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Wednesday, May 31, 2017

Too much power in too few hands - in dialysis clinics as well as our government.

Much of what is wrong with this country right now is due to too much power being in the hands of too few people - or companies.  Companies are free to be more merciless than actual people because, of course, there is no one person (with a conscience we hope) to place responsibility on. So if you complain, or sue, it's "policy" set by the "shareholders" or some "committee" and there is no recourse.  

Corporations wield a disproportionate amount of power in our government.  Their money, one way or another, purchases the representation they want.

Two corporations, DaVita and Fresenius, between them, provide 70% of the dialysis in the United States. 

Back in the 70s a group of physicians, tired of watching their kidney failure patients die for lack of money for dialysis, went to Congress.  Medicaid was expanded to cover dialysis 100%.  I think this needs to be done for every chronic disease, from cancer to fibromyalgia, but please do not hate people with ESRD simply because they do have the near universal medical coverage every single American ought to have. Because there's a dark side to it that I'm about to tell you about.

So - dialysis is big business.  We (via our government) pay about three times as much per treatment in the United States as in any other developed country. The same treatment, with the same machine, the same supplies, as they get in the other countries - generally even from the same two corporations; DaVita and Fresenius.

The care we receive for that big payment is dismal. I am thoroughly disliked at my husband's dialysis clinic, because we monitor every treatment, every change, every prescription.  We ask questions, and we do not hesitate to call the ESRD Network with complaints.  And, of course, you can see there are many blog posts here about the poor care he receives. When I spoke to other medical professionals, other patients and their caretakers, I am told that pretty much all dialysis clinics are the same - or worse.

Part of the reason for that dismal care is that dialysis patients are being treated by people with a high school diploma and a few weeks in clinic training.  They are getting a little bit over minimum wage. They have (maybe) one RN on duty and that one highly trained person is responsible for watching over, well, I don't know how many - 20 or more patients at a time I suspect.  (Yes, it's true that some of the technicians have far more than that basic training, or have come to dialysis from other specialties.  Some of them care deeply about doing their job with respect, compassion and kindness.  Some of them are there for a paycheck.)

Those dialysis technicians work ridiculous shifts.  Most recently, I was given to understand that our techs were scheduled for three 17 hour shifts in a row so that the company would not have to pay them any overtime.  Over the Memorial Day weekend. So we are talking about people who haven't seen their family for three days, who have eaten their meals at the break room table, who have clearly had less than eight hours of sleep - watching over a machine that sucks the blood out of someone and puts it back in - watching over half a dozen or more patients at a time. Sure, they got several days off afterwards - after all, they can't make any overtime! This holiday weekend aside, many times I've been told technicians are work 12 hours or more in a single shift.  They work until 10 pm and then are expected back at 4 am to open for a new day, a new 12 hour shift. In six months, we have seen an incredible turnover rate.  The best techs give out and quit first. This is not a quality lifestyle for anyone!

Not surprisingly, during this holiday weekend, a mistake was made in my husbands treatment.  I complained.  It was corrected at the next treatment.  How many other mistakes were made?  For people whose families don't monitor their treatments as closely?  These mistakes take days off that patients life expectancy.  They cause untold misery.

California has a state bill in process to address some of these concerns.  It would force the clinics to be reasonable about the hours their employees work.  To improve the patient: technician ratio so patients get more of the attention they need. And for more frequent inspections of the dialysis clinics.  Right now, dialysis clinics are inspected less often than nursing homes.

Fresenius and DaVita claim this bill endangers patient care.  How, pray tell, can a more alert, well trained, less stressed out medical technician taking care of fewer patients at one time going to endanger anyone?  Far the opposite I would think.

I tell you what it does endanger.  It endangers the enormous profits these companies are making.  Take a look at their financial reports.  Glance at any stock market website and see what a great investment dialysis companies are.

DaVita has FIRED four employees for speaking out in favor of this bill.  Oh, they claim that these four employees - one of them considered a model employee of 16 years - all suddenly, on the same day, committed something so egregious they had to be fired immediately.  They sure did - they spoke out about what goes on in those clinics.

The patients are afraid to speak out.  They are afraid of in-clinic retaliation.  I can tell you I, personally, have been retaliated against for my constant complaints. My husband lives in fear that the people who stab him with two large needles every other day, who suck all the blood out of his body and put it back - might retaliate against him.

And now the employees themselves will be afraid to speak out.  They see what's going to happen if they do.  They will be fired. Like all of us - they need that job.  Some of them, the best of them, have a great deal of time put into specialized training for their job.  And if they get fired from a DaVita clinic for speaking out, do you think a Fresenius clinic will hire them? Do you think any dialysis clinic will hire them again? So what do they do with all that education - go to work at McDonalds and hope that will cover their bills? No doubt they have a family to support, too.

This is because there is too much power, in too few hands. And the motivation is not care, compassion, or improving lives.  The motivation is the highest profit possible from people's suffering and desperate need.

Speaking as a family member of someone on dialysis - if California passes that bill, we may move to California.

