I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: ChickenLittle56 on January 06, 2011, 01:10:27 AM
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On Monday I told the Neph if I can increase my time from 4-1/2 hours to 5+ hours. We discussed what were the reasons why I wanted to increase time. I told him that I can lower my BFR and UF rate. I mentioned to him that it would put less stress on my heart and keep my BP from dropping as it has been doing lately. In the end he increased my time by 10 minutes. The PCTs and the nurses ask why I would want to change my time and I would tell them the same thing.
On Wednesday I went to D and the first thing when I entered the floor and some of the PCTs were telling me why I wanted to stay 6 hours on the machine, don't I have a life and it will mess up their take-off put-on times. My PCT told me that she set the machine to 6 hours and I started to tell her to lower my BFR. thats when she told me that it was only set for 4hr40min. I kept telling them that it a more gentler form of dialysis whenever they ask. Its hard to get it into them that longer is better. They keep on telling the 3hr patients they need to go up 3-1/2 or 4 hours, well I want to add time to my treatment and I am mocked for it. >:(
I will have to plead my case to the clinic admin. next. I am willing to change my starting time if I have to, just give me more time
BTW NxtStage is not an option since I don't have a partner..
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Wow. It's not often anyone would ask for MORE time. I think that's really good of you and considerate to your longer term well being and health to request that. I like how the PCT's whinge that it screws up *their* times etc... I meean REALLY??? You're doing this for your LIFE and they're worried about getting off 20 minutes later?
I really applaud that you are trying to do something positive to improve your dialysis experience and hopefully outcomes. I am bemused your doc won't work with you so much on this. They should be agreeing with you - or at least providing informed reasons as to why they don't think it would help much... not arguing how much it screws up their lives.
I wish you luck in getting things resolved....
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I also think you are brave and very pro-active in the longterm care outcome..... but I battle through the 4 hours forced on me already and I cannot see myself doing it longer than the doc prescribes.
I can tell you that if I have to wait longer to go on the machine I get pretty Peefed off ... maybe that is why they are so niggly about it.
I hope you get it sorted out.
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I am going to a VA hospital, which is not a for profit center. I seem to have good luck getting most any time or duration I or my Dr. want. Screwing up their time isn't an issue because they are not in an assembly line mentality like the for profit centers are. It is too bad the administrators are out of touch with patients needs instead of the bottom line for their profits.
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On Monday I told the Neph if I can increase my time from 4-1/2 hours to 5+ hours... I kept telling them that it a more gentler form of dialysis whenever they ask. Its hard to get it into them that longer is better. They keep on telling the 3hr patients they need to go up 3-1/2 or 4 hours, well I want to add time to my treatment and I am mocked for it. >:(
I will have to plead my case to the clinic admin. next. I am willing to change my starting time if I have to, just give me more time
BTW NxtStage is not an option since I don't have a partner..
Perhaps you should show them the work of Dr. Scribner et al with HDP (Hemodialysis product). Looks like you may have HDP of around 40, which is still inadequate. Do you have a choice of nocturnal dialysis?
(http://shup.com/Shup/454896/scribner_HDP.gif)
http://www.therenalnetwork.org/qi/resources/HDP.pdf
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Yeah, print out some of this information and hand it to them (if they can read) so they know you are not just pulling this infromation out of your butt.
:waving;
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I also think you are brave and very pro-active in the longterm care outcome..... but I battle through the 4 hours forced on me already and I cannot see myself doing it longer than the doc prescribes.
I can tell you that if I have to wait longer to go on the machine I get pretty Peefed off ... maybe that is why they are so niggly about it.
I hope you get it sorted out.
Most, if not all, patients there wouldn't care to sit 3-1/2 hours if that. I was like that when I first started but since coming to IHD, I would try anyway to get my time reduced and now I am an informed patient. They all think as long as you have good clearance that amount of time is good enough. I will give them the HDP chart so they can see why I am choosing to stay on longer.
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Good for you for educating yourself. I don't blame anyone one single bit for wanting to get off that damn machine ASAP, especially if you are stuck in a clinic. It's not a pleasant experience. But all patients should be made aware of the health benefits of longer dialysis. I mean, it just makes more sense, doesn't it? Some patients surely do "well enough" on the thrice weekly schedule, but for others, this way of receiving dialysis in not merely inadequate but actually harmful over time. If, despite understanding this, a patient still decides to stick to the 3xweek schedule, that's fair enough, but if that choice is made for him by dialysis staff who are more concerned about their schedule than about their patients' wellbeing, well, that's simply immoral.
