Dialysis Today

[Dragonfly]

Went to dialysis today, it went better I guess raising my dry weight was a good thing.

This center is crazy where I am, today there was some big meeting of staff, taking almost everyone off the floor. There was one nurse and two techs for 20 people. They removed one needle and when hold time was done, they just kept walking past me. For ten minutes I sat there waiting to have my second needle pulled, then finally I said out loud, does someone want to show me how to pull my needle, I will do it myself, I have been sitting here waiting ten minutes and the nurse gave me a nasty look, so I said well I have.

It's crazy they think because we need dialysis to keep us healthy and living that they can do what ever they want. I want to report this, because this is not the first time this happen. Should I?

[cdwbrooklyn]

Absolutely, you should report this to the administrator of your center.  Let him or her know that if they can't pull your needles in a timely manner then they should teach you how to do it.  You can pull your own needles should you chose to learn.   This is one thing I did not like about in-center like you don't have a life after you dialyized.

 

[big777bill]

 No doubt about it NxStage or PD is the way to go. The freedom is something you don't get in-center. No to mention how much better you feel after doing home dialysis for a while.

[Riki]

how come they didn't pull both your needles at the same time.. I'd hate to sit there for a half hour just holding.. 15 minutes holding is hard enough to do

[Dragonfly]

Absolutely, you should report this to the administrator of your center.  Let him or her know that if they can't pull your needles in a timely manner then they should teach you how to do it.  You can pull your own needles should you chose to learn.   This is one thing I did not like about in-center like you don't have a life after you dialyized.

 

Thank you

[Dragonfly]

No doubt about it NxStage or PD is the way to go. The freedom is something you don't get in-center. No to mention how much better you feel after doing home dialysis for a while.

Thanks for responding to me.


I am looking into the home dialysis, I just don't know if I can stick myself with that big needle, when I was doing PD at home after a few months of sticking myself with my epo I couldn't do it anymore. When I did do PD, my catheter grew into my fallopian tube and the dr. said I can't do it anymore.

[Dragonfly]

how come they didn't pull both your needles at the same time.. I'd hate to sit there for a half hour just holding.. 15 minutes holding is hard enough to do

They don't do that at my center, they pull one, then I hold for ten and then they pull the other and I hold another ten. I don't mind I just watch tv. Besides I am a bleeder.

[Desert Dancer]

No doubt about it NxStage or PD is the way to go. The freedom is something you don't get in-center. No to mention how much better you feel after doing home dialysis for a while.

Or just home hemo period, doesn't have to be NxStage. Not everyone on home hemo does NxStage though most seem to think it's the be all and end all of home modalities.

(Not directed at you, Bill, just a reminder is all. I feel like a red-headed stepchild around here sometimes 'cause I seem to be the only one with a Baby K and no one can relate.)

[jeannea]

I get a little frustrated when it seems like the answer when someone has a problem is do home hemo. It happens on thread after thread. I know some of you love it. Not everyone can or wants to do home hemo. And it should not be the only way to get decent care. We deserve decent care for all modalities. Cdwbrooklyn is right. Report it to the manager and see if they can fix things. From there you can make informed decisions about your treatment.

[Desert Dancer]

I get a little frustrated when it seems like the answer when someone has a problem is do home hemo. It happens on thread after thread. I know some of you love it. Not everyone can or wants to do home hemo. And it should not be the only way to get decent care. We deserve decent care for all modalities. Cdwbrooklyn is right. Report it to the manager and see if they can fix things. From there you can make informed decisions about your treatment.

Well, don't you think perhaps there's a very good reason home hemo is suggested "on thread after thread"? And that maybe those suggestions are backed up by cold, hard facts?

Look, I know home hemo is not for everyone. Some have limitations or fears they simply cannot overcome. Some don't want to 'medicalize' their homes. Some live in the US and have no partner. I get that.

I also know there are those who manage to get very good care in-center. But that is not the norm, not by a long shot. If it were there would be no reason for IHD to exist. "Should not be" the only way to get decent care and "Is" the only way to get decent care are galaxies apart. You don't have to do anything but cruise around these boards for a while to figure out that fact.

We are living in an age where ignorance and mediocrity are held up as the gold standard and incompetence has been raised to an art form. Unfortunately that seems to be particularly true in the case of the medical field, rather than less true. Everyone knows how pissed off a tech gets when you simply ask them to put on gloves or a face mask. Can you imagine what would happen if a patient were as vigilant and vocal as they ought to be? (As I was my short stint in-center. It wasn't pretty.) Do you think every tech and nurse is going to say, "My goodness, you're right, I didn't change my gloves. Thank you for pointing that out". Everyone who's gotten that response please raise your hands. The point being, there are ten thousand different ways these people can make your life miserable, up to and including killing you. And that's only taking into account incompetence and indifference, not retaliation or malevolence.

