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Wednesday, November 29, 2017

Jet Airliner


Goodbye to all my friends at home
Goodbye to people I've trusted

-- Steve Miller Band

Help me, if you Can't


In May of 2014 I got some of the worst news in my life. I came to the hospital after I got a call from my primary care doctor's office. In the weeks preceding this I had my yearly physical. My kidney numbers were "a little off" and I had complained about some cloudiness in my urine over the preceding weeks. Three weeks after, I got the call. "Get to the emergency room. Your kidney's have failed."

I mean, who says that? "Your kidneys have failed".  That's a god-damned ridiculous thing to say. And who gives that news with a monotone, seemingly disinterested voice? Wouldn't your doctor meet you at the ER in such a case? I mean, we're all busy, but damn. Who even can miss a myeloma diagnosis, or a tumor in a kidney even after an ultra-sound? To say my doctor's office let me down, and specifically my physician's assistant failed me in the worst way at the worst time might be the understatement of the century. They blew it.

What does that even mean, anyway; what does it feel like? I had not been feeling well, I had some other symptoms, but who thinks about kidneys? I had been nauseous, had flu-like symptoms, What do they even do? Turns out a they do a lot. Most people know they filter our blood 24 hours a day every day, and produce urine, which contains all the waste that builds up in your body, including excess fluid.

Turns out your kidneys do many other things. But, bottom line is: if your kidneys aren't working: you die.

The really bad news is that no-one can do anything about kidneys once they go bad. Kidney doctors, or "nephrologists", as undoubtedly they introduce themselves at cocktail parties, can't cure anything. Kidneys do not repair themselves; there's no medicine nephrologists can prescribe; they're too delicate. These organs have tiny passageways laid down while you were in your mother's womb, passageways about the width of 1 red blood cell. Your body simply does not have the tools to repair them.

My passageways were full of jagged little protein bits; so full that it clogged them, and the proteins are of a shape that scrapes them up, damages them. They can no longer function. And there's no fixing it. Nephrologists said "let's wait and see" a lot during these early days; and that's about the extent of what they can do. They can prescribe dialysis or aphaeresis, but they're not fixing anything. 

No medicine or miraculous artificial kidneys here. Once they're gone, they're gone.

And: mine were gone. Diagnosis: Multiple Myeloma. Side effect: kidney failure.

Goodbye to People 


It's difficult to get through this, I will admit. There were times I did not think I could do it. I felt overwhelmed; it's too big, I thought. Dealing with one of these issues is hard enough, but having to deal with two issues is a lot.

But, with the help of my family and some close friends, I did do it, continue to do it.

Recently, I was recounting this whole story to someone close to me. At some point, I said, "some people got funny".

So I go down the street
Down to my good friend's house
I said look man
I'm outdoors you know
Can I stay with you maybe a couple days?

He said let me go and ask my wife
He come out of the house
I could see it in his face
I know that was "no"
He said I don't know man
Ah she kinda funny, you know

I said I know,
Everybody funny,
now you funny too

-- George Thorogood

Some people did in my estimation "get funny". These were people that I thought would help out, or at least have a modicum of pity. However, some people ran away, or turned away; some of whom I didn't expect to. And this hurts, because the opposite of "love" isn't "hate", it's: indifference. And some people, whom I expected to help, or show sympathy (or empathy), were indifferent.

The other day when I was at the local home improvement store I saw some people that we know. Our boys played T-ball, baseball, lacrosse together. We go to the same church. However, they didn't even cast me a second glance, even as I put myself into their field of view, in that posture of "hey, hello!". Granted, I didn't say anything, either, but I felt I made myself more than available for: "well! hey, how have you been!?" 

But what I got instead 
was: nothing. Not even a 
second glance.

Now you funny, too

Well. You might think, ok, they haven't seen you, maybe they didn't recognize you. These folks are already aloof, but either way, I say, no. That is complete BS. I had no problem recognizing them after 3 years of changes hung on them. I might as well have been an apparition, or worse: invisible.

I've had more than one experience like this, and people's reactions, even when we talk directly, are "funny".

I've since learned to shrug this off. It's not easy. Some boats you just have to let sail off.

Hello to my True Friends


So, in the end what was left was my family, and my true friends. I mean "true" because true friends do not turn their backs on you or act like you don't exist any more no matter what. Plus, friends we were just casual with suddenly became close; they had empathy from some prior experience, maybe.

Why do people do become "funny"? I do not know. Am I imagining it? No. I've always been fairly adept at reading people. Some people just turn away. 

They get funny. They can't get on the jet-airliner headed to where you're going. So leave them behind and focus on who's with you.


Sunday, November 19, 2017

Forget About It - Part III - Me: 3, Myeloma: 0

And my zero
To your power of ten
Equals nothing at all

-- Ian Anderson

Today is the anniversary of my (first) stem-cell transplant (SCT). November 19, 2014. I haven't had more than one, but I'll say "first". I lived in the "bubble" up on the 9th floor at the Duke University Hospital. It has double entry doors, maintains positive air pressure, meaning all the air flows out of there towards the main hospital. Even the rooms are higher pressure than the surrounding ward: hopefully pushing more bugs out every time the door is opened. Many of these SCT's are done on an outpatient basis; but my case was complicated enough my doctor wanted me inpatient.

Regardless, on this day in 2014 the nurses started writing my white blood cell count on a small white-board in my room.

Today, three years ago it was: 0.

That means 0 detectable white cells, which means if you come in contact with some nasty bug, quite possibly you could be pretty much history: your body can't fight it off with 0 soldiers. I remember feeling extremely vulnerable during this time.

Waiting again; waiting 
for 0 to become not-0 

It then becomes part of the daily routine. The first morning nurse writes the number each day. 0. Followed by 0. Then 0.1 (not 0!) and so on up and up, hopefully, waiting for the "engraftment" which meant your new stem cells had found their way back into your bone marrow (however they do that), and they're instructing everyone else to do what they should. Conceptually it seems easy; but it's beautifully, horribly complicated.

Rocket out of Here


Once the "0" was written down, I distinctly remember thinking, Ok, I need to get past this and down the timeline as fast as I can, whatever that means. I just need to tick off the hours, days, weeks to get away from this and leave it behind.

Seemed like I was living hour to hour, day to day at that point, waiting for that 0 to become not-0. They give you some nasty chemo to kill of your bone marrow; and that kills of a good many other things, white blood cells included. You remember them? They fight off all the nasty things that try to (or do) get into your body. And until your white-count is 0, you don't think about how many nasty things that really is: always every day trying to get in, or getting in and just "being handled".

My days there were filled with all kinds of activity, mostly things I want to forget. Blood transfusions, IV drips of Magnesium, dialysis, industrial strength diarrhea, crappy food, ultra-thin toilet paper, endless beeping machines, Sunday butt swab, frequent nurse checks, little sleep, mandatory exercise.

Every day the doctors, pharmacist, nurse(s) would visit everyone's room on the floor. This is a little intimidating because you have at least 5 people standing around you, in a smallish room, all looking at you or asking questions of you as if you were able to do something about all this. I, however, was just riding; some people call it "handing the wheel over to God"; and maybe that's it, but the main idea is: you don't control anything, Buddy, so make the best of it.

