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Author Topic: Good News?  (Read 1665 times)
Rerun
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« Reply #25 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;
« Last Edit: July 14, 2019, 09:41:02 AM by Rerun » Logged

lulu836
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« Reply #26 on: July 14, 2019, 10:26:35 AM »

I'm for advances, I just want them thoroughly tested and to recognize all different patients.
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« Reply #27 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!
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MooseMom
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« Reply #28 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.

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« Reply #29 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 dont 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 dont 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 save 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 Id 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.
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« Reply #30 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.   

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MooseMom
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« Reply #31 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?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #32 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.
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« Reply #33 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.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #34 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.
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Rerun
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« Reply #35 on: July 16, 2019, 09:10:42 PM »

MM I like your commercial or PSA....

   :rofl; :rofl; 
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Alexysis
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« Reply #36 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.
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GA_DAWG
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« Reply #37 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.
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iolaire
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« Reply #38 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. 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.

* Im 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 for example feel school children healthier food so they have the choice of healthier or healthier.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #39 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.
« Last Edit: July 19, 2019, 06:36:46 AM by plugger » Logged

Proud member of DialysisEthics since 2000

DE responsible for:

*2000 US Senate hearings

*Verified statistics on "Dialysis Facility Compare"

*Doctors have to review charts before they can be reimbursed

*2000 and 2003 Office of Inspector General (OIG) reports on the conditions in dialysis

*2007 - Members of DialysisEthics worked for certification of hemodialysis
technicians in Colorado - bill passed

*1999 to present - nonviolent dismissed patients returned to their
clinics or placed in other clinics or hospitals over the years

On my tombstone: He was a good kind of crazy

www.dialysisethics2.org
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« Reply #40 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.
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GA_DAWG
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« Reply #41 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.
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