I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: brmoore on September 21, 2011, 04:57:23 PM
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The University Of Minnesota has just published the largest study ever done on frequency
of Hemo treatments. They conclude that 3 times a week is insufficient and leads to greater
incidence of death for patients on this schedule. They reached this based on a study of 32,000
Dialysis patients.
For those on a M,W,Fri schedule death occured most frequently on Mon., for those on Tue,Thur.,Sat
schedule Tues is the day.
Bruce
Edited: Moved to News section - okarol/admin
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For those who wish to see more on this study go to:
www.nejm.org
This appeared in latest issue of New England Journal of Medicine.
Bruce
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IMO, they do just enough to be "legal". No, I agree, it is not sufficient dialysis.
lmunchkin
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I think they should have a 5 days of week dialysis for patients that want it, for example my center could probably arrange this cause they are open 5 days a week, but you'd have to figure out availability of chairs, etc.
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That's exactly why I'd like to go on PD but my stupid center won't listen. The nef there keeps saying, "Get a transplant."
Well, I would but Transplants R Us are fresh out.
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I've moved this and included a related news story:
Study: Dialysis 3 times weekly might not be enough
Story
Discussion
Associated Press | Posted: Wednesday, September 21, 2011 6:30 pm |
A major study challenges the way diabetics and others with failing kidneys have been treated for half a century, finding that three-times-a-week dialysis to cleanse the blood of toxins may not be enough.
Deaths, heart attacks and hospitalizations were much higher on the day after the two-day interval between treatments each week than at other times, the federally funded study found.
The president of the National Kidney Foundation said she was "very troubled" by the results published in Thursday's New England Journal of Medicine.
"We could be doing a better job for our dialysis patients" and that might mean doing it more often, said Dr. Lynda Szczech, a Duke University kidney specialist who had no role in the study.
Kidneys rid the body of waste and fluids. Most of the 400,000 Americans with failing kidneys stay alive by getting their blood purified by a machine three days a week at dialysis clinics _ usually on Mondays, Wednesdays and Fridays or on Tuesdays, Thursdays and Saturdays. In both cases, there's a two-day break between the last session of the week and the next one.
The three-day dialysis schedule has been around since the mid-1960s and gives patients a weekend break from the grueling hours of being hooked up to a machine.
However, doctors have suspected that the two-day hiatus between treatments was risky, and smaller studies have found more heart-related deaths on the day after the gap.
"All the fluids and toxins are built up to the highest extent on Monday morning right before dialysis," said Dr. Anthony Bleyer of Wake Forest Baptist Medical Center in North Carolina, who has done similar studies.
The latest research, funded by the National Institutes of Health, is the largest yet. It was done by Dr. Robert Foley of the University of Minnesota and colleagues. All reported receiving fees from dialysis clinics and suppliers.
The team analyzed medical records of 32,000 people who had in-center dialysis three times a week from 2005 through 2008. The average age was 62 and a quarter had been on dialysis for a year or less. After about two years of follow-up, 41 percent had died, including 17 percent from heart-related causes.
Monday was the riskiest day for people on a Monday-Wednesday-Friday schedule. For those on a Tuesday-Thursday-Saturday schedule, the riskiest day was Tuesday.
Researchers found a 22 percent higher risk of death on the day after a long break compared with other days of the week. Put another way: For every 100 people on dialysis for a year, 22 would die on the day after the long interval versus 18 on other days.
Hospital admissions for stroke and heart-related problems more than doubled on the day after a long break than on other days _ 44 versus 20 for every 100 people treated.
Fixing this problem, however, could be daunting for patients, busy dialysis centers and insurers and it would require a rethinking of how dialysis is currently delivered.
Medicare covers the cost of dialysis, regardless of age, spending about $77,000 annually per person. It covers thrice-weekly treatment, but people can get a fourth session if needed.
Dr. Paul Eggers of the National Institute of Diabetes and Digestive and Kidney Diseases said adjusting how dialysis is done "would require some fairly convincing evidence. I'm not sure this one study would be sufficient to change" standard practice.
Kidney expert Dr. Eli Friedman of SUNY Downstate Medical Center in New York, said he's in favor of every-other-day dialysis or even daily dialysis. But it would mean "a multibillion dollar change," said Friedman, who launched the country's first federally funded dialysis center.
A clinic operator said increasing treatments would require additional staff. And patients also would have to be willing to come in more often.
"They don't even like coming in three times a week. It's completely understandable. It's not fun," said Dr. Allen Nissenson, chief medical officer at DaVita, which runs more than 1,600 clinics around the country.
There has been recent interest in more frequent dialysis after studies hinted that it made people feel healthier.