What I remember, though, to the positive: the way my doctors came close and listened to my lungs. It was that close contact that is subtlety re-assuring. And it was this listening and human contact that led to the detection of a nasty bug in my lungs.

Not machines, but people;
human closeness
intently caring.

I did have a bout with something nasty while I was not far away from 0. Once your "engraftment" hits, you sometimes get a fever (named engraftment fever, surprise!). Something got into my lungs; and there was much scrambling and medicine; it was more fever than they wanted to see.

Then there were IV antibiotics, bed-side chest x-rays, and so on. This game me a weird feeling b/c I knew it didn't really matter so much what the doctors were doing (the best, smartest things), or what their theories were, versus what is actually going on inside me. I realized: I'm just along for the ride. The die is cast; so it's just wait and see. What will happen? Maybe something bad; maybe something good.

Sprung


That nasty whatever-it-was did go away, possibly done in by my new re-enforcements, possibly from the medicine; or both. I did eventually get out of the hospital, and we came home, only to be quarantined for more many weeks more, required to stay away from others, more or less. That was fine by me because I was extremely tired, way more tired than I can ever remember being, ever. My bed was like a siren song calling me back; and the one thing I wasn't supposed to do was sleep all the time. But oh, the call.

Some people want to visit you, which is blessed, but under these circumstances, no-one should. This falls on your care-taker to turn them away; they're the ones with the disappointing news, seemingly unnecessary to some. But, almost everyone "got it" and accepted the conditions, and were not offended. Any extra fevers or bugs that come in by well-meaning souls only guarantee a return trip to the Duke Emergency Room, and possibly back in to the "bubble". I love them, but no thanks.


By the Way: Did We Mention the "High-Risk" Profile


We got through all this with the help of family and friends, many of which from our church. You can't do it without family and friends. You can't. If you don't have faith, I'm not sure what you do. Maybe pray without really praying.

Everything seemed to be going as well as could be expected at the "SCT +3 month" mark. I had a routine return visit with my transplant doctor, and we thought it would be all great, high-fives and back-slaps. But, no. There was this problem with my "cytogenetics" report from when the MM was active. Turns out there were some "high risk" markers; certain chromosome abnormalities and so on.

This was news to us; either we had missed this detail from before, or it was never made clear to us until now. Either way it did not matter. This was news to us.

What did it mean, though? There is much debate in medical circles (as we've since learned), but my transplant doc was afraid it meant I'd relapse within a year, based on her experience. Let's face it, she sees many many MM patients; more than most hospitals. My blood tests possibly indicated "active disease" still, she said.

They wanted me to do 
another stem cell transplant. 
Like within the next few weeks.

There was no way I could do another one just then. And this news was crushing. Absolutely crushing.

So, after much hand-wringing, we got another opinion from a different doctor over at UNC Hospitals. He's a well-respected Myeloma doctor, also. To make a long story short, his opinion was: you're in complete stringent remission. No second transplant is necessary. That certain blood test was high; but, because of my kidney failure, he said it was expected to be higher than normal; it did not necessarily mean the disease was still active.

This is precisely why I tell people not to be shy about seeking out second (or third) opinions from specialists in the field. It's your butt on the line, so don't feel so bound to one doctor's opinion. Especially with a complicated disease like MM.

A bone marrow biopsy was ordered to find out once and for all; and it was, thankfully, negative. As in: "MRD Negative", which is pretty much the most sensitive test that can be done in this day and age. Basically for that test they count 2 million of your cells and look for any Myeloma cells in there. I had: 0. By the way, back in May of 2014, when this all began, that number would have been: 1 million.

But this was a different, better kind of 0.


The Negative of Bad is: Good


On this third anniversary, I am both joyful and saddened. I am sad because I know some MM patients that did not make it very far past their diagnosis. So, it makes you wonder why you were spared and they were not, especially if the doctors' opinion you were "high risk" for relapse, and for MM relapse often means bad news. This is what they refer to as "survivor's guilt".

This also puts your faith in peril, because why are some spared and some not? Not because of their lack or abundance, their purity of faith?

He causes his sun to rise on the evil 
and the good, and sends rain on the 
righteous and the unrighteous

Matthew 5:45

But now I look back, from my time-rocket, and I'm thankful I am far away from that time and place, but aware that others are back there now, or didn't make it away from their 0 in their own time-rockets. I feel like I'm deserving of this perspective; to a certain extent I have earned it. And I think (hope) that those who did not make it would approve; so we honor their memory, also.

I do have some fond memories of those times, especially the care from the doctors and nurses. They are so very dedicated and invested in their patients. I do not know how they do it. Also, the personal contact some people made during this time.

Today, I choose to remember these fond memories while acknowledging those who have gone.

It's sometimes the littlest of things that make the difference, so if you know someone going through a similar situation, maybe try these:
  • We have some (older) friends from our church, they are the sweetest people. She sent me several hand-written cards and notes. I would take one of these over 6 billion "likes" on any social media; any day of the week.
  • Last year, on the two-year anniversary we had a party here at the house. Several of my friends got involved and we decided to raise money for UNC and Duke Hospitals by shaving our heads. Idea was if we got $1000 the lot of us would do it. I said I'd do it for $200. Turns out we raised over $2000 for this event, thanks to the generosity of our friends, their families, and their friends.
  • This year my wife and I started a support group for Multiple Myeloma patients and care-givers. Survivorship comes with obligation, I think, and we aim to provide a supportive community to those near us suffering from this same illness. We're affiliated with the International Myeloma Foundation
    • Other causes I feel passionate about: donating blood; and organ donation.
  • One of our friends prepared for us a "basket" of goodies for the hospital stay
  • My sis-in-law and mom, and my kids, made some holiday decorations and put them up outside my room in the transplant-clinic on the 9th floor. We had lights and a great "fireplace" scene; and an "Elf-on-the-Shelf" which hung in a face mask on my door, just like a hammock.
  • My pastor spent time with me, even in the "bubble". Even when we did not talk, I just laid there, and when I opened one eye: he was just there. Just there. Sometimes when you open your eyes and you see someone there, close, it's support enough.
  • My sis-in-law came with my mom to help out, and she was a blessing
  • We spent Thanksgiving 2014 in the "bubble". My mom made dinner for the kids at the house. My wife and I had dinner at the bedside, such as it was. Some volunteers brought some desserts by, and that was wonderful. I didn't eat any, but just seeing someone doing that on their day off was awesome. My mom and the kids came by after. 
Maybe the most thankful Thanksgiving ever.



Monday, November 13, 2017

Forget About It - Part II - Permanent Waves


A simple kind mirror 
To reflect upon our own 
All the busy little creatures 
Chasing out their destinies 
Living in their pools 
They soon forget about the sea... 

Neil Peart (Permanent Waves, 1979)


How does one keep it together when the universe seems set against you? You cling desperately to those you love, that's how. And if you have faith, you cling to it like you never imagined you would ever.

I still can remember the day the doctor dropped the "C" word on me. Not long after I felt like I was all alone. No human truly wants to be alone, I think it goes against our nature. But cancer fights you in weird and vicious ways; and it's relentless. I found that I had to put it in its perspective, finally, but this is not easy by any stretch.

It wears you down after a while; and survival, while the dearest privilege, comes with a price. What price, you ask, can't you just be glad you've made it this far, celebrate your life? Yes. But I have met some people with whom I've had a good relationship that did not make it. Why they should not and I should is a mystery, but finally not up to me. I know some others still fighting that crucial, definitive fight of their life.

