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Archive for the 'Death' Category

“Give Us Our Damned Data” Causes the First Meltdown in Awhile


Regina Holliday and Dr. Ted Eytan

Photo compliments of R2DC on Flickr

Regina Holliday’s husband, Fred, age 39, died of cancer in June 2009 leaving his wife, and his two young, beautiful children behind.  During their journey through the healthcare system to try to get Fred the help he needed, too many hurdles were put in their way.  Their story makes you want to scream.

Among the horrors of their journey was the fact that Fred was transferred from one hospital to another – without his medical records. With no records, Fred could not be treated. Regina attempted to get the records transferred, including returning to the first hospital to try to transport them herself.  Instead she was repeatedly stonewalled. Ultimately she was told that she could return to pick up the records in 21 days, and it would cost her 73 cents per page.

None of us can imagine how devastating and frustrating that must have been for her. Fred suffered physically, Regina suffered emotionally.  But today that devastation has become her passion and her mission in life.

Regina is not so much a fighter as she is an artist.  Don’t get me wrong – the girl can fight!  But she fights with the tools only she knows how to use to make her important points.  Those tools are canvas, brushes and paint – and talent that just doesn’t quit.

Even before Fred passed away, Regina began her fight by painting a series of murals on the sides of buildings in and around the Washington, DC area, where she lives.  Her first mural was called 73 Cents.  It’s located at 5001 Connecticut Ave. in Washington, DC.  It depicts some of the many horrible outcomes and experiences she and Fred went through to try to get those medical records.

Since then she has painted other murals, and other paintings – enough to do a showing last week, sponsored (supported by) Clinovations, a company known to us in the empowerment business, but perhaps less known to you.  Clinovations is working to change American healthcare.  They “get” what Regina’s work is all about.

OK.  So here’s where I begin to fall apart.  Please bear with me….

The largest painting is called Give Us Our Damned Data. It features 19 authors (and yes, I’m included — center to the right). All of us have suffered at the hands of the healthcare system, and all of us have written books about our experiences in hopes of improving the system for others.  Here’s a thumbnail version.  You can see a larger version here.

Give Us Our Damned Data!

Photo compliments of Cindy Throop on Flickr

You may recognize a face or two. Each of us is holding a tablet with portions of our book covers.  Each of these folks (Regina lists them all here) is a colleague of mine. Many I have met in person. We support each other, care about each other, stay in touch with each other. We are members of a fraternity that none of us would wish to share with our worst enemies. But we feel so lucky to have each other.

I shed four reasons worth of tears:

1.  I am so proud of my friend Regina for working so hard and sharing her sorrow in such a meaningful way.  I know it’s been a catharsis for her, and I know many others will NOT suffer because Fred, Regina and their children did.  I’m proud to be her friend, and at being included in her wonderful, poignant painting.

2.  I cry for each of the people in the painting.  Each of them has lost someone, or almost lost someone to a heinous mistake, impaled by a healthcare system that is supposed to fix and heal.  Each book is a catharsis, and each author hopes to spare someone else – maybe you – the pain of the loss of health, well-being, trust, and perhaps a loved one, too.

3.  Some tears are post-traumatic stress.  Each time I think about Regina and Fred’s story, mine comes rushing back, too.  Even though I share my story frequently, recounting the facts isn’t the same as facing the emotions.  The fear, helplessness, frustrations – when I first looked at Regina’s painting, I just fell apart.  It’s been a year since the last PTSD meltdown.  But there have been four more episodes in the past 30 hours. I keep thinking it’s getting easier… but… now I’m not so sure.

4.  My fourth reason — strangely enough — is relief.  As I carefully studied each of the paintings in the collection, I was hit with a truth that is so fundamental to all of this.  MY story is the polar opposite of Regina and Fred’s.  They could not get Fred’s records. I GOT MINE!  And that’s the point… !  If I had not gotten mine, then I would never have figured out I didn’t have cancer.  I would have been treated for a disease I did not have.  I would have been debilitated by chemo for no reason. At the end of my chemo, I would have been declared cured of an incurable cancer. But none of that happened BECAUSE I GOT MY RECORDS!

I’m healthy, and happy, and my life has never been better.  And my great revelation is that I am all those things because I was able to get copies of my medical records.  No one stood in my way or refused me copies or tried to charge me for them.  Along with my friend E-patient Dave DeBronkart – we are the poster children for the absolute GOOD that comes from sharing records with patients.

