I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: plugger on July 10, 2019, 08:47:02 AM

Title: Good News?
Post by: plugger on July 10, 2019, 08:47:02 AM
This looks like good news?

"President Trump is set to sign an executive order later Wednesday morning that is also designed to move many of the more than 500,000 people receiving kidney dialysis away from commercial centers to less expensive in-home care."

https://www.washingtonpost.com/health/trump-to-order-overhaul-of-organ-transplant-and-kidney-dialysis-systems/2019/07/09/6fa803d0-a1c8-11e9-bd56-eac6bb02d01d_story.html?utm_term=.e3a72443b9a0 (https://www.washingtonpost.com/health/trump-to-order-overhaul-of-organ-transplant-and-kidney-dialysis-systems/2019/07/09/6fa803d0-a1c8-11e9-bd56-eac6bb02d01d_story.html?utm_term=.e3a72443b9a0)
Title: Re: Good News?
Post by: Rerun on July 10, 2019, 10:09:33 AM
Awesome! 

   :waving;     :yahoo; 
Title: Re: Good News?
Post by: Charlie B53 on July 10, 2019, 04:37:34 PM

While the intentions are good I have to remember how badly the Government screwed up what used to be a very simple gas can.
Title: Re: Good News?
Post by: iolaire on July 10, 2019, 05:01:10 PM
Someone quoted in the story said their family was not offered home treatments. As far as I know itís now mandated by Medicare.
Title: Re: Good News?
Post by: Simon Dog on July 10, 2019, 05:20:32 PM
less expensive in-home care.
Key is "less expensive" - though it is billed to the patient or patient's insurance at the same rate.

Funny the order didn't get into "imminent death" donation.

Quote
Someone quoted in the story said their family was not offered home treatments. As far as I know itís now mandated by Medicare.
It could have been ignorance on the part of the MD or a well-reasoned judgment that the patient was not a suitable candidate for home treatment.

From what I have seen of in-clinic patients, it's going to be hard to get the transplant or home treatment ratio up to 80%.  One RN at the clinic told me "look around, there aren't too many of you people who can take care of themselves here" ... and he was referring to general self care, not running a dialysis machine.
Title: Re: Good News?
Post by: iolaire on July 10, 2019, 05:46:35 PM
Yes Simon Dog. I know other countries have much higher home treatments I wonder how they manage that for people who have challenges or people without help.

My worry is this could be the start of the end for Medicare for All dialysis patients
Title: Re: Good News?
Post by: plugger on July 10, 2019, 06:27:55 PM
It was encouraging to see the HHS Secretary Alex Azar has up close and personal experience with his father being on dialysis.  And from his wiki page I see he was confirmed twice by the Senate unanimously for the Deputy Secretary of Health and Human Services (at least both sides liked him then).  I would guess he was the one who really pushed Trump to do this and maybe Trump has pulled a Nixon on us, when Nixon did the right thing and signed the bill to start the ESRD program in '73.

But I did see a red flag with how they are pushing peritoneal dialysis, recall that can have a problem with infections. Is the technology better now? Is my memory exaggerating the problem with peritoneal?
Title: Re: Good News?
Post by: Rerun on July 10, 2019, 09:30:23 PM
Just remember to use a clean towel every time you shower.  No hanging it up for the next time.  Also put some white vinegar in you wash to disinfect the towels.  If you have white towels use a little bleach.  Just a couple of tips.

We'll see.  It is just nice to be on President Trump's radar.  He is doing more than he promised.

 :thumbup;
Title: Re: Good News?
Post by: Simon Dog on July 10, 2019, 10:22:45 PM
I suspect a big part of the push for PD is that it can be easier to train a patient to do the hookup than it is to teach someone how to start their own IVs and monitor all aspects of a hemo treatment.   
Title: Re: Good News?
Post by: Rerun on July 11, 2019, 06:03:20 AM
President Trump is also pushing for an Artificial Kidney.   BOOM Done!   Finally! 

   :bow;   :waving; 
Title: Re: Good News?
Post by: Alexysis on July 11, 2019, 11:19:30 AM
I certainly hope it isn't going to be a policy where people all have to go on PD first. I have polycystic kidneys, and I am a very poor candidate for PD. I would need to do overnight as well as 2 or 3 changes a day! How do you manage that AND hold a job? Also, I'm really not able to self-cannulate, nor is anybody else at home. I really don't see how home-based dialysis is an option for me unless they send a nurse to my home 3x a week to put the needles in.
Title: Re: Good News?
Post by: lulu836 on July 11, 2019, 01:04:01 PM
I feel the same.  :thumbdown;  I seriously doubt I will live until 2030 and I'm not convinced any of them have thought this  out
Title: Re: Good News?
Post by: Rerun on July 11, 2019, 02:11:50 PM
This won't help me either.  But after 33 years I'm thrilled that maybe my great nieces and nephews, cousins or anyone else related or non-related has to go through what I've had to endure.  An artificial kidney would be great.  I hope? 