One thing the cancer did not count on, or predict, was that love is bigger.

No matter what else happens in your life, only love matters or endures forever. The rest dies off eventually to be forgotten; but love goes on. Forever.
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 
 1 Corinthians 13
My faith is integrated into my own life, obviously. But, it took others to bring it forth, most notably my own wife. I always say anything good that is in my life came to be because of her; and mostly that's true.  I have written before about the dedication and love demonstrated by my wife during this ordeal. And again about the memories I have waiting for her to return to my bedside during my stem-cell transplant.

Permanent Waves



I always smile (maybe wryly) and think about Things whenever I see the Permanent Waves album cover, shown here. Growing up I was introduced by my (drummer) friends to the rock band Rush, and I became a rabid fan. Rush has made many, many albums over the years, and of course eventually discussions and debates as to their "best album ever" come up among their fans. I've never had a doubt about my personal choice about this, but it differs from the generally-accepted "best" album (let's say 1984 and prior).

Most people say Moving Pictures is Rush's best work to that date. I also love it, and I understand where they're coming from. That album represents a pinnacle (not the pinnacle) of their musicianship, and the move to the complete album with 5-minute-ish long format.

However, my favorite always was, and is still: Permanent Waves.

This one was released just before Moving Pictures. To me, it shows the major transition in progress in this band; it's evolution in motion. And Permanent Waves is a metaphor on many layers. Without Permanent Waves, Moving Pictures doesn't happen. The album itself is like a wave, both smoothing out and washing away, mixing up what came before, but it's also something to be ridden forward. Like Life itself, this band is never shy about washing away what is in favor of what must be. To me this is the essence of the chaos which is Life: ever-evolving, wandering and seeking in small steps, sometimes catastrophically washing away what we have; but always replacing it with something more beautiful.

And lately I've been attracted to the album artwork (remember when that was "a thing"?). Perhaps now this one is easy to see why I love it. I have to say the casual way the man is waving always makes me chuckle. Living in our pools we soon forget about the sea. Even after the sea has washed our things away how quickly we go back to ignoring the fact that it's in control, not us.

Permanent Waves: Family and Friends


In addition to my wife, my entire family played a key role in keeping me going. And some close friends, also.

This is the day before I went into the Duke Cancer ward at Duke University Hospital in 2014. This day one of our close friends shaved my hair off for me. It seems like a minor thing to do, but someone taking the time out of their own busy day to do this is important to me. I wanted my hair shaved off before going into the hospital because I knew it would fall out anyway.

She had studied the universe her entire life, 
but had overlooked its clearest message: 
For small creatures such as we 
the vastness is bearable only through love.

-- Carl Sagan (Contact)

It's true. For small creatures such as we the vastness is bearable only though love whose tempo is kept by another Permanent Wave: the beat of our hearts.

          

Saturday, November 4, 2017

Forget About It - Part I

Forget about it
I'll split and I'll be gone
And you'll have memories
You'll find hard to ignore



My doctor told me in early 2015 that despite my treatments it was "pretty certain" that'd relapse within 1 year of my original diagnosis (May 2014). And relapse for Multiple Myeloma is never good news.

But as of 2017, three years later, that has not happened; either b/c of medical wizardry, wild cosmic luck, or because so many people (more than I could have ever imagined) prayed for me. You pick the one(s) that fits your view of the universe.

This month (Nov) 2014 was a memorable month for me and my family. And not because of some bad mustache I grew and shaved off. In this month 3 years ago I had my blood pumped out for 8+hours for 2 days over what would be this coming weekend, Nov. 8-9 at the Duke University Hospital Adult Bone Marrow Transplant (ABMT) clinic.

We've made an inordinate number of trips there before and since.

Of course my wife Judy was there with me; but we remember that our daughter Amelia was at a church retreat (Pilgrimage '14) on that weekend, and our boys, Daniel and Eric, just 13 and 10 at the time basically had to take care of themselves during those two days.

 Turns out all of our views 
of the world were being 
re-worked this month in 2014.

Following this collection I was lucky enough to spend 17 days in the cancer ward beginning November 16 at Duke Hospital, including over Thanksgiving that year.

I remember a lot of things about this holiday, but one was about one of my doctors. She and her family were going around door to door in the cancer ward Thanksgiving Day, visiting people, giving out desserts they had made. On her day off. Basically they had prepared and sacrificed their holiday to be at the hospital: a place she'd almost certainly already been at every other damn day and night that year.

But here they were, giving again, in a non-medical, but important, way.


Forget about it
If we chance to meet somewhere
Don't think it's 'cause 
I'm trying to reconcile


Many forgettable things happen to your body before and after they give you "the real chemo" to kill off your bone marrow. However, many memorable and sometimes humorous things happen to you, even if it takes some years to appreciate it as humor.

It's these better memories I'd rather share over the course of this month in 2017. Here are some good (if not funny) memories, particularly about the nurses at the Duke ABMT, and in the Duke Hospital Cancer Ward (9th floor!).

November 8-9, 2014

Not much to do but Sudoko; and wait
Before you can do a stem-cell transplant (SCT), you have to have stem cells. For my SCT they use my own stem cells. They collect your stem cells out of your blood by cycling your blood into a machine that separates them from the rest of your blood. It's a very interesting process, if you can get over the weirdness of watching your blood leave your body and go into a machine and (hopefully!) come back.

This process takes time; a lot of time, like hours and hours. We spent 8+ hours for a couple days at the ABMT doing it. 

Keeping up the humor and the stem-cell count with such great drugs like Neupogen; Mozobil, one that kicks the stem cells out of your bone marrow and into the bloodstream. I called that one "Beelzebub" because of what it did to my intestinal tract.





My Favorite Visitor
I always joked that Coach K (Duke basketball) came to "visit" me. Seemed like everywhere I went in Duke Hospital facilities, there he was!

I never got tired of this joke, but no-one else seemed to care.











One of my stem-cell colletcion nurses



Nurses make the hospital. Someone told me that once. Now that I have spent the better part of a month in the hospital, watching, and being cared for, I agree. I have had good ones, bad ones, and great ones.

The nurses at the ABMT and in the cancer ward over at Duke Hospital were amazingly good.










Other (perhaps) fond memories of those days:
  • Listening to one phlebotomist brag about her IV-placement prowess only to watch her make a (painful) mess of my left hand's veins and have to move on over to my right hand late on a Sunday night, my very first day in the hospital.
  • One nurse literally climbing up on my bed, straddling me, and applying the "sternum rub" to wake me up after my "post-chemo nap", from which neither my wife nor regular nurse could wake me.
  • Uncommon kindness by one of my nurses to track down and install a 4" foam pad under my sheets on the bed I was in for 17 nights after several nights without.
  • Measuring my bodily fluid output for 2 weeks+ every time, every day. Yes I had to catch #1; and also #2 into a "hat" on the toilet. I once mentioned that once you go into the hospital your dignity is the first thing to go.
  • Did I mention the "MRSA" tests? Yep, every Sunday night was "ass swab" night, and yes it's as embarrassing and awkward as it sounds. Somebody had to do it and somebody has to endure it.
  • The countless times the nurses wiped down my access port. It was in my neck, and the plastic ends would "click" together as they cleaned them every time they took blood samples. And this happened so often that this "clicking" sound is engrained into my memory and it makes me literally cringe now thinking about it (maybe that's not such a "good" memory).