Over the next several years, you will hear discussions about whether patients should be able to access their medical records through the internet, or get copies much more easily than they do today (which, as you can see, isn’t always easy)… please remember this story.  Remember Regina and Fred.  Remember Dave DeBronkart’s and my good outcomes. It’s called meaningful use.  And it’s important.

And then fight your good fight to be sure we can always get those records.  They may save your life, too.

Interested in learning more about Regina’s work?

•  Here is Regina’s blog.

•  Here are Cindy Throop’s photos of the evening’s festivities.

•  Here is Dr. Ted Eytan’s discussion of the showing, including several dozen photos (and larger versions of the one above.) Please notice all the smiles.  Some irony, of course, but the recognition that life does go on, and important work is being done.

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Conspiracy Theorists and Flu Vaccines – Pick Another Battle Please

A couple of weeks ago I posted a flu vaccine commentary and poll after listening to Dr. Dean Edell on the radio. He was talking about people who refuse to get vaccinated. He made the comment that vaccines have been proven effective for decades, and he’s tired of trying to defend them. That if people refuse to get vaccinated, and die — well — that’s just a way to clean out the gene pool.

Readers of the post took offense, calling me arrogant and ignorant. Among them are people who are truly afraid, people who are allergic, people who feel as if they have done their due diligence and have dismissed vaccines (empowered patients!) — and conspiracy theorists.

I wrote a follow up post, citing highly credible sources for all to see, showing why I believe flu vaccines are so important. The bottom line is that the flu is dangerous — both the H1N1 swine flu and the seasonal flu are killers. Vaccines are the only defense we have today (who knows – maybe we’ll have something better in the future?) And the statistics tell us that we have a 591% better chance of dying from the flu than we do dying from the flu vaccine. You don’t have to be a Las Vegas gambler to understand those odds.

I am actually VERY pleased that so many people have given researched thought and consideration to the question – even the ones who disagree with me.  However — I must say — I’ve had it up to my eyeballs with the flu vaccine conspiracy theorists…. seriously. And if you are one, I say to you — get a life!

Here are the conspiracy theorists’ arguments. They remind me of a saying I heard many years ago — “Just because I’m paranoid doesn’t mean they aren’t out to get me.”  Further – they have violated the first rule of questionable healthcare practices, and that is – Follow the Money.

Here are some of their lines of reasoning, and my comments:

1. Flu vaccine is only produced to make pharmaceutical companies richer. To that I say — don’t be silly. For the cost, personnel and too tiny profits to be made by producing vaccine, pharmaceutical manufacturers would much prefer to put their efforts into producing something that actually makes a worthwhile profit for them.  Included is the manufacturing are symptoms relievers — far FAR more profitable in the long run.  Why would they want to prevent an illness at very little profit at the expense of bigger profits from medicine that could relieve or fix us?

2.  Flu vaccines were developed from African Green Monkeys - and the real intent is to eradicate the population of the earth! This one gets the “give me a break” award on so many counts… First…  if the government wanted to eradicate the entire population of the earth, they could do it FAR more efficiently by using, oh, say  anthrax or dengue fever – or some other killer.  Why would they go to all the trouble to develop something that actually took science?  Why not a shortcut, and something cheap to do it?

3.  And then I have to ask – why would the government (which government anyway?) want to eradicate the world’s population? If the government eradicated the world’s population, then who would be left to govern?  and who would be left to pay taxes to that government?  and who would be in charge anyway?  (because the government is comprised of people who would get sick, too)…. etc etc….

Sorry — but these theories are just plain laughable.  You want a conspiracy?  I think there’s a conspiracy to make me waste my time looking these things up — because I do my due diligence, unlike some of my readers.

Here’s the deal — I understand that not everyone wants to be injected with flu vaccines, and even that some must avoid vaccines because their bodies cannot tolerate them.  However — for the great majority of us (GREAT majority) — flu shots will keep us healthier — and will keep our loved ones and those around us healthier — than not getting flu shots will.

Further — as reasonable people, we need to understand that unless we have a real concern about negative effects of vaccines, we must accept responsibility for passing possibly deadly flu on to others when we don’t get the flu vaccine.  H1N1 or seasonal — they are both killers.  I’m not willing to be responsible for making someone else sick, nor chancing that they could die.  I would not be able to sleep at night.

Do you?