At least we are being noticed as an area that is stagnant and needs a kick in the pants to get moving on Something! 

Title: Re: Good News?
Post by: rcjordan on July 12, 2019, 07:54:59 AM
>"look around, there aren't too many of you people who can take care of themselves here"

I'd be shocked if the program adds a significant number of patients to the HHD rosters.  The combined requirements for technical capabilities, a dedicated caregiver/cannulation, supplies storage, and trash disposal really add up to be a formidable barrier.
Title: Re: Good News?
Post by: fightingPKD on July 12, 2019, 01:14:17 PM
Honestly, if this helps anyone to any degree then despite what I think of him otherwise, I will applaud his efforts here.
Title: Re: Good News?
Post by: Alexysis on July 12, 2019, 02:11:44 PM
President Trump is also pushing for an Artificial Kidney.   BOOM Done!   Finally! 

   :bow;   :waving;

Well, his artificial hair seems to be working for him. He's probably waiting for somebody to come out with an artificial wife as well.......

BTW, I'm assuming this is partly due to detract attention from Melania's month-long absence for a "kidney procedure". I mean, we all suspect it was really for plastic surgery........
Title: Re: Good News?
Post by: Alexysis on July 12, 2019, 02:13:37 PM
I feel the same.  :thumbdown;  I seriously doubt I will live until 2030 and I'm not convinced any of them have thought this  out

Considering the source, you KNOW they haven't thought this through!
Title: Re: Good News?
Post by: Michael Murphy on July 13, 2019, 05:21:24 AM
Just remember trumps record on medical issues, he boasted his aca replacement would be the best insurance ever, it would have raised my total insurance cost from 370 dollars a month to 1850 a month (it would have allowed insurance companies to raise rates 5 times current charges for anyone over 65) . Then it would have reinstated the preexisting condition ban.  Both would be a death sentence for me canít afford it canít change companies.  Thank God McCain voted it down.  Recent stories have trump of trying to impose a life time cap on benefits.  Young on dialysis run out of benefits tough luck.  Diabetic your insulin prices are going through the roof despite White House promises has any thing been done nope.
Title: Re: Good News?
Post by: rcjordan on July 13, 2019, 06:03:15 AM
After reading a few articles, the emphasis regarding home treatment seems to be on PD.
Title: Re: Good News?
Post by: plugger on July 13, 2019, 06:39:43 AM
Just remember trumps record on medical issues

As I told a couple of skeptical friends, I'm hopeful but wouldn't be surprised if it all goes south.  Right now to keep my spirits up I'm trying the mantra: "But Nixon started this thing", "But Nixon started this thing"...
Title: Re: Good News?
Post by: GA_DAWG on July 13, 2019, 07:57:24 AM
I would certainly hope anything would promote the development of an artificial kidney, though I also know how long that has been sought with an artificial heart. Aside from that, anyone who thinks this White Houe is in anyway concerned with helping anyone other than themselves is deluded. One need only look at their replacement plan for the ACA that would have kicked 20 million people out of healthcare in one fell swoop to understand that. I also do not support the Medicare for all proposals, but think a public option into which people would pay their premiums, for those who can, should be implemented. The fact that Medicare and Medicaid can operate on 3% overhead while private insurance claims to need 35% tells all that is needed.  There are far too many who are not considered candidates for transplant or PD. There is no mention of what they are supposed to do.
Title: Re: Good News?
Post by: Alexysis on July 13, 2019, 09:39:11 AM
Just remember trumps record on medical issues,......

Yeah, like that he weighs 239 lbs?
Title: Re: Good News?
Post by: plugger on July 13, 2019, 09:56:32 AM
After reading a few articles, the emphasis regarding home treatment seems to be on PD.

I can only hope our friends at Home Dialysis Central (https://www.homedialysis.org/) are involved in this!  Over the years this is the place I would go when I had technical questions about dialysis - not just home dialysis.
Title: Re: Good News?
Post by: Rerun on July 14, 2019, 07:51:15 AM
Well, with all the negative thoughts here.....  It probably won't happen.   Thanks.  I hope you all have a better day.
Title: Re: Good News?
Post by: lulu836 on July 14, 2019, 08:21:23 AM
Well, with all the negative thoughts here.....  It probably won't happen.   Thanks.  I hope you all have a better day.