But, really, that bill needs to be in Congress.  That law needs to be a national law.

Adequate medical care is not too much to ask for in this most rich and developed nation.

Nuff said.

Blessedbe

Summer Foovay


Sunday, May 28, 2017

Trump decides to kill the last of our wild horses - and I'm glad

The Washington Post reports that Trump's budget cuts the money for wild horses and changes the law to allow them to be euthanized or sold at auction. Click here to see the video and story.

When I first saw this I was freaked out, angry, depressed, and nearly in tears.

And then I thought about it for a bit.

And now I am glad.

Why?

Maybe you know the story of how the buffalo was saved.  It was not saved by the U.S. government.  It was saved by a handful of ranchers, who saw that the wild buffalo herds were almost gone.  They bought, caught, and gathered all they could and preserved them on their own land.  That's right.  American people saved the buffalo.

It was a good many years later before the zoos, researchers, and government people went "Oh damn, the buffalo are gone! We should SAVE them!" and then those ranchers said, "'Bout damn time.  Here, have a few of mine."

So this bill will allow the unrestricted sale of captured wild horses at auction.  No more adoption papers, inspection, one horse at a time, only once every two years.  All that bereaucratic crap did not keep Mustangs from going to slaughter.  It meant they went to warehousing ranches who got paid to keep them (money), it meant that oddly enough certain people seemed to be allowed to adopt tens or hundreds of horses at once, without inspection, and were unable to prove where those horses were two years later (money). It meant that horses were rounded upon State land, or Forest land, or tribal land, and because it wasn't BLM land those horses could be auctioned off at the public (slaughter) auction to raise money for the tribe or government.

I hope this goes through.  And I hope the horse rescuers, the horse rescue associations, the ranchers and American people who care about wild horses will fundraise and gather up their pennies and get themselves to those auctions.  They only have to bid against the meat man for these untamed animals - so say $1 a pound or less for smallish horses.

And WE will save those wild horses and give them homes where they can live out their lives in freedom or the next closest thing we can provide. 

In fact, my biggest worry is that we can get this done ASAP. 

Because I bet you money that the next step is shooting them from airplanes. Why round them up when you can slaughter them on sight?

Please, please prove worthy of my hopes.

Summer Foovay


Tuesday, May 23, 2017

In clinic Hemodialysis ABUSE - Gaslighting

Gaslighting is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or members of a group, hoping to make targets question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the target and delegitimize the target's belief.[1][2]

Or as I call it - telling lies on me.  This is a form of abuse that can be used by a narcisstic individual - or by a company or organization.

In this case, Fresenius Medical Clinic #4670 in Las Cruces, NM has now done this to us twice.

They changed his appointment time.  They did not inform us of that change.  Because we are consistently EARLY for his appointments - we are actually "on time" for the "new time" which is moved up by twenty minutes or so. Thus it is weeks before we discover we are "always late" - by then they can say "oh, you are ALWAYS LATE." and it is OUR fault (according to them).

Then one day we come "on time" (we think) and are told we are LATE.  This is the first time we are ever informed that our appointment time has been changed.  We are told we are 'ALWAYS LATE' when in fact, our appointment time was moved forward by twenty or thirty minutes - and apparently because we are actually always early, we are not informed for several weeks.

In fact, we still were not informed except that I ask for the print out from the dialysis machine - and it was noted in his records that he was LATE and thus the treatment time was "adjusted" (CUT down from his prescribed time). We were not told this information at any time. We would have never known he was "always late" if we did not get the print out and read the technicians notes.

When I called today and asked for his actual appointment time, I got an argument, and then they finally checked the "master list" and gave me the new time. They insisted this was his "usual time" - so at some point in time in the last two months his appointment was moved up from 3:20 pm to 2:50 pm AND WE WERE NEVER INFORMED OF THIS CHANGE.

This is the second time this clinic has moved our appointment time, and not informed us of it.  Then blamed us for being "late".

The first time they moved our appointment for dialysis forward by twenty minutes, and did not tell us - when we were finally "late" a tech stepped out and yelled at me in front of a room full of people about how I "always bring him late" and it is all my fault his treatment is cut short because we are "always late".

If you change the appointment time, and do not tell either the patient or the caretaker for WEEKS then, big surprise, they are liable to be late for the appointment time they are NOT AWARE OF. 

And then the clinic shrugs, says, patients are always late or skipping treatment and that's why they are sick.  It is the patients fault or the caretakers fault they are late all the time.  It certainly could not be the clinics fault for changing appointment times without telling the patient or their caretakers the new appointment time. I guess we are supposed to somehow have ESP and know they have changed the time.

We are not alone.  I see this constantly.  People waiting for hours - because they arrived for what they thought was their appointment time - then were told it was two hours later, or two hours earlier, and they are late, or early.  Whatever.  It is always the patient's fault.  And then the patient is labeled uncooperative.  See the previous blog post for what happens after you are labeled.