This year, Medicare started giving clinics a financial incentive to teach patients to do dialysis at home, allowing them to cleanse their blood more often. But this option is not for everyone. It requires intense training and patients need a helper at home.
Unless rules change, Wake Forest's Bleyer said people can take simple steps to reduce their risk by not drinking too much fluid between long dialysis breaks and eating a healthy diet.
"Patients must be a little more careful on the weekend than on other days of the week," he said.
Carol Thomas, who has been on dialysis since 2007, watches her water intake especially on weekends and avoids dairy, beans and nuts, which are high in certain nutrients that can cause complications.
Thomas, of Sacramento, Calif., said home dialysis is not an option because she doesn't have someone to help her. Would she make the trip for dialysis more often if given the choice?
"It's an inconvenience, but probably if it meant lengthening my life," the 69-year-old said.
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Online:
New England Journal: http://www.nejm.org
Kidney disease information: http://kidney.niddk.nih.gov
National Kidney Foundation: http://www.kidney.org
American Association of Kidney Patients: http://www.aakp.org
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Alicia Chang can be followed at: http://twitter.com/SciWriAlicia
Read more: http://www.journaltimes.com/lifestyles/health-med-fit/article_01b6344c-f0a3-578f-8ff6-3c658d4bebfe.html#ixzz1YdtYWXe4
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I think they should have a 5 days of week dialysis for patients that want it, for example my center could probably arrange this cause they are open 5 days a week, but you'd have to figure out availability of chairs, etc.
As for now they wouldn't get paid for it, so there's no motivation to change anything.
That's exactly why I'd like to go on PD but my stupid center won't listen. The nef there keeps saying, "Get a transplant."
Well, I would but Transplants R Us are fresh out.
Ask your neph if he's offering his kidney.
Is there no other dialysis center nearby that offers PD??
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Dr. Paul Eggers of the National Institute of Diabetes and Digestive and Kidney Diseases said adjusting how dialysis is done "would require some fairly convincing evidence. I'm not sure this one study would be sufficient to change" standard practice.
Can I even BEGIN to tell you how much this idiotic statement PISSES ME OFF??!! :banghead;
This jerk acts like practices in the WHOLE REST OF THE WORLD don't exist. Like, if Americans didn't do it then the evidence is invalid. Like dialysis has no history, in that longer treatments were the norm to start with. Do we exist in some kind of freakin' vacuum?
But it would mean "a multibillion dollar change," said Friedman, who launched the country's first federally funded dialysis center.
Ah, well, there's your answer RIGHT THERE. :Kit n Stik;
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This drives me NUTS!
Since 2001, when I first advocated for a Bill H.R.1759 to pay for more frequent dialysis, I have pointed to study after study showing that the two days off correlate to increased hospitalizations and deaths. This is entirely in the power of renal administrators to fix. All they have to do is stay open seven days a week and provide every other day schedules. There is nothing stopping this but the imagination of administrators.
I am at a loss to explain why this isn't being done, but I suspect that the power of the business model enabled by the conventional dialysis schedule is more powerful than any study showing material harm to patients.
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Add to that list, the fact that a non-caring person sticking you day in and day out. They want the next "Crop" of people in those chairs cause the more they do, the more they make their money. Some do care, but can't do anything about it, in fact, alot of the nurses really care but their hands (Ishould say mouths) are tied. Would anyone who is getting paid well on average, want to speak about the "going on's" in their place of employment! You'd be labeled a Rat or a Snitch.
Sullidog, unfortunately, 5 days will never happen in your clinic! If it did, I can promise you it would be overfilled and they couldn't handle the masses.
And as far as training goes, yea it was somewhat complicated for me to learn, but dialysis is life or death matter, so I learned it because I wanted the best for my husband. Its a No brainer, IMO. And Ill say again, I am not an educated or book smart person! If I want to do something, I learn it by doing it, instead of learning to do it.
Iam so proud of all the young people on D. that have realized the true value of doing it at home. They can control their care. Some are so vibrant with activities, it just simply amazes me. But more importantly, the older folks who are going to Home Dialysis. It is much harder for us, cause the ole brain don't work like it use to. But we are just stubborn enough to want to do it at home, cause that is where the Heart is. Plus, "We get better Dialysis".
I know there are alot of people in those clinics, that simply like it done by someone else and really do not have a problem with the 3 day wk. Hopefully, I pray, that you are watching your intakes on off days.
I totally agree, DD, that statement upset me too. Arrogant Ass!
lmunchkin
:kickstart;
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No one cares about people on dialysis. There is no modicum of human compassion left in this country. In this land of rugged individualism, if you are sick, you die because keeping you alive and well is too costly to those who are fortunate enough to be well.