Friday, November 3, 2017

Meow!


I'm f*cking this cat,
you just stand back
and count the kittens.

I first heard this expression many years ago. I was with a friend and we were at one of his other friend's house. This guy was working on a car with yet another one of his friends when we got there.

Before long it was three of us standing around watching the other one trying to get some part off this car. It wouldn't come off. And it seemed like to the three spectators that maybe he was going about this all the wrong way. If he just did such and such or so and so, it would be much easier. Why was he persisting in this method that wasn't working?

The guy was becoming a bit exasperated. At about the time it was becoming a bit tedious to watch, one or two suggestions were finally made, unwisely interjected into the situation. Hey, why don't you try such and such; or why not do so and so?

And that's when they guy, working on the car, asked politely if we'd ever heard the expression?

Transplant Wait List


About a month ago I started taking a much more detailed look into the way in which organ recipients were chosen. National guidelines are set up by the US Department of Health and Human Services as part of the Organ Procurement and Transplantation Network (OPTN).

They publish the methods and criteria for matching donated organs, of which there are few, to potential recipients, of which there are many:




From a distance (conceptually) this seems like it might be pretty straightforward. Organ becomes available, pick the person that matches it from the head of the queue.

I have often been asked, "So, where are you on the list?" Again, from a distance this seems like it should be easy to answer, but it's not so easy. It's not like everyone's lined up together in one line and you just go down the list. You can't say, "Oh, yea I'm 10th, any day now". It turns out there are many factors that might push you down or jump you up in line.

So it's a bit like chasing 
a chicken around. 
How close are you 
to catching it? 

Always "pretty close".

What Makes a "Better" Recipient

Once we eliminate everyone that can't possibly take an organ (for medical reasons), how does one choose from the set of people that do match?

In the past the selection criteria included the time you had actually spent "on the list", which meant it was dependent on how soon you got accepted to the list. Which meant it was dependent on when you were recommended to be on the list. The scoring was improved some years ago. The older way was biased towards patients with nephrologists who were eager to get their patients on the list. This left room for bias, even if it was unintentional. Some argued that minorities, for example, were not being treated fairly, that systematic (or cultural) bias existed against them.

There were other ways, too, in the older process, to jump ahead in line. It was maybe not as well-published or well-understood a process as it is now; so making arbitrary decisions was enabled. We've all heard stories of this or that celebrity (or such-n-such's mother-in-law) jumping over everyone else one the list because of their influence and or cash on hand. They needed to stop this, obviously.

So in order to more fairly "rank" recipients, the process was made more open and clear, with mathematical formulas in use. The notion of "time on the list"was replaced by "time since beginning dialysis" which meant no matter when you came to be on to the list, your "wait time" was calculated from when you became dependent on dialysis. So if you didn't get recommended to the list until later, you were being measured fairly against the others, and weren't being penalized for being "late to the game".

So what makes the "best" candidate ford an organ? Here's what the OLTN says about kidney transplant, beyond the "matching" that must be done on a medical basis.

Blood type and other medical factors weigh into the allocation of every donated organ, but, other factors are unique to each organ-type. Kidney:
  • Waiting time
  • Donor/recipient immune system incompatibility
  • Pediatric status
  • Prior living donor
  • How far from donor hospital
  • Survival benefit (starting in 2015)
Where:
  • Waiting time is what we mentioned before, basically how long you have been on the list as defined by when you started dialysis.
  • Pediatric status means that kids are given higher priority, which is admirable, and they probably have a better chance at the longest life and therefore longest use of the donated organ. 
  • Prior living donor means that if you give a kidney to someone else, then become in need of one yourself, your priority is higher. I think this is also defensible, because those people did something to put themselves at risk to save another. 
  • How far from the donor hospital means I will not be getting any offers for kidneys from a hospital in Alaska (even if I were listed there). 
  • Survival benefit is an estimate of how long you're expected to live after receiving the donation. In short, we'd rather not give a kidney to someone who's going to keel over next week if we could give it to someone we expect will live for years.

Multiple Site Listings

You can be on "the list" within more than one regional organ network. You wait time is different, however, on these lists. You can only take credit for your dialysis-start-date into account on one of the region's lists, your primary one. If you are listed in two places, the first would take into account your dialysis start-date for your "wait time" calculation, but the second one would take into account only how long you've been listed there (time on list), like the old way of doing things.

This changes the game a bit because the sooner you get listed at a second (or third) site, the better. So depending on the advice of your doctors, when it's given, or your own motivation, getting listed at a second site sooner rather than later might make sense.

"Open Source" Algorithms


I write software for a living. Much software today falls under what we call "open source", which basically means no-one owns it, it's part of the public domain. It's "open" for everyone to see and it's free to use (under certain conditions). There are a lot of benefits to open-source software. Take Linux, for example, which is a widely used server operating system; it's open-source.

One key benefit to open-source is that it's transparent: everyone can see what's going on because they can see the actual source code. This has benefits, like increased security, or well-documented breaches of security soon after they're discovered. But mainly, it puts the decision making processes out in the open for everyone to see.

There's no "man behind the curtain" 
pulling hidden levers, 
making the decisions 
appear to be random in nature.

I became a bit more interested recently in the decision making process as it relates to kidney transplant because after all, it has a profound effect on me. I had also had some recent disappointments as far as my expectations go, related to how long this process would take; I had received what I thought was conflicting information. Some of it was my own (unwarranted) optimism, but some was to do with the way my doctors explained how the system worked. I wanted to look behind the curtain, if there was one.

The OPTN publishes the methods it uses for ranking recipients and its policies for allocating organs. All those criteria I previously mentioned have to be worked in to a formula and/or algorithm for ranking potential recipients that match a given organ. Whoever comes out on top in the region gets the first "offer" of the organ. Meaning, when your number comes up, they call you and "offer" you the kidney.

Turns out in the meantime, they are also calling a few other people as well. In fact it's not unheard of for more than one person to show up at the hospital for the same organ; but in the end there can only be one. The other(s) are sent home. Can you imagine showing up at the hospital thinking you're going to get a transplant, but being sent home without?

This might seem cruel, but there is reason for it. If Joe shows up at the hospital all ready to go, but backs out at the last second, what should they do? They do not want to put the kidney down the disposal. Having more than one recipient ready at-hand helps ensure it will go to somebody on that day. It's a tough pill to swallow, though, if it's not you.

But back to the actual numerical rankings of recipients. How does that work? How can they sort out all the potential matches in a fair and balanced way?

Well, like so much in life,
when there is the assertion of fairness, 
there is the bias of implementation.

Why would I say this? Surely the algorithm has been hashed out to be fair over the years? I'd say it's been hashed out to be more documented and consistently applied; but not necessarily fair. We showed the criteria before, so obviously it's biased in certain, albeit defensible, ways.

But are there other biases not so defensible encoded into this process? I think: yes.

Scoring


I've asked my doctor on more than one occasion, what is my priority on the list, am I being treated fairly? Or if it's not fair, am I coming out on the good side of the bias (who wouldn't want to?). Oh yes, we changed the algorithm in recent years to favor people like you, younger healthier persons. I felt better about it.