When I complained to the ESRD Network, I did get a very quiet and private apology from the clinic manager for "forgetting" to tell us, for several weeks, that our appointment time had been moved up.  I never received any acknowledgement or apology for the very public screaming at me for "always bringing him late" and the clinic manager expressed amazement that I wanted such.  I was screamed at and humiliated in public, and apologized to very quietly in private.  But I am in the wrong to want a public apology.

This is simply part of this hemodialysis clinic culture that it is ALWAYS the patients fault, or ALWAYS the caretakers fault.  NEVER the clinic's fault.

If the clinic changes his appointment time, but does not inform us of the change - how are we supposed to know?  Are we supposed to have ESP?  Are we supposed to call on a daily basis, to be updated on his appointment time?  (Please note I called today to check on his appointment time and was told "the usual, we'll let you know if we change it".  When I insisted, they checked, and indeed, the appointment time had been moved. I had to INSIST to be told the correct time for the appointment and then they were rude about it.)

If we are not informed of appointment time changes by the clinic - how can they blame us for being early or late for an appointment?

Yet, they do.

Is there any other business on earth that runs like this?

In clinic Hemodialysis ABUSE - Banning and Uncooperative labeling

This is not the first occasion on which my husband, and I, have been abused by a hemodialysis clinic - and it will not be the last.

There is a vast secret in the in-clinic hemodialysis community about the abuse perpetuated by the clinics on their patients and their caretakers.

This is because if you dare to complain to the higher authorities, you can be punished in the clinic.  These people stick two large needles in your veins every other day.  These people monitor your treatment, and can shorten it or otherwise cause it to be inadequate and make you ill as a result. If that should happen, they will claim it is the PATIENTS FAULT they are ill, and they will get away with it, since they have been for the last 30 years or more.

If you complain you will be labeled UNCOOPERATIVE.  If you refuse unnecessary treatments or drugs you will be labeled UNCOOPERATIVE.

This label, UNCOOPERATIVE, is also used on patients who are not mentally competent, who can become violent and threatening.  SAME LABEL.  So when you try to move to a new clinic - suddenly they have no openings.  They don't want an UNCOOPERATIVE patient who will make trouble.

Hemodialysis clinics have the power to BAN 'UNCOOPERATIVE' patients, their caretakers, and family. This is a good thing when it is used to protect the clinic personnel from violent, threatening people.  It is a bad thing when it is also used as a threat to keep people from complaining about improper treatment.

Because if you are BANNED by one clinic for being UNCOOPERATIVE, then other clinics will not treat you either.

If you do not receive your hemodialysis treatment, YOU WILL DIE.

How potent a threat is that?

So patients, caretakers, and families, keep quiet when the patient, or family and caretakers are abused. For fear of in clinic retaliation.  For fear of being left to die.




Tuesday, May 9, 2017

Morning Sunflowers

With all the fear and suffering the U.S. is enduring now as our government openly plans to let those of us who are ill die slowly without treatment to save money so Trump can go to Mar El Lago for the golf, and kill other people around the world more quickly - this greeted me when I looked out my window this morning.


At least we can still enjoy sunshine and sunflowers.

Blessedbe

Summer Foovay

Saturday, May 6, 2017

Chronic Fluid Overload Can Shorten Life for Hemodialysis Patients

Kidney patients on hemodialysis are constantly nagged to watch their fluids. We are fortunate in that my hubby has some residual function left in his kidneys, and he still urinates.  This allows him to have more fluid than some patients - who no longer urinate at all.  He also stays as physically active as possible, taking a daily walk, and this seems to also help substantially with keeping excess fluids off.

Another problem that we had, especially when we first switched back to hemodialysis, was getting the dialysis clinic to take him all the way down to his dry weight. This is one reason you should monitor closely what your clinic is doing as far as your treatments.  Don't blindly trust them to do the treatment correctly. We have time after time had to point out to the clinic personnel mistakes made in my husband's treatment, from cutting his time short, to leaving far too much fluid on him. 

If you are a hemodialysis patient, you probably already know too well the miseries of having a fluid overload.  But now there is a new study that makes it clear that a fluid overload is not simply miserable - if it is chronic it can literally shorten your life. They concluded persistent fluid overload raised your risk of early death roughly as much as having coronary artery disease or being twelve years older.  You can read more about the study by clicking here. 

So, I know you get nagged about this all the time - but really, it is so important to keep your fluid overload at a minimum. There are a lot of people who love you and want you to feel well and to hang around with them for many more years of love and happiness.

I am still a big advocate for peritoneal dialysis.  More frequent dialysis, and more control over your own treatment can be a big help in avoiding fluid overload. It isn't perfect for everyone - but it is a viable alternative to in-clinic hemodialysis or home hemodialysis. And, yes, I did write a book about our experience with home peritoneal dialysis that you can purchase by clicking here. 

Blessedbe

Summer Foovay

Thursday, May 4, 2017

Checking In On The Garden

I ain't got much money - but I've got a wall of oleanders and a little veggie garden!

My jalapeno plant has a pepper already!


And this morning my first sunflower bloomed!


Ain't nobody gonna get me down today!

Blessedbe

Summer Foovay