah, and it's really not a question of them thinking we're stupid, because they constantly refer to us as their "star pupils" and the nurses frequently joke with me about when I plan to start med school.  (Turns out I'm even flagged at NxStage...when the guy mentioned it, I made a joke about "Oh yeah, that b*tch..." and he said "No, actually it's more like superstar."  Great, does that mean I can get a delivery driver that can figure out where we live?)

It's probably more that the clinic director was a dialysis nurse for years, and so has seen Bad Things Happen.  She's super-conservative and is constantly freaking when I do anything different.  (She told me he couldn't possibly take a treatment of over 22l.  I told her "I'm raising his dose, and this is how I'm doing it" and when the doctor ok'd it, she agreed unhappily.)  She argued that the cartridges don't have a port, I told her that people use the air port and that I've never once had to pull air.  She wrings her hands and mutters about contamination.  But I've been advocating for this for nearly a year now, to the point where it's become a joke with the nurses.  ("Oh right, and the heparin pump...")

Oh, and yeah, I really do like her.  And the home clinic is such an infinite improvement over the center that I can't even express it.  But her fear of novelty does get on my nerves sometimes.

But he really is doing well, and it's only the phosphorus that's a problem, so I haven't become a genuine  about it.  Which I will do if his labs get worse or some other problem arises.

  - rocker

[MooseMom]

paul.karen, I wondered the same thing about Medicare vs private insurance, so I found someone to ask, and this is the reply I got...

http://forums.homedialysis.org/showthread.php/2710-Why

Maybe things will change in the future.  The dialysis providers sure would like it to!  They get more money if you have private insurance, so they'd like it if you could stay on it and not have to switch to Medicare.  Does your insurance policy have a lifetime cap?  If it does, you may benefit from the new health care reform bill if it is not repealed by the new Congress.  If it does have a cap and the cap remains in place if health care reform is repealed, then I don't think you'll have much choice as dialysis costs can run up very quickly.

@rocker, I guess I can see how your clinic director could be so conservative...these are life and death situations.  She probably hasn't seen a lot of patients who have smart and able caretakers like you, and maybe she still needs to get used to the idea.  I have a feeling that you're going to eventually get that hep pump!

[thegrammalady]

i do incenter nocturnal. there are 3 clinics in the denver area that do nocturnal. the center in castle rock is starting soon and there are some in colorado springs. i love it. i'm off all blood pressure meds. don't take phos binders and my pth is finally under control. i do 7 hours and most nights have no problems sleeping between 10pm and 2 am. the night shift must be out by 5am so sometimes i snooze till 3:30 or so.   many dialysis patients that run 4 hours go home from their shift, throw up and sleep the rest of the day. i haven't had that problem in 2 years. longer and slower is definitely better.

[MooseMom]

thegrammalady, I'm assuming you did some other kind of dialysis before you started nocturnal 2 years ago...was it the standard 3xweek incenter?  Were you told before you started D about nocturnal?  What made you decide to start doing nocturnal...did your neph suggest it to you, or did you have to go search elsewhere for this sort of information?  Gosh, that's really good that so many places around you offer it...I can't find any clinic around me that offers inclinic nocturnal.  My clinic is only a 5 minute drive away, but it doesn't offer inclinic nocturnal.  Anyway, tell me more!  (And thanks for your patience!)

[paul.karen]

Thx for that link MM  ...

[Riki]

I did PD for nearly 5 years, before peritonitis made it impossible.  I switched to in-centre hemo because that was the only other option, and really, it still is the only option.  I miss PD, because there was more freedom with it, and no needles.. *L*

That being said, I think I'm getting better dialysis on hemo.  Even though PD is more constant than HD, I was carrying around a lot more fluid than I realized.  I was carrying an extra 10kgs in fluid that I didn't know was there.  The hemo took that off, and if my bp is any indication, I have more to come off still.

If nocturnal in-center hemo was to become an option, I would jump for it so quick.  It's closer to what I was used to with PD, where I'd hook up to the machine at night and go to sleep.  I sleep pretty good in the center anyway, so I don't think it would be that big of a deal.

