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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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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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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Note:  Swine Flu FAQs updated daily

Plus:  Should We Be Afraid of Swine Flu?

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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Having suffered months and months of treatment for his brain cancer, Asa’s life was almost lost due to the arrogance of the resident who was in charge of his care.

Read Franny’s story and see what you think. Then see if you agree with the steps she took afterward or whether you might have done something else instead.

A Doctor’s God Complex, a Life Nearly Lost

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In her most recent article, she points to doctors’ and nurses’ scrubs, coats, ties — their clothing.  MRSA, C.Diff. and other infectious pathogens cling to the fabric and get passed from patient to patient.

So — imagine that for a moment — the doctor brushes you with his white coat, that very item that represents his/her MD-dom — and passes an infection on to you which will make you very, very sick, or even kill you.

From Dr. McCaughey’s article:

The problem is that some medical personnel wear the same unlaundered uniforms to work day after day. They start their shift already carrying germs such as C.diff, drug-resistant enterococcus or staphylococcus. Doctors’ lab coats are probably the dirtiest. At the University of Maryland, 65% of medical personnel confess they change their lab coat less than once a week, though they know it’s contaminated. Fifteen percent admit they change it less than once a month. Superbugs such as staph can live on these polyester coats for up to 56 days.

Do unclean uniforms endanger patients? Absolutely. Health-care workers habitually touch their own uniforms. Studies confirm that the more bacteria found on surfaces touched often by doctors and nurses, the higher the risk that these bacteria will be carried to the patient and cause infection.

According to Dr. McCaughey, hospitals used to provide laundered uniforms and scrubs to their personnel, but that practice has gone by the wayside.

So, it seems like it would be a good practice to bring back.  Especially since Medicare is no longer paying for care for patients who acquire infections in the hospital, it seems that laundering that clothing would be far less expensive than having to eat the cost of caring for so many infected patients.

Today’s second warning comes from Bottom Line Health, one of my favorite publications.  I like Bottom Line because it doesn’t accept advertising, and it always brings in multiple points of view, e.g. the best of Eastern and Western medicine and ideas.

This notation comes from Jean-Yves Maillard, PhD from Cardiff University in Wales, UK who tells us that those disinfectant wipes we use on surfaces to kill bacteria (think clorox wipes, or those wipes they put near the shopping carts at supermarkets) may actually just spread those germs around.  We may not be killing those buggers at all!  Dr. Maillard suggests instead that we use one wipe per surface — or one swipe per wipe.

When it comes to these killer germs, we patients just can’t be too careful, can we?

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SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate.  I was told I had it.  In fact, I was told by two labs and an oncologist that I had it, and had only a few months to live.

But I didn’t.  And I’ve written extensively about the fact that I didn’t have SPTCL and what I did to figure that out.

Earlier this year, in May and then July, I was contacted by two others who were dealing with the same diagnosis of SPTCL.  Heather contacted me, then Daniel’s mother contacted me (Daniel is a teenager).  They had found my work on the web and asked if I could help them get the information they needed.

So I did.  And we learned that both Heather and Daniel had been misdiagnosed, just like I had.

Fast forward to today — the end of the year, and holiday time. I checked in with both Heather and Daniel to make sure they are still doing well.  And yes, they most certainly are!!

I still choke up.  It’s still a bit overwhelming.  That’s three human beings, all of whom shared a misdiagnosis, none of whom underwent chemo, all of whom are healthy today.

Which is precisely why I do this work.

Here’s to even more great discoveries and saved lives in 2009.

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As you may know, the number of uninsured Americans is typically quoted at 47 million. We learned that last year those numbers were reduced to 45.7 million– not because more Americans can now afford insurance; rather, because their income had declined to levels that made them eligible for state healthcare assistance programs.

But in thinking that through, I realized there is a ripple effect, too. With the tanking of the economy comes layoffs, and with layoffs come even more people whose income will decline and, of course, that means they may not be able to access healthcare. Not all will become eligible for care through the government. In many cases, they will simply be left off the healthcare roles — no more coverage for them will mean no healthcare at all. Not for them. Not for their children either.

Which then led to another thought. The Commonwealth Fund reported in January that 101,000 people died last year from problems that would have been prevented if the person who died had health insurance. Do the math. 101,000 deaths. 45.7 million uninsured. That’s 22 uninsured people who died for each million who didn’t have insurance.

Now let’s look at what’s beginning to take place as a result of those greedy Wall Street CEOs who have caused our economy to decline, and who will be responsible for millions more job losses. For each million people who lose their health insurance because they’ve lost their jobs, 22 will die.

In my not-so-humble opinion — that’s blood on the hands of those Wall Street criminals and robber barons who have reaped millions of dollars for themselves, while denying the rest of the world its stability. This isn’t about people jumping off buildings and bridges because they’ve lost their savings. This is about people — responsible and hardworking Americans — who will no longer be able to pay for the care they need, have earned, and deserve.

Maybe those very guilty CEOs can’t be arrested for bad business dealings. But certainly they should pay for the deaths they will cause?  And what about the families left with no one to support them because their loved one has died?