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Mom – Free of Her Alzheimer’s Prison

MomMy mother, Betty Louise (Stetson) Torrey, died this week.  I’m sad, mourning our loss, and grieving, of course.

But I also rejoice!  Because more than a decade of Alzheimer’s disease had ravaged her brain, and her body, and she was not Mom for many, too many years.  She is now free of that prison.

I wish you could have known my mother.  Intelligent and funny, caring, talented and clever, she brightened a room when she walked through its door.  She had a beautiful singing voice which graced school auditoriums and church sanctuaries, and a mean golf swing which found its way through more than two dozen countries across the globe, and resulted in three holes-in-one!  She loved the Buffalo Bills, the Buffalo Sabres, and Syracuse University sports.  She was a master calligrapher and could cross-stitch her way to the moon and back.

All that and more.

The “more” came in the form of being a loving and supportive partner to my dad and, from my own perspective, a great mom and grandmother, too.  The life lessons she shared were the basics — cooking, cleaning, etc.  But more than that, my sisters and I learned concepts that have stood the test of time and have made us better people.

So my tribute — this post — will be about sharing two of those life lessons with you, so you can understand better what I mean.

Mom was a fantastic and creative seamstress.  Each Halloween she would put together the most glorious costumes for my sisters and me — and sometimes for herself and Dad, too.  When Mom was pregnant, she made herself a kangaroo costume. In second grade, I was a Christmas tree.  A couple years later, I was the organ grinder and my younger sister, Barb, was the monkey.  Seriously.

Fast forward 25 years, I would do my best to sew fabulous costumes for my daughter, Becca, too, beginning when she was only a year old.  But when Becca was in second grade, all she wanted was a $5 costume from Kmart!  All I could think was, what kind of a lousy mother would just spring the $5 for a cookie cutter costume from Kmart?  It was a conundrum, for sure.

So I shared that conundrum with Mom, in hopes she would understand the dilemma.  But she didn’t understand it at all — because to her way of thinking, the point was to make Becca happy.  And if Becca was happy with a Kmart costume, then so be it.

In other words — the outcome was far more important than the process.  A good lesson.

Many years later, and up until about 2001, Mom and I played golf in the mother-daughter golf tournament each summer. This particular golf tournament was an annual event which was won by the same 2-3 mother daughter pairs each year — because they were all good, competitive golfers.

I’m not that golfer.  I play against my own previous scores, but don’t really care about beating someone else.  I’m more about the fun, the fellowship, and enjoying a beautiful day.

However, undaunted, Mom and I would play our best.  If you won the tournament, there were some very nice prizes to be had.  And, if you won the tournament, you were put in charge of the tournament the following year.

So each year, before we teed off on the first hole, Mom would remind me that our goal was to come in… second.

The lesson?  That sometimes you win bigger by not being first.

It’s not easy losing a parent.  I’ve been learning that for many years through the fog of Alzheimer’s, and I’m learning even more about it now.  We’re fortunate that Dad is still with us – as sharp and vital as ever.

We’re at peace with losing Mom, even through our mourning.  Over time, I’m sure that the sadness and frustrations wreaked by Alzheimer’s will be fully replaced and obscured by the happier memories of her first 75 years.

I hope you and those you love will never have to suffer “the long good-bye” of Alzheimer’s Disease.

Rest in peace Mom.  I will always love you.

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Sorry Oprah. Signing Jenny McCarthy? You’ve Lost This Fan

oprahmccarthy

I’ve always admired Oprah.  To me she has been the perfect example of the American dream, while retaining her moral compass and behaving ethically.  Until recently, she managed to make her billions by keeping the best interests of her audiences at heart. She had my admiration and my respect.

But no more.

Keep in mind, that when I mention ethics and morals, I’m not suggesting she avoided controversy or wasn’t willing to stick her neck out politically.  Of course, Oprah has been at times controversial and political.

As she has every right to be!  It’s her show / magazine / network / production company / conglomerate! She hasn’t earned her following by being neutral or wishy-washy.  Even when I have disagreed with her opinions on some topics, I still believe she has had every right to voice them.

But until recently, when she has taken a stand, she has done so to improve her audience’s knowledge of a topic, or to help them understand why she believes the way she does.  Oprah has helped us understand point-of-view, whether or not it’s our own point-of-view.