Rerun.......I don't mean to be negative but as you well know everybody has their own "stuff" to watch out for.  In the sunset stage of my life  I have been declared a "brittle" patient and am disallowed from any more surgery of any kind.  So, I have to stay with the catheter (which everyone who doesn't have one despises).  If an improvement comes along in any dialysis or kidney disease procedures, I am all for it......just not for me.  As I've said before, dialysis grabbed me really, really late in life and before that happened I was extremely active and loved every minute of it.  I'm I'm still enthused about Life but just a little bit quieter about it.
Title: Re: Good News?
Post by: Rerun on July 14, 2019, 09:14:30 AM
LuLu  I'm not interested an any of the new and upcoming things either.  Dialysis grabbed me EARLY in life. I was 25 and now I'm 57.  But, I'm still behind any President that tries to put Kidney Patients on the forefront.

What I'm reading here is:  I hate Trump so I don't want anything he offers.  That is the Derangement Factor at play.

Another thing President Trump did was the "Right to Try".  Experimental drugs or treatments that are actually helping people can be continued for those patients if they want to.  Instead of pulled until the FDA gets around to approving them years later.

Should this thread be moved to political?  You guys decide.  Because If I have to move it the gloves come off.  I'm being nice so far.   :waving;
Title: Re: Good News?
Post by: lulu836 on July 14, 2019, 10:26:35 AM
I'm for advances, I just want them thoroughly tested and to recognize all different patients.
Title: Re: Good News?
Post by: plugger on July 14, 2019, 11:23:27 AM
I will say if the mantra I mentioned doesn't work for a person, they might try to concentrate on the fact Mr. Azar is the HHS Secretary.  Indications I'm seeing so far seem to be that he might be pretty darn competent - and as I've mentioned he has had skin in the game.  Thinking about those two things seem to be raising my hope level day-by-day.  I look forward to it continuing!
Title: Re: Good News?
Post by: MooseMom on July 14, 2019, 01:17:54 PM
I'm very interested in how the HHS is proposing to expand care to those who might be most at risk of developing ESRD in the first place.  We all know that untreated diabetes and hypertension are overwhelmingly the main causes of renal failure, and if we can cut these numbers significantly, then we can reduce the number of people who will ever need a transplant in the first place, making more organs available by default.  I am eager to see what kind of educational program they may be considering and how will they implement it.

After educating people, the next thing that will need to be done is to make sure everyone has access to regular checkups, which means something will have to be done about the health insurance issue.

I am comforted by the fact that Mr. Azar has seen for himself the ravages of ESRD, but it concerns me a little bit that he has been a lobbyist in his day.  To be fair, though, being a lobbyist doesn't have to be a bad thing, I suppose.

Title: Re: Good News?
Post by: iolaire on July 14, 2019, 01:44:25 PM
What I'm reading here is:  I hate Trump so I don't want anything he offers.  That is the Derangement Factor at play.
Rerun I hope you too are having a good day.

I donít read that in the announcement. I read people wondering what it means and being a bit skeptical of it.  And some who sound excited.

Most of our medical history with trump is his efforts to remove access to healthcare for Americans so I feel skepticism is important.

If there is change we will need help from all our elected leaders to make sure we donít loose the huge benefit all dialysis patients have with the access to dialysis.

Our treatments are at huge cost to the taxpayers so it would be easy for non compassionate politicians to try to harm our medical care to ďsaveĒ Medicare or for some other made up reason.

Now some countries make home care work. I know New Zealand has lots of in home treatments but Iíd guess that also needs a large amount of home care for treatments. Maybe that would work here but it would be a large change. And obviously the dialysis lobby will do their best to protect their income stream.
Title: Re: Good News?
Post by: Rerun on July 15, 2019, 07:56:01 AM
President ended the Mandate.  Forcing people who can't afford the premium which kept going up to pay or be fined..  Forcing people who didn't pay up.... then forced to pay a fine which kept going up.   Good for Trump.  Anyone who goes to the ER still gets seen.  So everyone still has health care.  And if I go the to ER I have to stand in line even though I DO have health insurance. 

I have a friend who has health insurance and a job who has been warned and warned that he has pre diabetes.  He panics for about a month and is back to his old eating habits.   They could mail him a pamphlet every day and he would not change.  Maybe a shock collar would help.??   Education only goes so far and then a person takes their own path of destruction. 