It's not that I don't trust him. But once I examined the actual ranking algorithm, I found it wasn't quite the matching up completely to what I was being told. You can read the whole thing here in the "Policy 8" section (on kidneys). Maybe his understanding of the algorithm wasn't fresh, or maybe this is just the way they describe this process, he wouldn't try and deceive me deliberately.

Only way I know how to resolve the question is to closely examine the process. Here is one of the formulas that ranks recipients, supposedly by the criteria listed before. I'm supposing higher score is better, though it's not explicitly stated in the policy.

This isn't your "final answer" because other adjustments are made, but this does sort (rank) recipients:

A candidate’s raw EPTS score is equal to:
 0.047 * MAX(Age - 25, 0) +
-0.015 * Diabetes * MAX(Age - 25, 0) +
 0.398 * Prior Solid Organ Transplant +
-0.237 * Diabetes * Prior Solid Organ Transplant +
 0.315 * log (Years on Dialysis + 1) +
-0.099 * Diabetes * log(Years on Dialysis + 1) +
 0.130 * (Years on Dialysis = 0) +
-0.348 * Diabetes * (Years on Dialysis = 0) +
 1.262 * Diabetes
The EPTS calculation uses all the following as binary indicators

  1. Diabetes
  2. Prior solid organ transplant
  3. Years on dialysis = 0

If a binary indicator is true, then it is replaced by a value of 1.0 in the calculation; otherwise, it 
replaced by 0. Fractional calendar years are used for candidate’s age and years on dialysis.

The "binary indicator" is a way to "add in" (or "subtract out") a certain criteria if it's present. So, if you have diabetes, you replace "Diabetes" in the formula with 1.0, so its term is then included in the final score either positively or negatively.

Conspicuously absent from this formula is explicit treatment of "survival benefit", unless that's somehow encoded in the other criteria.

Where they came up with the coefficients they chose, I don't know. Possibly by analyzing and fitting the data they had to make the scores come out the way they wanted. I don't focus so much on the value of the coefficients themselves, but rather on their relative magnitude. That is, which terms get the most "boost" or most "penalty" relative to the others? This serves to separate out scores corresponding to the criteria that are actually important (encoded into) according to this formula.

So, whom does this scoring favor (or not)?
  • Age 25. There is some (0.047) contribution if your age is > 25. If your age is <= 25, you get 0. But I thought you said kids were given higher priority? Yes, they are. There is another table called "Kidney Allocation Points" (see section 8.3, tables 8-1 and 8-2) besides this one, and you get more "points" if you're young.
  • Prior transplant. This isn't the criteria for "you previously donated an organ", this means that you received a transplanted kidney already. If you did, you get a positive contribution (0.398). There is no mention of this in any high-level descriptions of the important criteria.
  • Years on Dialysis. This is the inclusion of the time you've been on the list. There is a bit of an adjustment (0.130) for your first year of dialysis (Years-on-dialysis = 0); in your first year, your contribution for "log(years-on-dialysis+1) = log(1) = 0. They say they use "fractional calendar years" here, but I doubt that's accurate. It is notable they've chosen a log() function for the years-on-dialysis contribution, though it's not massively logarithmic (it's closer to linear). Log functions tend to change more quickly at first (near the origin) and then more gradually over time. This means year after year the contribution of this tapers off.
  • People with diabetes. The clearest winner here among coefficients is if you have diabetes. You get a whopping 1.262 contribution. There are some negative contributions factored in with the other criteria. But all else being equal, having diabetes launches your score upward.
This is easier to see that the diabetes carries significant weight in the formula. This formula would actually better visualized as a set of 3D surface (x, y, z) = (age, years-on-dialysis, score), one per "binary indicator". However, if we take just my own situation, we can plot it as a line with (x, y) = (age, score); I show the two lines below: one supposing I had diabetes, and one supposing I did not.

I'm always ranked lower than the "diabetic me"

There is clearly separation in the scores.  The scores for "prior transplant" fall between these two. If I had diabetes, my score would be much higher. What does this really mean, though? We'd have to look at a more complete picture here, but we can see that I never score higher than anyone just like me (age, years-on-dialysis) that has diabetes until about age 58. 


So, is this Process Completely "Open"?


I asked my doctor about this, what I considered to be unfair bias. I think he was a bit surprised that any typical "Joe" patient would dig around in this process. Probably most people are "OK" with the explanations they're given, and justifications aren't needed. He couldn't really answer, about the bias, though he did say that one reason for favoring people with diabetes was that medically they benefited from transplant more than someone like me. To which I objected. While I am sympathetic to people who have diabetes through no fault of their own, there are plenty that got it because of lifestyle choices. Perhaps I also got Myeloma (and the resulting kidney failure) because of my own lifestyle choices, but I think not, and why shouldn't they be sympathetic to me, also?

He also pointed out that my hospital was pretty progressive in terms of allowing me on the list, given my history of Multiple Myeloma. But this is no argument in support of anything related to this process. True, I might be lucky to be on the list anywhere; but am I supposed to not ask questions, then? 

My contention was that because of new drugs and other advancements, MM in so many cases nowadays is becoming a "managed illness", much like diabetes. So why isn't MM favored or on equal footing to diabetes? Is it because of this "hidden criteria" of "survival benefit"? Where is that factored in, because in that formula above, it's absent.

The concern I have is that this process is in fact not totally open. I fear someone along the line is looking at me, when my number comes up, and Oh, that guy with Myeloma? Thank you, no. I want to know if this is happening, and if so, how many times has it happened? Zero?

Why else do I think there is room for last-minute "adjustments"? Because in the Policy 8 description of that formula, it explicitly says:

The OPTN Contractor’s EPTS mapping table is used to convert a candidate’s raw EPTS score
into an EPTS score. All EPTS scores are rounded to the nearest integer.

The "OPTN contractor" is the listing hospital. Unless this "mapping table" is published, this process is no longer open, and it leaves it to some proprietary system to give the final scoring result. 

Do I trust that my OPTN Contractor is applying these scores fairly and choosing accordingly? 

I do, but I also want to verify my trust. Without it, I'm just counting kittens.


Thursday, October 26, 2017

Paging Dr. Uncle Sam


Who said I would?

-- Phil Collins

Dialysis is a big, ugly-feeling industry into which (for better or worse) the federal government has stuck its nose. Go to any dialysis center and you'll find it has exactly that government feel: like going to the DMV, post office, or any other government-run establishment. I say better-or-worse. Better because prior to the government's 1972 mandate that essentially everyone who needs dialysis will get it at the expense of Medicare, decisions had to be made about who could get it. Worse because the government's (via Medicare) underpaying leads to overcharging everyone else. It leads to a bean-counting mentality in the industry which is far removed from innovative, individualized patient care.

Dialysis is a clinic setting, not an individual doctor-patient relationship, per se. I see first-hand that this differs from my oncology care, which is completely individual and private, one-on-one. Dialysis clinic is like a speed-dating service; the doctors and nurses are dedicated and able, but the setting in which this is carried out is the epitome of "clinic".

Access to dialysis was limited in its early days, partly because it was a new technology and there were only so many machines to go around. So not everyone who needed dialysis received dialysis. In those days, like today, money was a big factor; but so was your "value to society" which was determined by a board of doctors, and influence, etc.

