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I received a letter yesterday from a gentleman (I'll call him John) who attended my workshop on "Choosing Dr. Right."  It broke my heart as I read it.

It seems John's  85-year-old mother had been rushed to the ER with pneumonia, and she had been injected with medications that killed her.    John said that prior to the pneumonia she had been vital, alive, enjoyed dancing, driving, and was very healthy.  Clearly, her death had been an accident.

An accident is bad enough -- but it had been caused by a doctor who is already on probation by the state of New York.  It seems the doctor has been in treatment for drugs and alcohol, and John suggests that the doctor was impaired as he treated John's mother. 

John wanted me to recommend ways he could make sure no one else loses a loved one at this doctor's hand. 

I should mention that his lawyer told him there wasn't much he could do.   There is no lawsuit because there can't be damages that would even pay for the legal representation.  I guess the State of New York doesn't put much value on the life of an 85-year-old woman.

I sent John some ideas which involved reporting the incident to the State of New York (here's a link for complaints):

http://www.health.state.ny.us/nysdoh/opmc/opmc.htm

He also needs to report it to the local Medical Society, and to the hospital where it happened.  They may know about the incident -- but hearing from the family, and having to deal with the anger and sadness are much more difficult.  Maybe the next time they want to hire a doctor with clear impairments on his record, they will think twice.

Doctors are human beings.  They have foibles like the rest of us.  Doctors drink, do drugs, gamble, and smoke, and do the same bad things that the rest of us do.  That makes it imperative that we double check their credentials and reputations.  In this case, I don't know of anything John could have done to prevent his mother's death.  So he must seek closure instead, by advocating for others by trying to shut down this doctor's ability to practice.

PTSD -- it's like an earthquake of our souls.

I'm referring to Post Traumatic Stress Syndrome (or disorder, I guess).  If you've heard of it, very likely it was in relation to returning warriors -- soldiers who have come home from war who have trouble meshing their horrible experiences with their more sheltered American lives.  Loud noises make them jump, etc.

Twice it has been brought up to me in the past 24 hours. 

I'm the Medical Research on the Internet expert on allexperts.com and a question was asked by the wife of a man who must have died under horrible and extraordinary circumstances.  She wants advocacy resources to help her learn more about her husband's experience.  She hopes one outcome will be to allay her PTSD, too.  I hope to help her.  And I hope it works.

I've had my own experiences, too, since my misdiagnosis.  Last night my husband and I were flipping through possible pay-per-view movies to watch this weekend, and we came across The Family Stone.  It came out in December '06. Diane Keaton is just great in anything she does -- and in this particular movie she plays the mother of several adult children.  They are celebrating Christmas together one year -- and -- fast forward to the next Christmas, she has died of breast cancer.

My daughter, Ashley, and I went to see The Family Stone last Christmas.  I loved it -- but -- at the end when we learned Diane Keaton had died before the next Christmas, I had a complete meltdown.  I could barely walk out of the theater, and I was wracked with tears for almost an hour afterwards.  It just hit so close to home -- because my misdiagnosis had included the warning, "if you don't start chemo, you'll be dead by Christmas."  There but for the grace of God....

I've even had trouble writing this blog today.  PSTD -- it rocks your world.

Two interesting contacts today, both with their influence on my work.

We're looking at installing new steps to our front door.  We live in an older home, and the concrete has seen better days.  Those steps are dangerous, and we'd as soon replace them, rather than risk injuries! 

One gentleman came to give us an estimate, and sure enough -- no surprise -- he has a medical story, too.  His father was misdiagnosed, or more to the point, suffered a missed diagnosis of prostate cancer.  Three doctors and one hospital all tried to treat him for Paget's disease, which he didn't have. He died several months ago. Another sad loss, perhaps preventable.

Then a completely separate conversation this evening with a gentleman named Andrew Shorr, who is doing many of the same patient empowerment types of things I am.  He hosts a radio show in Seattle, and is writing a book.  He's got a website called www.patientpower.info -- check it out!  Andrew has been advocating for more than 20 years, and 8 years ago was diagnosed with leukemia.  But he's doing well know.  Kudos to Andrew.

Prepping for this week's radio show.... much to do! 

It's been a busy few days.  Truly enjoyed meeting the members of the retired teachers' group (NYSUT members) and look forward to my next opportunity to speak to a large crowd of folks.

Then today we taped this Sunday's radio show.  It's so packed with information, we had to cut out all the nice little transitional pieces -- and -- I had to edit my Every Patient's Advocate Tip of the Week to about half what it was originally!

So I'm going to tell a little more about it here -- because it's really bad news, and it's important.