This mindset is becoming more and more entrenched in our society.
I give up.
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I wish Neil would agree to let me dialyze him at home....I know 3 days a week is not enough....
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The day they tell Otto he has to do 5 days a week again, I need to be across the country ;)
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If nephrologists know Dialysis three days a week is not sufficient enough,
and patients know it is not efficient enough,
and a study proves that it is not good enough,
why is the life of kidney-patients on Dialysis not better protected ?
Could it be that having Dialysis at a Centre more than three times a week is too expensive ?
Why are doctors against everyone having a chance to have Dialysis at home ?
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oh man, that is super scary. I am thanking my lucky stars that my hospital allows me to order whatever supplies (within reason) I need; i've been taking advantage of that and ordering supplies for doing hemo 7 days a week.
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If nephrologists know Dialysis three days a week is not sufficient enough,
and patients know it is not efficient enough,
and a study proves that it is not good enough,
why is the life of kidney-patients on Dialysis not better protected ?
I think you know the answer to this.
Could it be that having Dialysis at a Centre more than three times a week is too expensive ?
I told you that you already know the answer!
Why are doctors against everyone having a chance to have Dialysis at home ?
There are probably a myriad of reasons, some being:
1. The patient may have too many co-morbidities to safely do dialysis at home
2. The doctor in question may not have the experience to judge the efficacy of home dialysis, especially home hemo
3. The doctor may not like relinquishing control to the patient
4. The clinic may lack training facilities and personnel
5. The clinic may presume that home dialysis robs them of profit
6. The neph/clinic may not put the patients' interest first (oh, surely THAT can't be so!) ::)
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I'm happy to be lined up to start NxStage training in a couple of days.
Based on how crappy I feel after in-center dialysis, being reminded that the outcomes are poor is no surprise.
With the pressure on the Federal "budget [sic]" these days, increasing spending on additional days per week for us dialysis patients will be challenging to say the least.
---Dan
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I don't do home hemo because I don't know anyone to be my partner and I can't do it alone cause I can't see so I don't think I better try my luck at it, lol.
My former center wanted me to only do twice a week cause I was the only one that worked there and I was always the last patient out of there, they just didn't wanna stick around.
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I don't do home hemo because I don't know anyone to be my partner and I can't do it alone cause I can't see so I don't think I better try my luck at it, lol.
My former center wanted me to only do twice a week cause I was the only one that worked there and I was always the last patient out of there, they just didn't wanna stick around.
You shouldn't be penalized for having to get your dialysis in a center. It's just not right that for people to get enough dialysis, they have to get it at home. You should be able to get good, optimal dialysis in a center, period.
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Dannyboy, glad to hear you are going NxStage!!!! Caution to the wind though, Do not argue about the 6 days a week. You will see a huge difference in the way that you feel. You will be in control of your own care (and that is so freeing). After awhile of doing it and you get yourself to feeling better, you can do the days you want! You will be able to pattern your days to your needs, not incenter!
Im happy for you! You know, I have never decreased the 6 day supplies with NxStage. You never know, we might have to go back to 6 and that is fine with me!
Sullidog, its sad that you have no family members or a good friend to come and help you with Home D. I understand your fears, but don't let them do you just 2 days a week! That is asking for it. Demand your full treatments
lmunchkin :kickstart;
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If nephrologists are of the opinion that Dialysis-patients would benefit greatly
from more Dialysis-treatments each week,
why haven’t they joined together in one voice to appeal to governments
and organizations like the United Nations and the World Health Organization ?
Also, why isn’t it loudly reported by kidney-related-Organizations/Charities,
with articles written in their magazines and on their websites ?
I find it quite frightening that people’s lives may be cut short
because they do not receive enough Dialysis-treatments each week.
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kristina, those questions have been asked for a long time now, and the answers are usually bound up in economics. There are many papers written on this subject, and here is one that you might find interesting.
http://ndt.oxfordjournals.org/content/26/4/1128.full
It's a bit long, so I'll just post the link. It is easy to read, though.
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I switched centers, and don't have that issue anymore.
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This drives me NUTS!
Since 2001, when I first advocated for a Bill H.R.1759 to pay for more frequent dialysis, I have pointed to study after study showing that the two days off correlate to increased hospitalizations and deaths. This is entirely in the power of renal administrators to fix. All they have to do is stay open seven days a week and provide every other day schedules. There is nothing stopping this but the imagination of administrators.
I am at a loss to explain why this isn't being done, but I suspect that the power of the business model enabled by the conventional dialysis schedule is more powerful than any study showing material harm to patients.