I will never stop suggesting home hemo to newcomers, not because I think it's for everyone but because the vast majority of new patients are simply unaware that home hemo is 'a thing'. The techs and nurses in-center don't have the time for it if they even know it exists themselves. Hell, there are nephs who have never heard of it, particularly nocturnal. Where are people supposed to get the information except on their own? If they've managed to make it to this site of course I'm going to encourage them to educate themselves and speak up for themselves. But I'm also going to educate them on the benefits of cutting out the middleman and doing it themselves at home, and all the myriad benefits therein.

I have my life back. I have my health back. I have no restrictions. You can count me as one of those "who love it" and for damned good reasons. If I can educate just one person about it and they then go on to regain their life and health as I have, words wouldn't be able to describe how wonderful it would feel to know that.

[jeannea]

Educating is one thing. I think we've gone too far. It has turned into bragging about how much better your lives are than everyone else. I think we're at the point where it can make people on in-center feel like their inability to do home hemo is a failure. A failure in taking care of themselves when they can't choose that. I'm just asking people to think about this a little. Are we educating or trying to influence? Are we being helpful? Maybe the person needs advice on how to solve in-center problems more than advice on leaving the center. I just want people to consider the situation and think carefully about what that person is asking. That may be an unpopular position but it's what I think.

Personally I can never do home hemo for various reasons. I was lucky and got a transplant. I did 6 months of hemo and 2 1/2 years of PD. PD was starting to not work as well. I would have had to go back to in-center. It is what it is.

[Riki]

I agree with Jeannea.  I'm one of those people who cannot do home hemo, even if it were offered here, which is isn't.  It does seem that whenever someone complains of how they're treated in centre, the solution is to go to home hemo, when really, a solution should be to have someone to speak to at the centre about any grievances..

[MaryD]

I'm with Desert Dancer. 

It's a matter of educating people that home haemo exists and then giving them support for it.  It sounds to me that sometimes people in the US are not even aware, or given the choice, of doing PD.  IHDer's who do manage home haemo successfully should get the message out - it's possible, it's not to be scared of, it gives more freedom, and it's better for you.  Some people will not be able to do it for various reasons, but that doesn't mean that it shouldn't be discussed and recommended enthusiastically by successful practitioners.

In Australia, home haemo (even without a partner) is regarded as the 'gold standard'.  PD is preferred over in-centre HD if the person is suitable.  And our in-centre HD is much preferable to in-centre HD in the USA.  We are treated to bring the healthiest outcome for patients, rather than the cheapest cost for the providers.

I must admit I have qualms about doing home haemo myself, but John Agar's web site and this discussion board are both beginning to convince me that I should be able to do it.  I read all the posts about home haemo thoroughly with the idea of that being my option after PD.

[Desert Dancer]

Educating is one thing. I think we've gone too far. It has turned into bragging about how much better your lives are than everyone else

It isn't bragging if it's the truth. It's also true that I rarely post here anymore and one of the reasons is: I don't want to sound like I'm bragging. I make an effort to read people's intros and posts before I respond to them to make certain they haven't already stated it's not a possibility for them. So I'm sorry that's the way you take it. I will not apologize for telling the truth about my experience.

[Simon Dog]

Yes, everyone deserves the best treatment possible - but 3x weekly is NOT optimal, and is NOT as good as EOD (Every  Other Day) or short daily.  Google a bit and you'll find countless journal papers confirming this.

One has to get past declarations of "what one deserves" or "how the system should work", do a realistic analysis of how the system DOES work, and then devise a strategy for the best treatment.    My strategy is to start home hemo training as soon as the fistula is ready, and probably go with Baby K EOD nocturnal.

[cdwbrooklyn]

I do understand everyone’s point a view; however, I think we got so involved with enjoying Nxstage that we became insensitive to our fellow in-center patients.  For that, I sincerely apologize.  I know how it feels when someone is throwing something in your face over and over again and it’s something you cannot do or have no desire to do.  It can be very frustrating.   Going forward, I will not suggest someone do home hemo unless someone ask if I know of another form of dialysis.   I don’t ever wants to come across as bragging unless we are in a challenge for bragging rights.  Anyhoo, I was in-center for 11 years and it really hurt when someone came in and starting talking about their new kidney knowing I was not able to get one.  It made me cry over and over again and for this reason, I do not visit my former in-center because I don’t want to put anyone through that.  So I do understand where Jeannae is coming from.   