Yes, a board of people basically
 determined if you were 
going to live (dialysis) 
or die (no dialysis). 

One can only imagine the hopelessness and powerlessness patients felt; and most doctors I'm sure also felt powerless and disappointed with such a system. No doubt a lot of bureaucrats took in salaries which afforded them new Porsches every couple years; and they didn't give a crap one way or the other if you lived or died.

Why Grab the "Third-Rail" of Government-paid Healthcare?


The reason I'm writing about this topic at all is because in recent years federalized medicine by way of socialized insurance receives a lot of (and increasing) press and mind-share. To me it leads necessarily to the kind of clinic (bureaucratic) environment and "clinic" setting you find with dialysis care.

This isn't what people who advocate for socialized medicine want, of course; certainly they do not want anyone to know it always leads to this, even given their best intentions to force people to do the "right" thing, and their dumping money on any problem.

What they really want is: first-class 
medical care paid for by someone else 

Or: reasonably priced medical care that is the highest quality in the world. But what we're moving towards, and what we'll get, is the other.

Of course we have federally subsidized insurance in this country already, over 40% of people are on it, and we have had it for quite some time. But, its over-use contributes in a direct way to a highest-cost, highest-demand, lowest-common-denominator of care.

Everyone wants reasonable cost for medical care, but medical costs are sky-rocketing, and have been for decades, so why is that? Artificially lowering cost barriers means higher demand for services which means higher prices. And technology contributes, at least in its early phases. And malpractice suits add up.

What else causes the cost of care to go up? Do you even know, do your providers even know, what it costs to provide their care? Over the past few years I have accumulate a a paper trail of explanations-of-benefits that prove that neither is known. Costs of medical gear/supplies certainly can be known, but because so much of the medical industry is service-oriented, who says what the doctors' and nurses' cost and should be paid? One would expect this to be determined by free market forces: the tension between what can be charged and what payers are willing to pay. This is the way many things' value is determined in this country.

Medical care is complicated. It's complicated not just by its nature, but also because health and life-and-death realities are mixed up in it.

But declaring health care "a right" 
is simply ridiculous. And so is 
declaring that it should be free,
 or cost next to nothing. 

In my experience the nurses and doctors caught up in this are caring and doing their best; but guess what: they'd still be that if the government wasn't involved. Treatment choices, costs, and options should be left up to the doctor and patient. Medical care is not some resource to be dolled out by Uncle Sam. Uncle Sam does not own it or produce in the first place. Uncle Sam owns _nothing_ in the first place, and produces nothing in the first place.


Medical care is the result of someone 
else's effort, and therefore we do not 
have a right to it. If you treat it as such 
it makes those in the medical 
industry your slave. Yes,
it's really that simple.

You Mangled Ayn Rand How, Then?

There are many examples where today's media have made allusions (and some just say flat out) that some recent social deviants were once also "readers" of Ayn Rand, by the way. Though, if they had read Rand (and importantly understood) themselves, they'd know the deviants weren't actually true followers of her philosophy after all.

Libertarians often snuggle up to Rand's ideas, or simply steal them; she never would have anything to do with Libertarians, and for good reason. I also have considerable disdain for Libertarian views for the same reasons. I have disdain for some Democrat and Republican views, also. Which is why I am fiercely Independent. I feel that my kind are few and far between, but really most Americans fall this way.

It's in the differences between us where the friction is. And that's where the arguments are, and how do people settle arguments? Sometimes its by rational arguing from first principles. At least that's the way we should do it in this country, since it's a country of ideas. Sometimes, though, it's by trying to force people: people resort to violence after their ideas have failed. Just look at recent events. But, people have a wide range of what they consider to be first principles. Most people don't like to have their fundamental assumptions (first principles) challenged; it threatens their world view. However, it's healthier to always question your first principles. We all have them; if you don't know what yours are, it's impossible to make a rational argument, isn't it? Then things are just the way they are because you said so. I challenge mine every single day, and I'm not afraid of it.

So, how does this relate to Medicare, dialysis, and the eventual implosion of the Medical Industry? One of Rand's contemporaries, Dr. Michael Peikoff, gave a lecture in 1985 on the subject of socialized medicine. This came some 20 years after Rand made a similar argument against socialized medicine in 1963, which corresponds with the introduction of Medicare.

It looks to me like the exact thing they predicted is played out. Don't believe me? Want government even more involved in health care? Go try it for yourself in a dialysis center. Or, put yourself in the doctors shoes: do you want the government to dictate to you whom you must serve, and how much you can charge for your services, or treat your services as someone else's right? Sure, it's OK as long as it's happening to someone else. But I say: BS. Doctors are some of the smartest people around. They can figure it out themselves without lawyers (law-makers), who are some of the smartest dumb-asses around.

Welcome to Medicare. Bend Over.

I was fortunate to have excellent private health insurance when my shit hit the fan. That is, until kidney failure (end-stage-renal-disease [ESRD]) made me eligible for Medicare. Insurers struck a deal with Uncle Sam such that after 30 months on dialysis, they don't have to pay anymore, and patients (like me) are shifted to Medicare. Which isn't fair, because unlike 80% of dialysis patients, I'm still busting my ass working full time. My employer and I have both paid for this insurance, and in fact still do, even though now I can't use it, per se.

And who benefits from this arrangement? Only the insurers (or so they think). The service providers get shafted; I get inconvenienced (if I can put it mildly). How do I know my medical providers are now getting shafted? Simply I can do an easy A/B comparison between my 2016 (not on Medicare) to 2017 (on Medicare) claims to see what who's getting paid what for the same exact service.

Here are three examples. I show what was paid in 2016 for three different services. I show beside that the total paid by Medicare and my private insurance (via co-ordination) and the breakdown. My private insurer now picks up the 20% that Medicare does not pay. That's 20% of Medicare's rate, not their own (2016) rate.


Service
2016
2017 - Co-ordination
Private
Total
Medicare
Private
x
$5112
$1638
$1310
$328
y
$158
$88
$70
$18
z
$583
$107
$85
$22


  • For the same service x the payment was reduced from $5112 to $1638 (32%)
  • For service y, 158 down to 88 (47%)
  • For service z, 583 down to 107 (18%)

Suppose your employer came to you 
one day and said, "sorry, I can only 
pay you 18% of what I paid you last year." 

What would you think? That's exactly what happened to my medical care teams.

"Lemonaide"

I find this easier to understand by stripping it down, forgetting about all the MRI machines, mountains of billing and insurance paperwork and all its overhead, lawsuits, tape, IV's bed pans, etc.

Suppose you had a lemonade stand. Suppose it costs you 50 cents to buy the ingredients and make the lemonade. You charge $1 per cup for it because you have to make a living. Suppose you sell 10 cups a day. You're making 10 x (1.00 - .50) = $5 profit. This $5 is yours and you can buy a car, a house, pay your employees, etc. with it.

One day Uncle Sam comes up the street. He stops in and says, "that's great lemonade, and since we live here in the desert, everyone needs some refreshment, so you're going to give anyone who wants lemonade a free cup, and we're calling the program: Lemonaide. Isn't it brilliant?" But you say, "I can't afford to do that." Uncle Sam says, "Well, that's too bad. But for your trouble, for anyone that can't afford it, I'll pay you 10 cents per cup".