[tyefly]

Rocker....  I have had the same experienc.... my clinic  started saying that NO ONE does noctural..... with Nxstage...     and then I started bringing in information..... that was a year ago....  I have them convienced that it can be done and is done in other clinics....Doctor approves it all.....   I went from 20l to 30l  too.....   I also slowed my speed down from the clinics 430   to   370   that added a hour to my treatment....  and way better on my fistual and pressures.....  I run for 4 hr and 29 min....   I manually add heparin 1.5 hours before My time is up so that I dont clot the machine up....  I am waiting for the pump to arrive as they have told me that it was ordered...( for three months now )   I have the correct cartidges 171b....  so I just need the pump to get long dialysis  and sleep while I am doing this 4.29 hrs 6 days a week.....   I believe that everyone can do longer dialysis if they want....  may not be a full 8 hours  but   longer than the short daily that really isnt much better than in center....  All we have to do is to slow down the blood flow speed.....  and its better on the fistual..... maybe then we will never see a fistualgram....   which is harmfull to the fistual.....  anyway   just a thought

[MooseMom]

That's really good, tyefly, that you're clinic is open to "new" ways of thinking and doing things, that they've listened to you and have come around to your way of thinking (although it took a while!).  I supposed the clinics get in a routine and are trying to get patients in, dialyze them, and then get them out so as to get the next patient in, etc.  I would like to think that most clinics put their patients' health at the forefront, but it is hard to substantially change the way things have been done for so long (standard 3xweek incenter).  It's like trying to turn an ocean liner around.

I guess that ultimately it is up to us patients to educate ourselves about how to get the right amount of dialysis for our bodies.  If you are sick and scared, it is not easy to research this and that, but just visiting sites like this at least informs us that getting good dialysis is possible.  We are always told that we need to work WITH our care providers as a TEAM, but sometiimes I wonder if the rest of the team forgets that THEY have to work with US, too!

[needlephobic]

When I first found out I had to do D my worst nightmare come true. I am so afraid of needles. I spent all of my adult life avoiding needles at all cost. Told my neph about it he walked me to the D center and had me talk to a nurse there. They showed a video on pd wasn't interested in that. Then neph sent me to another Doc about a fistula. He explained it to me like I was another doctor which scared the heck out of me. I was thinking about not doing dialysis cause of my fear of needles. I found this site when I was looking for info on fistulas. The neph never told me anything about my numbers but wanted to start me on D right away so the put in a perma cath in my chest fistula in right wrist afterwards woke up in the dialysis center in a corner curtain pulled around my bed and lights off had tubes running across me to a machine and I freaked almost pulled the tubes out. It would have been nice if neph was there to walk me through D but he wasn't. So now they took away my therapy for my feer and trust issues have to look elsewhere they took away my kidney fund tried to change my schedule at D cause I was late. so currently seeking out another neph at OU Medical up in the city going to tour the other D center across town. Today at D I took a xanax and tried to let them stick me just couldn't do it them things just scare the crap out of me and it is so stupid for me to be afraid of needles ((((shivers)))). If I can't get over my fear I am dead man walking.   

[Riki]

Needlephobic, if you don't mind me asking, why didn't PD interest you?  I know that if I was able to, I'd go back to PD in a heartbeat.  There are no needles, just a small tube that no one can see.  You look after everything yourself, so that takes care of the trust issues as well.  It was a heck of a lot easier to travel, not to mention a heck of lot less expensive!  Everything was done on my own schedule, and I liked that too.  It's a totally different experience.

[needlephobic]

Needlephobic, if you don't mind me asking, why didn't PD interest you?  I know that if I was able to, I'd go back to PD in a heartbeat.  There are no needles, just a small tube that no one can see.  You look after everything yourself, so that takes care of the trust issues as well.  It was a heck of a lot easier to travel, not to mention a heck of lot less expensive!  Everything was done on my own schedule, and I liked that too.  It's a totally different experience.

At the time I I was scared confused and nothing made since to me. After doing research on it and other ways of D I thought I could handle the needles and get over my fear. The tube they showed me was huge and I didn't want that hanging out of my body and was told I would need somebody to help me well I am on my own. My brothers and sister have no clue what I am going through so I new they wouldn't be no help. With all the exchanges didn't like that cause I am on the move all the time when I am not at D. I am still confused about all this my neph has not told me what my kidneys are doing have not seen him in over a month now and when I do all I get from him is stupid looks like he cares but don't it drives me crazy. I was getting help from my social worker until she retired / quit and I knew the docs were on her back about trying to help me.I also read alot of scarey stories about pd and I didn't want no part of it. Yes I have a cath in my chest the tube they showed me was much bigger than the cath I got right now and it will have to do for time being until I get help with my fear or it has to be taken out cause I don't want another one put in . I be dead man walking   

[Riki]

it sounds to me like they are trying to discourage you from PD.  The PD tubing is a bit longer than the line in your chest, but it's thinner and more flexible.  I don't know why you were told that you couldn't do it by yourself.  The exchanges are every 6 hours, or if you use the cycler, it's all done at night while you sleep.  Depending on how you do with the night exchanges, you might need to do one exchange during the day, and that's it.  Exchanges take about 20 minutes to do.  When I was a kid, I did one on my lunch hour at school.  I did those by myself.  My mom helped me with things, but not because I needed her help. It was more that she's my mom and wanted to do some of it for me. *L*  The cycler takes about 10 minutes to set up, and you can set it up in the morning and leave it if you want.  The only time you'd have to deal with needles would be when you have to add medication to the bags.