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Moose Mom: I am in a clinic (hospital in Romford, England). I don't feel STUCK at all. We have a dedicated staff that care about us as patients and people. Most (not all!) of the patients are great too and we always try to have a laugh. It is hard enough. They have suggested that I might do better on 4 hours 15 instead of the 4 hours I do now. I am not thrilled to do extra time but if it is good for me then I will do it.
Maybe this is the difference between D for profit in the US and D for health on NHS. All this while Republicans in the states want to take back the small steps the Obama Administration has taken on health care for all in the richest country in the world.
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Having done 5 hour D sessions for 4 and a half years (tomorrow marks a month since my last dialysis session, and that was "only" 4 hours!! :rofl;) I kind of laugh at the idea that a\ lot of patients don't even want to do 3.5 hours. I was just warming up by that point! :rofl;
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billmoria, if you are getting optimal dialysis and your clinic is actually encouraging you to do extra time, that's brilliant! And if you also can find a modicum of pleasure and relaxation in your clinic, well, I do envy you. That's really wonderful!!
I don't like the idea of D for profit, but this is the system we are stuck with, and if that profit is plowed back into new technology, innovative techniques and patient well-being, then everyone wins. It's when the quest for profit overrides basic compassion and the desire to help others that it becomes very questionable.
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when i was doing dialysis :clap; feb / 10 i was asked to consider doing 5 hours well if i could do 8 hours i would but too many patients,not enough machines and it would stuff there put on/off times.
of course i will if it helps me feel better.
the dr who suggested this , still don't know her name or what she looks like,
and i quit dialysis 5 months ago.
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There were constant rumours around my unit that a new boss was coming in and he wanted to start a nocturnal session. I was so pumped for that and would have signed up on the spot if they asked..... I would do an 8 hour shift (if i could sleep?!?!) in a heartbeat as I KNOW it would be better for me in the long run. I endured 5 because, again, I knew it would hold me in the best stead for when I got the transplant, and until then keep me stable (which it did) and gave me good clearance and good numbers(generally).
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Having done 5 hour D sessions for 4 and a half years (tomorrow marks a month since my last dialysis session, and that was "only" 4 hours!! :rofl;) I kind of laugh at the idea that a\ lot of patients don't even want to do 3.5 hours. I was just warming up by that point! :rofl;
I feel the same, Richard. I get a kick out of some patients at my unit who complain when myself and the other 5 hour patients get put on first. The nurses tell them "You are 4 hours. If you only get on at 1:00pm, youll still be done by 5:00pm. He is a 5 hour patient; if he only goes on at 1:00 he'll still be here at 6:00pm"
Myself, I started out at 4hours for about a month and then they increased it to 5 hours because I wasn't clearing well enough.
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We dont have a say , there are 3 shifts per day at our unit , so we have to be done and off after 4 hours ..for the next shift.
By the way i noticed from that chart posted further up , it mentions Malnutrition alot , how does that figure ? I eat like a horse on D !! and i know part can be fluid ,but ive never been heavier in my life !
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Here is an update on my situation. I had a nurse as a PCT today and we were discussing why I wanted to increased my time and we talked about issues like water gain and eating. This nurse has been doing this for more than 15 years and she has handled both hemo and PD and she was open to increasing my time. We were discussing my treatment and she said that if the Neph oks the increased time then she'll ask to put me on work around that time. I know that I will have to start on 3rd shift so she said that;s good. Maybe there is way to get more time, I'll keep my fingers cross.
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It is the usual story - everyone is really different. My bloods are close to perfect and I started on four hours every second day and now I am back down to three hours every second day because I still have reasonable residual function. I started early because they said there were benefits to starting early and now reports say it doesn't really make any difference when you start. I wanted to maintain the residual function I had so I discussed with my neph to reduce my hours so we did two weeks of bloods with the reduced hours and found it made absolutely no difference to the results. My bloods are pretty close to perfect on those hours. Doing the shorter hours is maintaining the function I still have left - whereas if I had done longer hours I would have lost my residual function much faster. As soon as I need to increase my hours I will but for now I have no intention of losing the function my own kidneys still have. I have been on dialysis two years now and it is really unusual to have any residual function after that time. By doing three hours every couple of days has kept my own kidneys doing their thing and not getting lazy and letting the machine do all the work. I have NEVER felt better. You have to do the hours that are best for YOUR body.