These dominoes are huge and destructive.

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Enough excuses, you say!

But neither of these efforts, nor the emotions associated, can come close to the roller coaster Daniel’s family has ridden in the past nine months.  Even those emotions pale in comparison to the relief they felt during the past week as they learned that, just like Heather’s story earlier this summer, and my story, too, Daniel doesn’t have SPTCL either.

Learn more about their discovery and the report from the NIH.

So.  A h*ll of a track record in 3-1/2 months, wouldn’t you say?  Three reports of subcutaneous panniculitis like t-cell lymphoma (SPTCL).  Two of them aren’t even cancer.

I wish you could hear the song in my heart, and see my smile and tears of joy!  If not one single other patient ever benefits from my work, then I will always know these two people – Heather, then Daniel — have been spared chemotherapy.

Pressing on. And OH so happy!!

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Never Events, as defined by the National Quality Forum, are those events which should never happen to a patient.  There are 28 errors on the list ranging from wrong site surgeries to drug errors to crimes committed by medical professionals.

Not included on the list from the NQF are HAIs (hospital-acquired infections).  There may be many reasons for this, but there are many groups and organizations that believe HAIs like MRSA, C.Diff and VRE SHOULD be included on the list.  Many of them, although not all of them, are preventable.

Regardless of what the left hand is doing (NQF), the right hand of payers (Medicare and many insurers) have decided that these infections will no longer be covered.  That means that any hospitalized patient who contracts, or at least presents with, an infection during a hospital stay may not be charged for the extra cost of treating the infection, nor will the hospital be paid by Medicare or many of the health insurance companies.

I don’t have the expertise to say whether this is right or wrong.  On the one hand, I believe it’s absolutely necessary to force hospitals to figure out ways to decrease the numbers of patients who contract these infections, estimated to be upwards of 5 million patients per year.

On the other hand, I know that sometimes patients arrive with pre-existing infections that may be apparent when they are admitted.  Can they be tested upon arrival?  Of course they can — although some hospital personnel point out how expensive that is, and that insurance won’t cover that either.  I have no doubt that there will be some problem for patients that crops up from this new ruling.  Hospitals will refuse to admit patients at risk, or they will discharge them too early so they can — at least in the paperwork — ignore an infection just as it begins.  Hospitals will do whatever they need to to protect their *sses — and it will be at the expense of patients.  Unintended consequences, all based on money.  What else is new?

During the past few days, a dialogue has taken place… wait… make that a diatribe…. on the blog of a certain “buckeye surgeon” where complaints and barbs have been thrown at a newspaper reporter who wrote about this October 1 date for reimbursement stoppage.  On just about the same day, the Wall Street Journal printed an article by Dr. Betsy McCaughey, founder of RID (Reduce Hospital Deaths) that gave some statistics about hospitals that have addressed infection problems — and have successfully reduced their numbers, one (claims) to 0 patients over a span of years.

So –I pulled some quotes from Dr. McCaughey’s WSJ article and posted them to the blog — and you would have thought I was the devil-incarnate…. whoa!  A regular lightening rod!  All those doctors so quickly turned their ire on me.  And I thought angry patients got worked up!  They can’t hold a candle to posters like “white coat” and “anonymous” who — God forbid — don’t even use their real names.

No — they attacked me one after the next.  In fact, it began when I suggested that SOME hospitals were actually trying to help patients!  SOME hospitals are actually asking their doctors and personnel to adhere to a checklist that — (you won’t believe this) — actually prevents infection!

Oh — one even attacked me for not being grateful that I was misdiagnosed with cancer.  She told me I should not have been upset at the misdiagnosis — I should have been relieved that I didn’t have it.  (My standard reply, which I didn’t bother with is — “gee — you didn’t get hit by a car today.  Are you relieved and grateful?”)  Of course — what on EARTH does this have to do with infections?  I’m not sure.

What’s the bottom line?  What can we learn from this?  Honestly — I do NOT believe that including HAIs on the list of never events Medicare and some insurances will no longer pay for was the right approach.  While some infections could have been listed and it would have been helpful, instead I think Medicare has only thrown down the gauntlet for hospitals to go underground.  Patients will pay the price in even worse health problems.  We must be more vigilant and be prepared to stand up for ourselves and our loved ones, and once October 1 rolls around, that will be even more difficult.

What the Trisha-bashing on the Buckeye Surgeon’s blog has shown me is that when we patients begin to stand up for our NEED for decent healthcare, we become the enemy.  The point I tried to make on a couple of the blog posts was that I think patients and providers need to remember that we have the same goal — improved patient care.  But those folks didn’t want to go there.  They just wanted to bash me.

I pray none of them is ever hurt by a medical error.  I hope none of them ever suffers at the hands of a medical practitioner who is probably just in a big hurry because he doesn’t get reimbursed well enough for his work.  I hope they don’t lose a loved one, like I did, after she acquires MRSA.

But mostly I hope they will stop taking their frustration out on the messenger.  Afterall — excuse me — I THOUGHT we all had the same goal?

Don’t we?

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