Do we limit the drink sizes?  then we out smart government by ordering 2 drinks.  Addiction takes over our lives no matter the education.  Look around.  It is not just Rx drugs that ruin lives it is the very thing you WANT to put in your mouth.   

Title: Re: Good News?
Post by: MooseMom on July 15, 2019, 11:39:24 AM
Rerun, I know you are trying to keep politics out of this discussion so that you don't have to move it, and that's why I am not sure what you are trying to say in your most recent post.

I think Sec. Azar is right to try to educate people.  Just because some people are determined to live in denial doesn't mean that everyone is of the same mindset.  Maybe the HHS could buy some airtime for a PSA fashioned after those interminable tv ads about drugs for this, that and the other thing.  Maybe show a man or woman feeding their faces with crap while a voiceover talks about the dangers of diabetes, including renal failure.  At the end, you see said man/woman hooked up to a dialysis machine, and the voiceover says, "Ask your doctor if dialysis is right for you."  The End.  Scare people.  It's true that "education only goes so far", but for many people, that just might be far enough.

Yes, anyone who goes to the ER still gets seen, but that doesn't mean that "everyone still has health care."   If the ER docs diagnose you with renal insufficiency heading to failure, they'll kick you out at some point and you will no longer necessarily have health care.  Suddenly you are faced with an epic chronic health condition and can't keep running back to the ER forever.

I don't know what you do with people like your friend who is eating all of the wrong foods and is making no effort at all.  I don't really have any sympathy for people who can't take responsibility for their own eating habits.  There are people all over the world who never have enough to eat, so I can't feel anything for those who willfully poison themselves with shedloads of edible crap.  But I am not sure it is reasonable to equate bad eating habits to "addiction".  Can someone really be addicted to chocolate cake?
Title: Re: Good News?
Post by: GA_DAWG on July 15, 2019, 08:01:14 PM
I'm wih you MooseMom. I have little sympathy for those who do not try to help themselves. I smoked for many years. I don't expect sympathy or anything else for the COPD I now have. I also do not expect the cigarette companies to pay for it. It was my decision and I was thoroughly warned.As to healthcare, especially for ESRD or other chronic conditions, we need to catch them BEFORE someone goes to the ER. That was the real purpose of the ACA, to make doctors available to the millions who had no coverage. Another plus it provided was ending the junk policies so many insurance companies sold that in actuality covered nothing. Not one move by this administration has been geared towards making it easier or cheaper to see a doctor. They have even opposed, until now, allowing people to import drugs from Canada. I have yet to see anyone get ugly about Trump nor show Trump derangement, but it seems that merely questioning his rationale is cause to stir up those who still believe the guy who has told over 10,000 documented lies since being sworn in.
Title: Re: Good News?
Post by: MooseMom on July 16, 2019, 12:29:20 PM
I had my first tx eval at Rush in Chicago.  Everyone at the clinic was nice, but the conversation I remember the most is the one I had with the surgeon.  My husband was with me and asked some rather useless questions about survival statistics.  (I happen to think those stats are next to useless.)

The surgeon was quite obliging.  He showed us their 1 year survival stats, and they ranked third in Chicagoland.  He explained that the residents in their immediate "catchment area" tended to be people who were lower down on just about every statistical ladder, the result being that many of their renal patients never even knew about the link between diabetes and kidney failure until they showed up in the ER with shot kidneys.

Kidney disease is rife in this country, yet we hear nothing about it.  And I mean NOTHING.  Everyone is out marching for ALS or Alzheimer's or breast cancer or lung disease, but no one is marching for a cure for kidney failure or for better dialysis or organ transplant awareness.  I bet next to no one would recognize a dialysis machine even if it fell on them.

And I'd bet that the vast majority of Americans who have some experience with diabetes are completely unaware that it can lead to a forever date with the big D.

This needs to change.

So even if Sec. Azar is a Trump appointee, I will still support any effort by anyone to raise awareness (I really hate that phrase) and to educate people about this health horror.  I hope he is able to follow through.
Title: Re: Good News?
Post by: GA_DAWG on July 16, 2019, 05:40:40 PM
I agree. I had been through college, a career, and never ever heard about a link between high blood pressure and kidney disease, though to be honest I never felt bad so regular checkups were not a priority, it cut into time I could be working. I never had any idea that high blood pressure ran in the family. I knew about things like heart disease and the like, as you say the "sexy" problems you hear about. Also to be completely honest, aside from peeing, I had no idea all the other things kidneys were responsible for, and nope, not a biology major by any means. I see these commercials for drugs on TV and it seems every other one of them, one of the side effects, is kidney damage and the possibility of being on dialysis. I want to scream at the TV, "don't do it." I hope as hard as anyone for a way to keep people from falling victim to ESRD, and that they learn the things that could help them avoid it, or for an artificial kidney. I don't care who finds the "cure" just that it is found.
Title: Re: Good News?
Post by: Rerun on July 16, 2019, 09:10:42 PM
MM I like your commercial or PSA....