Just my two cents. 

[Desert Dancer]

So then what are we supposed to do? Design a litmus test for IHD membership?

"Sorry, you're not sick enough/miserable enough so your dialysis experience is not valid and we don't want to hear from you"? Really?

Maybe it seems as though it gets repeated over and over again because - in case no one noticed - we get TONS of new members every week and they all ask basically the same questions and the answers don't change: educate yourself, speak up for yourself, take it home if you are able and willing.  It is not my fault or the fault of any other home patient that taking it home IS the gold standard in this country. That's just the way it is and I don't see that changing as long as profit is the motive instead of health.

I don't see anyone bragging here or lording it over those who are in-center and I never have. You'd really have to be a special breed of asshole to do something like that, and yet that's what I and other home patients here have just been accused of, simply for sharing our relatively good experiences and encouraging others to look into going home.

If I can't share my experience without being called a braggart then maybe I really don't belong here. Let people go into the archives if they want the info, I'm done.

[lmunchkin]

Wow, I just popped on here and read all of this.  I just wanted to say, I loveNxStage.  Wish I had known about it when all this started with John.  Even if it was an In-center type dialysis he was getting, We are so Blessed to be at home doing it!  We are home people and will always be home people.

In saying that, I do advocate "Passionately" for NxStage particularly, yes even over PD and it was a good one too. And I hear the PD IDHer's talk about how wonderful their D. is, it doesn't upset me one bit.  I don't get upset with those who do In-center either, but John has done them all, and we/he is very happy with NxStage.

Maybe, in my passion for this modality, I may sound like Im bragging, well Im sorry.  I tend to brag about things that are special to me.  I brag on alot of things.  Im sure there are a number of people who get tired of my Bragging about Jesus too, (Im not going to stop that for sure) but they may voice their opinion, and that is fine with me.

I, like DD, know home dialysis is the best thing going now, because of the better care people are getting not only physically, but mentally too, if for the simple fact of being in their own environment.

I realize that some are not able to do this modality at home for various reasons, and rely totaly on In-Center for their care. There are some good centers out there Im sure, but John went to different ones, and both did D. him, but they do the best they can do because of overload in the clinics.  Look, I don't mean to get carried away with this dialysis at home, but please, if you can't do it, don't keep us from being happy about it. Or maybe we should squealch everyone on IHD from discussing "Any form of Dialysis- even In-Center (the good ones)" or Transplants, maybe we should stop them from bragging about that too.

Iam happy for anyone who has found a better way than I.  I think of them as being Blessed, when maybe its something we cant experience. I will continue to "Push" Home D. to up & coming new members. If I say something offensive, then Im sure I will be repromanded by the moderators.

Ill just try to not be so "jubilant" about it!  When it works superbly, it is so hard not to.

God Bless,
lmunchkin

[MommyChick]

Hi everyone! I know its been a while since I have been on here things have been pretty busy for me.
I totally understand everyone's point of view! I personally am an In-Center Hemo patient. this Nov. will be 8 yrs doing this fun stuff. Now I have a toddler at home so I personally prefer to stay in-center, But if your going to stay in-center you do need to speak up if your not happy & let people know how you feel! My in center takes care of me very well but I also help myself when its time to leave as far as getting Bp's or taping up my arm, etc. You def. need to speak up though if your not happy. Hope things turn around for you! Best of luck!

[MaryD]

It has been pointed out frequently that this discussion board is mostly used when people are 'down'. 

Should people who are happily on PD not recommend PD, too?  Just because someone is successfully and happily using one particular mode of dialysis, they should BRAG loudly for the benefit of everyone else - not because they are smarter, but because they are showing their way might be worth considering and may be possible for other people.

Desert Dancer - don't abandon us.  You are one of the people who have convinced me that I could do home haemo when the time comes along with Cebu Shan, and Angiepkd and many others.  Please 'brag' on!

[skg]

Two cents from a newbie: I really have appreciated the range of expressions and experiences which ALL of you have described. I don't know yet whether I'll have to go with any sort of dialysis - maybe I'll get lucky and a preemptive transplant will work out. But I do know how much all the info here has meant to me. And for home hemo in particular - I've had a couple professional care givers here (rural South Dakota) say they've never heard of it! If the transplant option doesn't work out, I may have to take whatever my insurance and the local provider know about. So, I really, really want to know the good, bad, and ugly about all the choices - so I can make the most of whatever I've got to do.

