Civil Rights and Kidney Dialysis

[JaeCie]

Also, remember home dialysis is a viable option - both hemo and peritoneal. This eliminates any issues one may have with the centers and put the responsibility for one's health on one's self which is usually a good thing. 

[Simon Dog]

Also, remember home dialysis is a viable option - both hemo and peritoneal. This eliminates any issues one may have with the centers and put the responsibility for one's health on one's self which is usually a good thing. 

You still have to deal with the home therapy support RN at the center, but the person who gets that job (centers that support home protocols usually have just one such person) is generally the cream of the crop.  The great thing is that you get to be your own tech.

[JaeCie]

Exactly Simondog and anything that reduces stress and discomfort increases the likelihood of adherence to dialysis.

[Simon Dog]

Exactly Simondog and anything that reduces stress and discomfort increases the likelihood of adherence to dialysis.

Absolutely.  Although dialysis sucks, I look forward to my treatments as I consider it resetting my death clock by 2 days.

[JaeCie]

Exactly . . . we all know it only takes a couple missed sessions and it's bye bye world. . . Keep going my friend. If you would like to receive a support bag, message me with your mailing address and I will send you one. My Foundation provides them free to dialysis patients.

[Simon Dog]

Exactly . . . we all know it only takes a couple missed sessions and it's bye bye world. . . Keep going my friend. If you would like to receive a support bag, message me with your mailing address and I will send you one. My Foundation provides them free to dialysis patients.

Thanks for the offer but I have thus far avoided the need for any "support" from anyone other than my family, clinic and insurance company.   I still work full time so I don't need to sponge any freebies, and would prefer you send them to someone not in a position to provide themselves with whatever goodies will make dialysis go a bit easier.

[JaeCie]

Exactly . . . we all know it only takes a couple missed sessions and it's bye bye world. . . Keep going my friend. If you would like to receive a support bag, message me with your mailing address and I will send you one. My Foundation provides them free to dialysis patients.

Thanks for the offer but I have thus far avoided the need for any "support" from anyone other than my family, clinic and insurance company.   I still work full time so I don't need to sponge any freebies, and would prefer you send them to someone not in a position to provide themselves with whatever goodies will make dialysis go a bit easier.

Simon Dog,
I am thrilled to hear that you have been able to get the support you need. Does your dialysis center also provide goodies? I know different providers have different practices.

[Simon Dog]

Simon Dog,
I am thrilled to hear that you have been able to get the support you need. Does your dialysis center also provide goodies? I know different providers have different practices.

I got a little flashlight at Valentine's day and a hat/glove/scarf set at Xmas, but other than that it is pretty much just business.

[plugger]

Nice to see people helping themselves as much as they can!

Anyway, this week's show had special guest Chili Most; he is known for his music such as "Fight_for_your_Rights", his involvement in the "Stop_the_Violence" campaign, and his work for musical artist James Brown.

Chili Most has been helping  Arlene_Mullin with media appearances across the country on behalf of dialysis patients.  Subjects touched on were organizing, how staff will ignore patients when unhappy, again: the importance of documenting AND GETTING YOUR FLOW SHEETS, a comparison to modern slavery, sticking together, not signing anything while on the machine, one patient stated how a person can report problems to the Medical Review Panel and the Schumacher? Group besides Dialysis Advocates, also there was a question about open and gravity feed systems, etc...

This week's show
http://www.blogtalkradio.com/dialysisadvocates/2014/02/07/dialysis-talk-chili-most-speaks

Latest shows
http://www.blogtalkradio.com/dialysisadvocates

[ianch]

Can a non american be controversial for a moment, why do you need all these centres in the first place. What if just for fun we rate all US patients by New Zealand, Australia, or Canada policy. What percentage would be fit for home care that are not in home care,  and does this not result in enough savings for the rest?

In centre is the most costly of all dialysis and should only be available to those in need of addtional care. Why waste nurses, doctors, a bed, for me when that cost should go to a very ill person.  In NZ only hospitals provide in centre and those are all public.  Its expensive at $164 US per hour in NZ. At 636 standard HD hours per year thats $104,000 just to run the machine. 

So why can I do 2100 hours per year and it only costs $11.48 per hour or $24,000 per year.  Its because I choose to get the out of what im provided.  Most home dialsys patients here do 1272 hours per year and it costs $19 per hour.

So there is your savings and everyone wins. The state wins financially, and so does the insurance co, the patient wins as more hours means better health. There will be less doctor visits.

I see my doc every 6 months. My techician is an email or phone call away and has 30 patients like me.

Private centers are only there for profit and unless offering extended they are not in it for you.  Imagine incentre extended at $1312 per session.  Wow I can do it for $91.84 plus power and water

[jeannea]

It's not that simple. Anyone who lives in a nursing home has to go in-center. The nursing homes are not set up for home dialysis, esp storage but also any assistance needed. Here almost no clinics will allow home hemo without a care partner who trains with you. I live alone so it wasn't an option for me. I did PD at home but a lot of people don't have storage room. Medicare rules do not allow us to go 6 months between doctor visits.

Do they limit who may be on dialysis in NZ? I know so many who are on dialysis who are not capable either physically or emotionally of doing their own dialysis.

I understand the numbers and the cost. I just know it would take a huge culture change here.

[obsidianom]

Home hemo requires a lot out of patients physically and mentally. Many just cant do it. I am a big fan of it but realize many cant do it.

[ianch]

Absolutely agree with whats been said.  Its a massive change for the US.  I never said all patients only those who were assessed as potentially independent, and that should require a home review as it does in NZ.  They are very comprehensive in their checks, but we do allow self care.  To answer directly, a nursing home patient will always be in-centre.  The level of dialysis will relate to several conditions and some may only be on maintenance (once per week) if they are totally bed ridden.  The mortality rate for in-centre is remarkably short as compared to home PD or hemo, however in NZ most of that statistic is probably tied up in the fact younger patients either never see a hospital bed (as they are home trained before needing dialysis) or like me they see 1 year until stable enough to leave.

As far as I know there are no PD units other than for home training in NZ, and some emergency hospital units for in-patients. As for hemo, before 2009 there were only 2 units across our 9 regional cities.  Those 9 have been combined into 1 super city and in my area of that (north) since 2009 1 public centre has been built and one more goes live next month, but its main function is a home training unit.   That's all we have, and good luck if your in the south island where the land is vast and population low so in-centre services are unaffordable outside the main cities. 

As a state funded health system we keep it lean and mean, and basically that's great for people like me. My life expectancy was 7 years in-centre and now jumped to 25 based on our model. 

All I'm saying is that cutting cost is a reality for all western governments as many of us are living un-subsustainably.  But that does not mean people on dialysis need to suffer.  We just need to think outside the box and make it happen.  If smaller countries can do it then there no excuse for a big ones with significantly more resources.       

Fresenius has centres in the US, and also one in Auckland, but in my discussions with them on portability they were not overly happy with business - why, cause there isn't any.  The public system is very efficient at managing this resource hungry and expensive disease so only a handful of tourists (probably with medicare) keep the unit afloat.

Looking at the current US medicare and Social Security liability, I'd say its in every patients interest to change the system.  We (as dependent on machines) are very exposed to environmental shock. I know my risk profile - I live in a city of 56 extinct volcanoes, in a country that suffers from over 400 earthquakes every week.  There is no where near enough hospital machines for every patient in the event of a crises.  That's why I'm putting in backup water and generator as insurance, because lets be honest I am liability and in the event of an infrastructure or financial meltdown I'll be forgotten.