So what happens? Well, even before word gets out, 4 out of 10 customers (same percentage as the number of people on Medicare and Medicaid) are now on Lemonaide and so your sales are now: 6(1.00) +  4(.10) = $6.40. Your cost for that lemonade is still 10(0.50) = $5, and so your daily take-away is now: 6.40 - 5.00 = $1.40, down from $5, which is 28% of what you used to make. How do you get back to $5 profit so you can continue with your life and business plans? You raise the price of lemonade to $1.60 for those 6 people paying their own way to cover those paying $0.10, that's how. Because 4(1.60)+4(.10) = 10. For everyone paying $1.00 before, $1.60 is 60% more. Ouch for them. So, you can lower your standards and buy crappier lemons, etc, so that you don't have to raise the price so much. But we now see where this is going. Hopefully.

Now, we didn't factor in what you do if you have some extra lemonade (give it away?) or someone who really looked thirsty but couldn't pay needed some. You do what you can do for them. The effect of the latter could be the same: the cost of doing what you believe is good costs more. But, importantly it was your choice to do it.

When "Free" isn't Free

Having great insurance doesn't change the fact: the reason a lot of people can't afford insurance, or to pay for their own health care, is largely because the government is involved. You can try to blame technology costs or insurance companies. Or greedy doctors. Or malpractice.

Let's face it, though, in the end things cost what they cost. If the government wants to do anything at all, why not instead subsidize technology development, or limit frivolous malpractice suits, or limit damages where appropriate. Educate the public on wise use of health care; there are some good resources on-line already. Crack down on the crooks in a real way; Medicare fraud costs would stagger you (like $60 billion a year).

I'm not saying pull the plug on helping out those in need. We should do that, I think. But we should do that on the most localized level, not from a national level, in the most cost-efficient manner. It's not easy to determine who's in need, so let those closest to the problem do it. And in my case, there is no reason to be on Medicare at all. I have private insurance already, I'm lucky to be one of those 2-of-10 dialysis patients still working, after all.

If you're afraid the greedy doctors will just run away and treat only those who can pay, think again. Most every single doctor takes the Hippocratic Oath, part of which is:

I will remember that I remain a member 
of society, with special obligations 
to all my fellow human beings, 
those sound of mind and body as well 
as the infirm.

I trust them. Maybe we should be more concerned about the (all too typical) corruption in the government programs, like Medicare: to the tune of $60 Billion which is about 10% of their budget, by the way.

And, if you want to read what I consider to be a curious stand on medical ethics, government stepping in, bloating an industry, and then looking for a way to pull out, try this.

Woe are the Dialysis Providers (NOT)

Don't feel so bad for the dialysis providers because they're so tied up with Medicare. Basically this industry is dominated by two giants: DaVita and Fresenius. They're both make hundreds of millions of dollars per year despite the pittance the Medicare pays for dialysis treatments. They've found a lot of innovative ways around this, for example by charging 5-20 times Medicare rates to private insurance, and making staff cuts or cutting the nurse-patient ratios to razor-thin levels.

It's easy: just spend one 4-hour session in a dialysis clinic and you'll see no expense have been considered on behalf of the comfort of the patients. They also make a lot of money by providing pharmacy services, particularly when it comes to prescribing Epogen, a relatively new drug that treats anemia (which anyone with kidney failure suffers from) and others. But, really it's from the private insurers they make their money. Shame the insurers can't negotiate better.

In the dialysis industry, sadly the patient is very much just an afterthought: a means for the providers to get dollars.

Want to learn more? Check out these references. Read this. Or this.

Wednesday, October 25, 2017

Hurry up and Get: Unemployed



A government that robs Peter 
to pay Paul 
can always depend 
on the support of Paul.

-- George Bernard Shaw


For sure, I suffer side-effects from my every-two-weeks "maintenance" treatments for Myeloma. But, the side-effects of the kidney failure and dialysis are worse on a day-to-day basis. Most people are surprised to learn this. I'm not sure why, other than folks either 1) don't know that I'm still on dialysis, 2) what the effects of end-stage kidney (renal) failure are, or 3) perhaps it's just that cancer and its treatment / effects hold such a bigger panic-area in folks' minds, whereas no-one thinks about kidneys or dialysis until it's too late.

I certainly didn't give the 
world of kidney failure a 
second thought before all this.

Someone told me once, All dialysis sucks; some just sucks more than others. Anyone that's witnessed dialysis, and the poor souls doing it, can understand; maybe. I'm lucky enough to be able to do my dialysis at home. Every night. For 10 hours. I have a tube coming out my mid-section that lets me. Everyone else going to the clinic has to get their blood pumped out of their body. I've done that before, and for quite some time; and it's miserable, like some terrible filling station you don't want any part of.

I have a lot of diet restrictions, too, but I don't mind them so much, even if I cheat a little to keep myself sane. Probably everyone should follow a "kidney friendly" diet because it's healthier; my end-stage-renal-disease (ESRD) / dialysis diet is a bit more strict than that.

Anemia is another major side-effect of ESRD. It means that usually my red blood cell counts are low, and necessarily my energy level is poor. In fact the doctors want keep my hemoglobin levels below 11. The normal range is 15-17. If you've ever gone hiking at high elevation, you have an idea of what this is like. I have fatigue, low energy, low aerobic capacity. All the time, all day, every day. How much is ESRD and how much is cancer no-one can say.

Working

First off, let me say my work life is vitally important to me, it gives me a sense of purpose. Not doing it would be devastating. It not only provides for my family, but also I genuinely love doing it. I have been interested in this particular career for 30+ years, and it suits my personality.

I'm lucky because my employer is generally not caught up on bean counting; at least my immediate management chain isn't. And I am lucky because I have the kind of job that can be done pretty much from anywhere and at any time. As long as I have a laptop and a network connection (or even if I don't have a network connection), I can work. And my employer so far has accommodated me without the need for bringing in the Americans with Disabilities Act and all its messiness (yea, lawyers). At least not yet. And so because I can continue working with a flexible schedule and a mobile setting, I'm lucky.

I'm also lucky just purely from a statistical perspective:

 80% of dialysis patients are unemployed.

That's 8 out of 10. Why is that?

Most dialysis patients go to the clinic 3 days a week for 4 hours at a time. So, unless you have a very specific kind of job, this gets in the way in a very real sense; it's not a theoretical problem. Employers are quick to fire dialysis patients for "failure to perform", and there's no protection against it. Employers can't afford to keep people around who can't do the work during the time they're expected to do it. Anemia (lack of energy) is a major reason dialysis patients report they're not employed or are not seeking employment at all.

Lots of dialysis patients (and lots of other people) do not want to work, but I am not one of them.

Further,
The dialysis industry is 
not concerned with improving 
employment status, only with 
addressing "medical" aspect of the problems; 
 and, by the way, to milk 
private insurance for dollars.

We can Dump You Onto Medicare? Oh! Yes Sign Us Up!

Another fact you might not know is all ESRD patients are eligible for Medicare regardless of age. The government made this "a thing" at about the time they required all dialysis companies to provide dialysis service to anyone, regardless of their ability to pay. You can Google the heck out of this and learn all you want (or not), but I'm not covering it here. It's arguably an admirable effort, considering these people have no other options. But like a lot of government programs, the ones who support it are more interested in throwing money at a problem and forgetting about it (until it comes time to say at a party how liberal and caring they are).