[needlephobic]

it sounds to me like they are trying to discourage you from PD.  The PD tubing is a bit longer than the line in your chest, but it's thinner and more flexible.  I don't know why you were told that you couldn't do it by yourself.  The exchanges are every 6 hours, or if you use the cycler, it's all done at night while you sleep.  Depending on how you do with the night exchanges, you might need to do one exchange during the day, and that's it.  Exchanges take about 20 minutes to do.  When I was a kid, I did one on my lunch hour at school.  I did those by myself.  My mom helped me with things, but not because I needed her help. It was more that she's my mom and wanted to do some of it for me. *L*  The cycler takes about 10 minutes to set up, and you can set it up in the morning and leave it if you want.  The only time you'd have to deal with needles would be when you have to add medication to the bags.

What I seen was this long big tube they had on the table was bigger then the tube in me right now. Told me they were prone to infections. and causes hernias showed  me a machine that went with it and said I needed a partner to help me with it. was told there will be alot of boxes of supplies I didn't have room for. When you said needles for meds I am so scared of needles I will not touch one more then shoot anything in a bag or my body oh heck no I have trouble when the shoot meds in my tube at D it scares me bad. Tired to have them stick me last Sat and I was drugged up on xanax and still couldn't do it   

[Riki]

The tubing is long, if you're looking at the whole thing.. most of it is inside you.  The last one I had only came out maybe 3 inches, and that was with the extension part that's changed every 6 months.  I don't know why you were told that you needed a partner for the machine.  I'm visually impaired, and I had no problems setting up the machine.  I had a hard time lifting the drain bags, but I came up with a system for that too.  It still sounds to me like they were trying to discourage you from choosing PD

[needlephobic]

The tubing is long, if you're looking at the whole thing.. most of it is inside you.  The last one I had only came out maybe 3 inches, and that was with the extension part that's changed every 6 months.  I don't know why you were told that you needed a partner for the machine.  I'm visually impaired, and I had no problems setting up the machine.  I had a hard time lifting the drain bags, but I came up with a system for that too.  It still sounds to me like they were trying to discourage you from choosing PD

Well with what i seen it was huge as in round. Don't know if they come in sizes or not. Like i said they told me I need somebody to help me with it. I really have no room for the supplies or the machine as of right now I have no clue where I will be by the end of the year or summer. My greedy brother and his greedy girlfriend already talked my sister into sell my parent's house that I live in now they are going to try and rezone it so a business  will buy it so they can get more money and kick me out to the streets knowing I am sick and have this disease they don't care they just want the money. I believe if I died tonight they wouldn't find me for about 3 days cause they don't check on me and they would be happy more money for them. So my life in in the air right now can't afford rent that would take all my disable money housing is on a freeze and there is a year wait time so I am screwed looks like maybe under a bridge for me later this year.

[Des]

We here in SA we have no options at all.

It is PD or HD for 4 hours in centre dialysis. That is it. The medical aid won't pay for longer dialysis and the home HD is not available here as yet. They don't offer nocturnal as well.

So no matter how much better "longer & slower" dialysis is for me I don't have the option of doing it. 

[Gandalf]

Hi, agree with Des - we have few options here in South Africa - its PD or In Centre Hemo for 3/4 hours, usually 3 times per week.  That's it! Sometimes, when I read these posts, I must envy you guys a little, as you seem to be able to exercise so many choices, and have such a huge infrastructure of care staff.  Here, just getting dialysis is something of a privilege, and if you have no medical aid, your chances of receiving optimal treatment are substantially less, as there are no where near enough centres to accommodate the need.....  So we don't really reflect on whether we are getting enough dialysis or not!

[Bruno]

Isn't it odd to see the different approaches around the world? What struck me in one of the earlier posts was not being allowed to do your own iron infusion and, I assume, your own Epo or Aranesp. It is indeed strange how the medical staff in one country say you can't and in the next they say you can.
And the madness (pardon me, but it is silly) of trying to do nocturnal dx without a heparin pump because one supplier (nx stage) doesn't agree whilst another supplier (Fresenius) says it's OK.
It does make things hard.