I think part of it is uneducated patients, too. Lots of them don't understand what shorter run times and insufficient days are doing to them. I don't see the centers going out of their way to educate anyone on that, either. If I hadn't been on here, I certainly wouldn't have known. Most patients want to fight for shorter run times, just thinking they want less time in the chair. When I had to quit NxStage and go back to in center, I went to a different branch of my clinic, which was closer. (They didn't have openings the first time around.) My new nurses were shocked to hear me refuse to shorten my time from the max allowed, which was 4 hours. They had NEVER had another patient ask for MORE.
Nothing like being the Oliver Twist of dialysis.
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That's exactly why I'd like to go on PD but my stupid center won't listen. The nef there keeps saying, "Get a transplant."
Well, I would but Transplants R Us are fresh out.
I feel the need to scream heRE and say, YOU ARE THE BOSS!!!! THIS IS YOUR BODY, YOUR HEALTH!!!!!!!
if your doc won't listen, you switch and find someone that will!!!!
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kristina, those questions have been asked for a long time now, and the answers are usually bound up in economics. There are many papers written on this subject, and here is one that you might find interesting.
http://ndt.oxfordjournals.org/content/26/4/1128.full
It's a bit long, so I'll just post the link. It is easy to read, though.
Thanks MooseMum, very much appreciated.
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Sadly, since 1973, it has not been about patient outcomes, but Large Dialysis Organization profits as Dr. Scribner and Dr. Blagg have testified for years. They went from home hemo 24 hours or more a week for $7000 a year, to less than 12 hours in-center for $29,000 as noted in Richard Rettic's reviews of dialysis in the 70's. Tell me how that happened by congressional approval?
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I must say that hearing this does not make me very happy. I really want to be around for quite a while more. And I am a Mon-Wed-Fri! Lord, help us!
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I am currently on a M/W/F schedule, I work full time 7am - 3pm, dialysis 4pm-8:30pm. Saturdays, I am recovering, Sundays are my best days and Mondays I am playing catch up again, exhausted and ready for bed by 10am. Although I would hate to do it, I would rather be dialyzed 4 days a week vs. three.
:urcrazy;Iwannabean
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No one wants to be stuck on a machine for more hours than is absolutely necessary. Dialysis is not fun. Most people hate every minute of it, so to even contemplate EXTENDING the time on dialysis can be horrifying. But at the very least, patients should KNOW the pros and cons of every modality, and patients should then make their choice. We gripe about dialysis being too "cookie cutter", and the only way to combat that is to think very carefully about whether the dialysis we are getting is the best treatment. Do you want the best treatment? Do you want the best medicines, the best medical staffs, the best weapons against your disease? No one, and I mean NO ONE really thinks that thrice weekly incenter D is "the best" dialysis, but that is what most of us are offered by people who don't really sit down with us and tell us there are other ways of doing things.
I remember how my mom and I exulted when she was told she should shave off 15 minutes of her time at the clinic. OK, so I was stupid back then. She should have refused, but we didn't know the consequences. She was offered nocturnal by a nurse they brought in to start up a nocturnal program, but the head nurse nixed it, and I'll never know why. I'm convinced that her congestive heart failure could have been avoided if she had received MORE dialysis, not less. What I wouldn't give to have the opportunity to do that over again. I would have pushed the clinic for an explanation.
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when I started in center I was doing three hours three days a week.... I felt great.... compared to when I wasnt doing dialysis.... they tried to get me to do 4 hours in center and I refused... knowing that I was going to start training for Nxstage and doing it at home..... in three months I started Nxstage and was doing short daily and doing 2.5 hours a day using 20L.... after three weeks I did not feel good.... I felt better in center doing the three hours three days a week... I suggested that I run with more dialysate...and got them to agree to letting me do 30L.... and of course that extended my time cause of the amount of dialysate.... I went to 3.5 hours.... plus I slowed my speed down because I was concern about pressures.... they were too happy about that as they thought I should run 430 blood flow speed... I want to run 380 to keep my pressure down and keep the alarms at bay.... I found that running at high flow rates would give me too high of pressures and I would have to hold my body and arms completely still ... That was not fun .... I like to do things while do dialysis..like computer, crafts or what ever....I was doing short daily six days a week.... that was very hard to do everyday....4 to 4.5 hours a days with the decreased blood flow speeds.... Then going to nocturnal and doing 7 hours at 300BS and sleeping while I was do dialysis was just the ticket..... not only did I free up my day but I didnt have to sit there every day for hours.... its hard for me to sit.... I dont know how you people do it .....