What resulted is a complex system of insurance between commercial insurance (eg, provided by employers) and Medicare. Much back-n-forth goes on, with insurance companies lobbying the US Gov. always to wriggle out from under their responsibilities. This back-n-forth and the Gov's desire to balance its own budget during the Reagan and Clinton era further shaped the complexity of this arrangement.

No-one wants to pay 
for dialysis 
because it's 
expensive;
and open-ended.

The basic deal is: if you become disabled by ESRD, and you have private insurance (e.g., you work) then your private insurance pays for the first 30 (or 33 if you do in-home dialysis) months of your dialysis. After this "co-ordination" period, the private insurance can then flip you over to Medicare to pay as primary. If they want.

And of course: what company wouldn't want to do that? It's a huge savings, right? And Uncle Sam has an endless supply of dollars, does he not? He always does, yes.

Let me start by saying: my employer offers the best benefits in the world, hands down, including short- and long-term disability insurance. I'm so grateful for everything they've done for us. They are self-insured: they pay the bills themselves, but a local insurance company here (a well known one) administers the policy. So, my employer pays for my (and for everyone else that works there) medical bills out of their own pocket. Which for me over the past few years have been considerable (7 figures). Though, why else do you have insurance if not to deal with catastrophic illness?

A lot of people are not so lucky, though.

Without this coverage, 
we would have been financially ruined.

This changed somewhat in 2017 when my employer introduced a health coverage policy change that said basically: if you're eligible for Medicare, you should sign up b/c we may stop paying primary on your claims. Turns out, for me at least, it's not "may stop paying", it's "will stop paying". And across the board, not just for dialysis related costs: for all my care. Once you're in, you're in.

If you look closely, this benefits policy is cleverly written. It says, "may not pay". This is certainly because there are some people in the company who are Medicare-eligble, but they're not subject to this policy. So it can be selectively applied; let's not kid ourselves: there be lawyers here.

Luckily, all my providers also accept Medicare. My health coverage would cover me if they did not, which is amazing, although such an exemption takes considerable paperwork. In the end, the care I receive and out-of-pocket expense I have is about the same, though I have to pay $1800 a year for Medicare Part B (yea, that's not free).

You work all your life to pay into Medicare, and that's supposed to be free after, isn't it, you say? Well, that's just for "Part A" (hospitalization). If you want to see a doctor, you need Part B; and that pays only "80%" of the "Medicare rate". My current insurance covers the rest as 'secondary' provider. It's a huge money saver for them. Or is it?

"Free" Health Care? Oh! Yes Sign Us Up!

First, the insurance maze this creates for me is significant, causing me to have to reconcile an impossibly complicated mountain of claim documentation, many of which are not filed correctly. And if it's not filed correctly, you can be sure the insurance company will deny it. So, it's like a part-time job just tracking all that. The insurance company helps with this, but someone has to track that it's all done properly. And since I'm ultimately responsible for the costs, that "someone" is me. And you can't deal with these companies any time you want to. It's Monday-Friday, 9-5, pal, just about the time you're supposed to be working, by the way.

Secondly, I find shifting someone like myself who is employed onto Medicare to be dubious. Why? Because I'm working just as hard as anyone else where I work, and harder than many; why are my benefits any different? Why should US Tax Payers pay my way? I can see allowing those becoming unemployed by ESRD, those who are really disabled, onto Medicare to cover some of the expense of dialysis or other medical treatments. I say "some" b/c Uncle Sam does not pay enough for dialysis treatments to even cover the cost to provide dialysis treatments. The dialysis companies make up the difference by over-charging the private insurers.

The amount Medicare pays to my medical providers is significantly less than my private insurance used to pay. Business-wise it's an awesome choice for insurers (or so they think), which in my case is the company itself; business-wise for my providers, particularly those that are not caught up in ESRD business (i.e., my oncologists), it's not: they got a severe pay cut by this, virtually overnight.


And here is why government-paid 
health-care drives up medical costs
for everyone else.

Wait, It's not Free??


I find it easy to see why this is the case that government-paid care drives up costs for everyone else.

Medical care costs money. It's not some free resource we can just grab off the ground or pick off trees. It comes as the result other peoples' work. So, first of all, if you believe you have right to this, to someone else's work, I think you should check your assumption. This is pretty much what slavery is; so tread carefully on your claim to others' work. Also, imagine how it would feel if people claimed they had a right to take the product of what you do and came to your place of business to get it.

Also, why limit idea this to medical care? Everyone "needs" medical care at some point, true; and it's crucial to survival at times. But, we need food even more urgently, so why isn't food paid for by Uncle Sam? Why do greedy grocery stores or restaurants have to charge us for food? The issue is here, I think, is:

 it's easier to see you're 
actually stealing 
something because food is tangible.

So, back to the insurers. The savings insurers think they're getting by shoving people off to Medicare are actually an illusion, a short-term reward. They're paying it back on average. Why?

Providers have to increase the amount 
they charge to those 
who can pay to cover 
the short-falls of those not paying enough. 

This is true whether "those not paying enough" are poor people, bankrupt people, or Uncle Sam, who perpetually does it on purpose. At least in the other cases, the doctor (or hospital) decides to give their work away out of charity. Don't kid yourself: there is no business negotiation with the US Government here; it's like taxes: you take it or you leave it. Wonder why medical care is so expensive? This is one big main reason: everyone but you is getting free or reduced cost care. Well, sort of. Something like

40 % of the US Population
is on Medicare or Medicaid

If you have to pay the care for it yourself, unfortunately you're on the non-US-government, plan, so you pay more or beg for charity. And who pays their own way any more? Medical care costs have risen so high that no "regular" person can pay for any significant procedure(s), or even for a yearly physical.

Do doctors or hospitals over-charge or gouge prices? That's always a concern, but this is the job of the consumers (insurance companies, or us) to negotiate better deals. Take my own dialysis company, Davita, they made like 800 million dollars in 2016, so let's not shed too many tears. Is that too much? It's true they regularly charge 5-20 times the Medicare rate to private insurers to cover losses due to Medicare underpayments (and to no doubt give exec's bonuses). This is where the money is for them: private insurance, so why can't the insurers negotiate a little better, eh?

And will these people stab their grandma in the back to save a dollar? You can count on it; and then they'll be looking for a way to deny her medical claim later.

Getting Back off Medicare and Out of This Maze

If you are lucky enough to get a kidney transplant, you are eligible for Medicare for 3 years afterwards. This covers the cost of the transplant-related drugs, a significant cost to be sure. But then: you're done with Medicare after 3 years, you're back on your own.

So if you're unemployed, or under-employed, you need to seek out insurance, either from an employer, or sign up for a shit Obama-care policy.

Going the employer route, people have to be cagey, because no-one wants a perspective employer to know they have a pre-existing condition, so you can't mention it! Nothing makes insurance companies draw up and tighten the sphincter more than a pre-existing condition. These companies can't even follow through on the responsibilities they have to their existing customers when they become sick. Soon after they're looking for ways to jettison those sick people from their policies, because, damn, they're expensive!

And insurance companies 
are all about 
taking in premiums, 
not about paying claims.