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It is the usual story - everyone is really different. ..
. Doing the shorter hours is maintaining the function I still have left - whereas if I had done longer hours I would have lost my residual function much faster. .
Lucinda, I believe your story is more exceptional than normal. It is true that most patients are different, such as patient size. For example, the HDP index described above does not take patient weight into consideration. Heavier patients generally require longer dialysis given constant blood flow. However, the majority of the in-clinic hemodialysis patients are not receiving adequate treatment. Please read the paper by Scribner where they described:
"removal of toxic middle molecules and PO4, which dialyzes like a
middle molecule, is reduced because of the shortened time. Short hemodialysis sessions
have great appeal only to the uninformed dialysis patient and to for-profit dialysis centers."
There is also statistics that about 31% of the dialysis patients have not been treated by a nephrologist before they start - suggesting strongly that there is a large population of patients who waited until they have little kidney function before they started dialysis.
As to your statement that "longer hours I would have lost my residual function much faster", I think there is no scientific proof to back that up. In fact I believe you may be able to take a higher potassium and phosphorus diet and stay healthy if you undergo a longer dialysis treatment time.
http://www.therenalnetwork.org/qi/resources/HDP.pdf
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You are right to be thinking a longer dx time would help, there are many enthusiasts like me would could attest to how much better you feel. I know the general view (most Nephs) is that you need a partner but this is by no means unanimous. I came across a Neph who runs a very successful (outcome wise, I mean) extended hours program who doesn't believe it necessary. He says you must encourage patients (is that the right word for us?) to be independent right from the start because that will produce a better result.
Take a look at Prof. John Agar's site, put Geelong Hospital into Google.
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I have to agree with staying independant... I do everything my self and If and when I do have someone with me while I am on Dialysis there is nothing for them to do..... Unless of course they really want to hang bags and breakdown cardboard..... I suppose I could let them hold my tape... while I am cannulating myself..... I really cant think of much someone else can do for me with Home dialysis.... its pretty easy.... for the most part.... its routine.... like dishes....laundry.....
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I don't want to be the one to have the last word but I must point out to those who put down the American system because it is driven by the 'profit' motive and nominate the free public systems of ,say, Australia as being altruistically motivated, well...think again. Our system may not be driven by profit but by its very nature is driven by cost restraints. A moment's thought would tell you that no system can be completely free.
And just as there are those who say the American system of 3x5 hour dialysis weekly is profit driven they neglect to mention that the same 3x5 hour dialysis system operates in Australia because of cost restraints.
I use Australia as van example because I don't want to offend my international friends, but I'm sure you get the picture.
The fact is, and again I speak only of Australia, that we don't do all that we could for dialysis people for a number of reasons, and cost is certainly one of them.
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Yes Bruno, but seems to me the US system (in general) is more interested in shorter sessions at higher pump speeds, which put more strain on accesses and the patients (eg: 3x3-3.5 hours). The reason is to get more throughput of patients through and thus profits to those centers that are for profit. I am not going to say Australia is the most wonderful system in the world, but I honestly believe that doctors here have a priority to put the needs of the patient slightly above what works for the dialysis unit - so I got bunged on 3x5 hours because that's what I needed for good clearance. There's even a guy who I saw who is on 6.
Our system is far from perfect, but given that we subsidise meds, and offer dialysis to anyone that needs it irregardless of insurance and all that, I think we honestly try very hard to do the right thing by our citizens. Again it's far from perfect, but I know which system I'd rather be cared for by.
I am happy to pay my tax bill given what the taxpayers of our country have given me over the years, and continue to via the subsidised transplant meds (not to mention the operation and follow up care....)
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Bruno, one of the severe failings of the American for-profit model is the lack of integration among various medical service providers. For example, a dialysis centre may be unconcerned that patients are underdialyzed because their own profits are unaffected by hospitalizations. In a single payor system there is a systemic benefit in assuring that patients are adequately dialysed; costly hospitalizations and the treatment of adverse consequences ultimately must be paid out of the same funds as dialysis itself. I believe that every-other-day dialysis is better for patients and more cost effective as well. My bet is that it will be adopted in Australia, Canada or the U.K., but not in the U.S.A.