And until recently, I have admired her ability to bring so many and varied points-of-view to her audiences, without her #1 focus being how she could make money from it.  Granted, she invites guests who will maximize the size of the audience, meaning, indirectly, increased income from sponsors, magazine and TV show advertisers, etc.

That’s fair.

What’s wrong is what she has done recently and that is, she has signed a contract with Jenny McCarthy. McCarthy is no longer a once-in-awhile guest.  Now she’s one of Oprah’s annointed ones.  It marks a shift for Oprah, a shift in the wrong direction.

And now, I am no longer a fan.  For the first time, I believe Oprah has traded her media soul to the money-making devil.  And that has tainted everything she will do from now on.

In case you don’t know who Jenny McCarthy is, she is a former playboy bunny – come – self-proclaimed expert in autism.  McCarthy has a son who she claims to have cured of his autism.  She has written books, marched on Washington, and been very vocal, presumably on behalf of families of children with autism.

For the record, I do not claim to know much about autism at all, and for all I know, maybe she HAS cured her son.

What I object to is not McCarthy’s work in autism — rather — her stance that since she believes her son’s autism was caused by vaccines, she now adamantly advises new parents to refuse to have their children vaccinated for childhood diseases.  Her son was born in 2002.

Here’s the problem with that:

First — there is no proof that vaccines cause autism. In fact, all the proof is to the contrary. The agent contained in vaccines that some argued may have caused autism was called thimerisol. Thimerisol has not been used in any vaccines since 1999.  Yet, the number of children diagnosed with autism is on the rise.  Clearly, something else is causing it.

The second problem — that vaccines have been developed strictly to destroy the diseases that destroy lives, but they can’t do their job if they aren’t being used.  Think of the millions who were injured or killed by polio before the polio vaccine.  Today, the only people getting polio are those who have not been vaccinated.  If children are not vaccinated they will risk polio and it’s their parents who, by choosing not to have their children vaccinated, will put their children at risk.  That’s true, too, for every other childhood disease.

Read Time Magazine’s interview with McCarthy. And McCarthy’s very classy quote,

“I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___.”

(Those are Time Magazine’s bleeps, not mine.)

As one friend put it:  Jenny McCarthy is systematically destroying children’s and families’ lives by taking such a dangerous stand.  How is that any different from Adolph Hitler?

Jenny McCarthy is not an MD. She has no medical credentials whatsoever.  Yet young parents are listening to her because they are desperate to find someone who can help them with their autistic children.  If they listen to what she has to say about helping their child recover from autism — great.  But to listen to McCarthy’s medical advice about vaccines?  That’s foolish.

Now — returning to Oprah. Oprah has had Jenny McCarthy on her show any number of times.  That’s a good way to showcase McCarthy’s point of view, especially when it’s contrasted with those who are experts, those who really do know something about autism and vaccines.

But to sign McCarthy on, as she has with Dr. Phil McGraw and Dr. Mehmet Oz?  They ARE doctors!  What message is that sending to those who can’t discriminate who does and who does not have good information? (And I wonder how Dr. Phil and Mehmet Oz feel about being in the same media camp as McCarthy?)

And won’t it be interesting when McCarthy spouts her medical opinions (opinions, NOT facts) on her show, a parent does not get her child vaccinated, that child and others are debilitated or die from McCarthy’s advice?  I wonder if Oprah will be sued along with McCarthy?  Afterall, it’s Oprah who has given her the platform.

Oprah — sorry — but you’ve stepped over a line of trust and respect.  You made that flip to the darkside, all in the interest of growing your franchise and making money.

You’ve lost this fan, and I suspect, many others.

Update 5/31/09: Apparently Newsweek agrees with me. Oprah has truly stepped over the line.

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Swine Flu – But What About Bacon and Eggs?

pigs

NoteSwine Flu FAQs updated daily

PlusShould We Be Afraid of Swine Flu?
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While the professionals provide us with statistics about Mexico, Texas, California or other places where patients have contracted swine flu, I actually find I have different questions all together:

  • I don’t live in Mexico. Am I at risk for getting swine flu?
  • Will my seasonal flu shot protect me?
  • I’ve never met a pig in person and don’t expect I’ll meet one anytime soon. Should I be worried about getting flu from a pig?
  • And what about my favorite Sunday breakfast – bacon and eggs?

So I went in search of the answers, believing that if I have those questions, you might too.  So I put them together in an article along with their answers: Swine Flu FAQs

And as for breakfast?  Very crispy please.

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