If I had to go back to dialysis I would have to insist that I do it nocturnal again..just so I didnt have to sit all those hours... sitting all those hours makes a person want to do less...it hard very hard to sit there... I dont think I could.... its so depressing. so controlling..so hard on the body to not move around....
Even though more dialysis is better getting people to want to do more and having them sit there longer is something that I dont think most people would want to do... its so hard to convince people that more dialysis is better.....
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The bottom line is that normal kidneys work around the clock, a little at a time and at just the right speed. When normal kidneys are working as they should, we feel good. When we have to use artificial kidneys, we have to make a choice regarding how closely we are willing to have that artificial kidney match what normal kidneys do, and whatever we decide, we have to understand the consequences of those decisions. We are the ones having to live with our choices. The problem, though, is that most of us don't have many choices.
I, too, don't like the idea of sitting for 4 hours each day while dialyzing; that just sounds sedentary and unhealthy from the get go. And that's why, like you, tyefly, I am going to be working toward nocturnal home hemo. I am just hoping that I don't have to fight too hard to get what I want.
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It's well-known that the French invented the metric decimal-based system just after the French Revolution in 1789. What's less known is their invention of the revolutionary calendar, also based on decimals. This calendar died some 14 years after its initial adoption.
ESRD patients would have got on well with the Revolutionary calendar. A week lasted 10 days, so all could be dialysed every other day without a glitch at the weekend. Moreover, there were ten hours in a day, so patients would get their full dialysis after only 1⅔ hours instead of 4. :laugh: All months had 30 days, so the day of the week occurred on the same day of the month for every month.
Today is Quintidi 5 Vendémiaire CCXX
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I like the fact that it is our choice! If hubby wants to lay down and Dialysis, he does. If he wants to sit, he does that too! He will sit up and eat and then sometimes he will lay down and nap. I never really thought that was a problem with Home D. just In-Center! The nocturnal is what I can not do for him, because of my job. I don't think he wants it anyway, cause when he did PD with cycler he never rested well.
lmunch :kickstart;
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I TOTALLY AGRRE WITH THE PREVIOUS SPEAKERS. THE 3 DAYS SCHEDULE IS NOT ENOUGH FOR PEOPLE IN DIALYSIS. DIALYSIS TREATMENT HAVE TO LOOK LIKE THE NORMAL KIDNEY OPERATION. THIS MEANS THAT A KIDNEY PATIENT SHOULD HAVE A 7 DAYS DIALYSIS PROGRAM FOR 3.5 HOURS. CAN YOU IMAGINE STH LIKE THIS? FIRSTLY THE STATES AND THEIR CITIZENS WHO PAY TAXES CANNOT AFFORD THIS COST. MOREOVER IT 'S DIFFICULT FOR HUMAN VESSELS AND CIRULATORY SYSTEΜ TO ACCEPT THE USE OF A "PERMANENT" PUMP OF DIALYSIS MACHINE.
I AM SO GLAD THAT ONLY 3 TIMES/WEEK PER 4 HOURS DIALYSIS ARE ENOUGH TO COVER MY KIDNEY FIALURE. 30 YEARS AGO DIALYSIS PATIENTS HAD TO FOLLOW A 3 T/W PER 12 HOURS PROGRAM AND THE DIALYSATOR HAD THE SCHEME AND DIMENSIONS OF A BED.
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Mamba, I don't know how things go in Greece with the D. clinics, but the majority in the US are pitiful. If you prefer the 3 days vs everyday, that is your choice, but mine is to do it at home 5-6 days a week. I can see a significant differents in my husbands health, that was not reflective in his In-Center experiences. That was our choice!
And we just love to be within our home surroundings rather than a group of chairs with people strapped down! The rules in Greece for In-centers may be better than in America, because they don't allow these people to do much of anything while Dialysising. Can't even allow family members to sit with the loved ones! That was always hard to swallow, cause I wanted to be with my husband and Vise versa!
Im glad that 3 days a week works for you, it just didnt for us! There are lots of people on IHD that still do In-Center! It is a matter of choice! We just love the home experience.
God Bless,
lmunchkin :kickstart;
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And we just love to be within our home surroundings rather than a group of chairs with people strapped down!
Im glad that 3 days a week works for you, it just didnt for us! There are lots of people on IHD that still do In-Center! It is a matter of choice! We just love the home experience.
God Bless,
lmunchkin :kickstart;
MEEEEEEE TOOOOOOOOO!!!!!! I can't even stand the smell of my center!!!!! and I feel so much better on PD!!!!! I love it!!!!!!!!!!
I hope I NEVER have to go back to In-center Hemo!!!
There sure is no place like home when it comes to dialysis!!!!!!!!!!!!!