   :rofl; :rofl; 
Title: Re: Good News?
Post by: Alexysis on July 17, 2019, 06:24:34 AM
President ended the Mandate.  Forcing people who can't afford the premium which kept going up to pay or be fined..  Forcing people who didn't pay up.... then forced to pay a fine which kept going up.   Good for Trump.  Anyone who goes to the ER still gets seen.  So everyone still has health care.  And if I go the to ER I have to stand in line even though I DO have health insurance. 

I have a friend who has health insurance and a job who has been warned and warned that he has pre diabetes.  He panics for about a month and is back to his old eating habits.   They could mail him a pamphlet every day and he would not change.  Maybe a shock collar would help.??   Education only goes so far and then a person takes their own path of destruction. 

Do we limit the drink sizes?  then we out smart government by ordering 2 drinks.  Addiction takes over our lives no matter the education.  Look around.  It is not just Rx drugs that ruin lives it is the very thing you WANT to put in your mouth.

If you remember correctly, the 'mandate' was a compromise because on certain party screamed that a 'public option' (you know, just like us ESRD patients and all those over 65 already have....) would send us down the road to (GASP!) Socialism. Yes, anybody who still goes to the ER gets seen.....then we all have to pay for those who are too bull-headed to believe in health insurance, or to budget in order to pay for it. Also, when these people actually get sick, they usually end up declaring bankruptcy, so once again, WE all pay, but THEY end up financially ruined. Yep. great system we have here....

What we REALLY need is a Medicare default; if you don't have insurance, we will put you on Medicare and take payments out of your checks, just like the IRS and Workmens Comp does.
Title: Re: Good News?
Post by: GA_DAWG on July 18, 2019, 09:06:25 AM
We need a healthcare system that focuses on PREVENTING disease instead of one that is geared to TREATING disease. Yes people will still get sick  and there still will be ESRD, cancer, heart disease and all the rest, but if it was cut by 25% it would be a remarkable savings. We also need a syatem that pays for OUTCOMES, as the ACa was supposed to do, rather than the amount of tests run. It is not a hard system to arrange, except for the investment made by those who would lose out, like insurance companies, big pharma, and politicians reliant on campaign contributions.
Title: Re: Good News?
Post by: iolaire on July 18, 2019, 10:30:23 AM
We need a healthcare system that focuses on PREVENTING disease instead of one that is geared to TREATING disease.
Remember how Michelle Obama tried to move the schools to serve healthier food?  If I recall correctly there was huge pushback on that from certain Americans.  Yet healthier food is the first step to PREVENTING our most common diseases.  I really think an alarming portion of the population doesn't want change and would prefer that "someone" else pay for their refusal to change.

"someone" = the tax payers, or other members of your corporate insurance pool, or other patients with corporate insurance etc.Ö as very few people pay for chronic disease treatments without someone else paying.  Including me where I'm happy to be part of a corporate insurance pool and also Medicare.

* Iím a firmly believe now that some people for no reason of their own are predisposed to common bad health choices so we also need some sort of structure that helps those people make good choices Ė for example feel school children healthier food so they have the choice of healthier or healthier.
Title: Re: Good News?
Post by: plugger on July 19, 2019, 06:34:09 AM

What I'm reading here is:  I hate Trump so I don't want anything he offers.
 

I will say I'm thinking skeptics maybe needed to work out the details of this Trump news - for some people it might require taking a hard position at first.  The devil is in the details as they say!  As we go along if we are lucky maybe we will see if the skeptics are being listened to.

And I'll admit I'm no Trump fan, but even I can agree with him on something like tariffs.
Title: Re: Good News?
Post by: rcjordan on July 19, 2019, 10:47:13 AM
My neph thinks it's great. He said that the current system simply does not pay for counseling of early-stage renal failure.
Title: Re: Good News?
Post by: GA_DAWG on July 20, 2019, 09:09:26 AM
The strange part of what Iolaire says about the people who objected to Michelle Obama's attempts to have more nutritious food in schools were the same ones in favor of calling ketchup a vegetable.