Thanks so much to everyone for everything you've posted about your treatments.

Cheers,
skg

[Riki]

I don't think anyone was bragging, I mean, I'll sing the virtues of PD if I think the information is helpful in that particular situation.  It just seems that lately, with every problem with in centre, the solution seems to always be home hemo, when maybe better advice would be with how to deal with hostile or negligent staff members

I loved PD, and was on it for years, starting from when I was 12 years old in 1991, and if I could go back to it, I'd jump at the chance.  I'd also try home hemo if I was able to do so, and if it were available in my province.  I just don't think that home dialysis is the be all end all solution to problems with in centre dialysis.

[lmunchkin]

And you are right Rikki, Home dialysis is not the end all solution to problems with in-center dialysis. I really do not know what the solution is for In-centers now days. I know that I hope he never goes back, unless I become unable.  If places don't offer home dialysis, that just can't be helped.  Hopefully, all places will one day offer it.  But you still have those who depend on in'center for their dialysis.  That is fine, they can still live.  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 get it, John did it, and we are cool with that if that is what has to be.

But John will tell you, He feels alot better on Home Dialysis.  PD or Hemo.  PD cleaned him about like in-center did, maybe slightly better, that is probably due to doing it more often.  But Hemo at home has made a world of difference.  Slower & longer & more frequient dialysis is the contributor for that.  But being at home definately helps.

Im not saying that those who do in-center are failures or stupid or anything like that.  I push home hemo because it made a difference in OUR lives.  Doing things on our own terms is basically the reason we switched, but having him feel much better is a plus.  I wish all could have huge homes with caregivers to help them do D at home!  To at least see the difference it makes.  You are still on the machine.  That doesnt change and will not change!  But being in your own environment helps emotionally, and that can be as important as the physical.

Yes, I realize that John & I are Blessed to be able to do this at home.  We are so greatful!  I still believe that doing Hemo at home is the Best all around whether short daily or nocturnal.  I would not do nocturnal in-center either, now thats just me, but I would do Nocturnal at home. Let my home be the center.  I can take care of my John.  I don't want him In-center or in a nursing home unless I am not capable period.  At least he has me, lot of you don't.  But for what ever reason, I can't help but "Brag" on NxStage.  Im not going to apologize for something that has improved our lives!!

I know that I have jumped in when I hear of some In-center drama going on and suggest NxStage!  I don't like the In-center experience at all.  It sucked for us, it really did!  I realize there are some good caring centers out there, but you are still just getting adequate D.  That is a fact, unless you do nocturnal in center.  They have a lot of peoples they are responsible for, so they have to get them in & out for the next individual.  I only have one to worry about.  I couldnt be a D-Tech in center.   Too much to be responsible for.  What if I goofed and someone died on my watch while tending to another person? Naw, I stick to caring for my man while I can!

Yes I Brag alot about NxStage, and folks, I probably will continue to. Its not meant to make those In-center feel bad or stupid cause they dont go home to D. They have their reasons, Im sure there are some circumstances there. But It saved John's Life & our marriage and being In-Center helped us to realize that!!

God Bless,
lmunchkin

[Simon Dog]

The main point is that each patient needs to educate themselves about the options, and not expect the professionals to tell all the benefits/risks/tradeoffs of various protocols.   Although I have received nothing but positive support for my plan to take it home (after the fistula matures and I get off cath), I can't help but wonder why 100.00% of the existing hemo patients at the clinic I use are in-center customers.   \\

If you want home hemo, you may have to push for it rather than wait to see if it is offered to you.

[Riki]

If you want home hemo, you may have to push for it rather than wait to see if it is offered to you.

When i say it's not offered, I don't mean that it hasn't been offered to me, I mean it's not available for anyone in the province I live in.  I don't believe that nxstage is available in Canada either, but I could be wrong there.

My opinion stands, I don't believe home hemo to be the be all end all solution to problems in centre.  Sure, it may help for some things, but for others, just a little advice on what to do when you are being treated by a hostile staff member might be more prudent.

Also, just because I am in centre, it does not mean that I just lay there and don't take an active role in my own care.  I know what the numbers mean.  I ask for my labs every month so I can keep an eye on things.  I watch the nurses, and I rarely allow them to do anything without telling me what they are doing first.  I don't put my own needles in, because of my eyesight, but if I did have proper eyesight, I'd learn how to do it. 

And yes, lmunchkin, I took offense to what you said.

But you still have those who depend on in'center for their dialysis.  That is fine, they can still live.  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.