You've heard about identify fraud -- where someone gets hold of your social security number or credit card number, then wreaks havoc on your bills and your credit....  well now along comes Medical Identity Fraud, and the feds tell us that there are 200,000 reported cases a year.  It seems that someone can establish YOUR identity as THEIRS by getting a hold of your insurance ID numbers.  They visit a doctor saying they are you.  And then....

Your insurance gets billed.  You get billed for copays, etc.  Their medical records get mixed up with yours -- meaning -- whatever is wrong with them, now it's also recorded as being wrong with you!  Or -- whatever your vitals are (temp, blood type, blood pressure, etc) -- now they become yours. 

So now suppose you go to the emergency room, and the person who has stolen your ID has been there before -- and you get transfused with the wrong blood type?  or they think you have AIDS?  or they send you for some kind of psychological workup because your "twin" went crazy while there -- or ? or? or?

Yup -- VERY scary stuff.  So listen to the radio show to learn what you can do about it!  (how's that for a tease?)

Tomorrow I'll be fulfilling my first "invitation" to speak on a patient consumerism topic and I'm really looking forward to it!  A group of retired teachers have asked me to talk about medical records -- how to get a hold of them, and how to use them. 

I've been putting together the outline, and a handout to give them, with information they can (hopefully!) use, some legal stuff, and some credibility info...

Among the information I've included is a copy of one of the pathology reports from my lymphoma misdiagnosis.  I want them to see how errors were made, and how simple it was for me to find the errors.  As I read through it, and recalled the MOMENT that changed my life -- the GOOD moment when I figured out I had been misdiagnosed -- I choked up all over again.  Tears spilled for a good 10 minutes.

That happens from time to time.  Some memory comes flooding back.  The emotion of it can be overwhelming at times.  They are such extreme emotions -- the fear, the relief, all rolled into one experience. 

In the end, as you know, it all came out just fine.  How many people do you know who were given a death sentence, only to find out it was all based on somebody else's mistakes?

Yes, it's time.  I'm going to begin contacting newspapers around the country to see if I can't get my columns syndicated.  I've got almost seven months of columns written and I would love to expand my audience beyond Central New York.

One thing that would be helpful would be comments from my readers.  If you read Every Patient's Advocate, either in print in the Post Standard, or online at syracuse.com , and you have something to say (good or bad) -- please write to me and share.  I'd like to use your comments to convince additional newspapers to carry my column.

If you're in Buffalo, and want to write -- please dig yourself out of the snow, first.  My thoughts and sympathies are with you! <-- photo of Williamsville, NY -- where I went to high school ( a l-o-o-n-g time ago!)

I hear from column readers or radio listeners frequently, and often they send me links to stories they have read about a medical error.  The frustration level with bad medicine is growing;  yet, hospitals and private practices seem to make so few changes. 

"Insanity is repeating the same behavior and expecting different results."

If doctors and hospitals don't take steps to fix these problems, just how do they expect those problems will be fixed?

It is an absolutely beautiful Fall morning here in Central New York.  Chilly, sunny, the smell of falling leaves and it feels like football!  Sure enough, SU will play Pitt in the Dome today.  The more things change, the more they stay the same.

I've just received an email from my dad, with the latest report on my mother's progress (or -- what's the opposite of progress?  that seems like such a positive word for such a negative disease) -- anyway -- her progressing Alzheimer's disease.  Dad attached a copy of a report from Mom's doctor and said this is the last time he'll be able to do such, because the doctor is concerned about privacy issues and sharing this information with him.

I can't tell you how good I feel about saying this -- maybe this is the SOLE reason I do this work.  But I get to tell Dad that his doctor is WRONG!!!  That information can be shared with my father, because he is married to Mom -- he is her advocate.  The laws (called HIPAA) are about privacy, but they are intended to help patients -- not hinder them.  And if Dad isn't provided with the right information, he can't help make informed decisions.  I'll be working with Dad to set that doctor straight. 

HIPAA laws are confusing at best.  And there are too many interpreters out there who would rather err on making patients sicker, than spend the time really figuring out the law. 

It makes ME sick.

OK -- off to the golf course on this beautiful day!  Just think.  If I hadn't taken on 'the system' I wouldn't be enjoying it so much!

The radio taping with Cindy had to be postponed this morning -- we'll reschedule next week -- BUT....

The taping with Rev Terry Culbertson was just great.  She shared great stories, and fascinating information about the synergy between prayer and/or spirituality and a person's ability to heal, or get beyond his/her illness.  Turns out there is quite a bit of evidence-based information about that synergy and its positive effect on believers.  Thousands of studies prove it!

So if you are in Central New York, tune in on Sunday, Oct 22 to hear the interview.  If not, link to the HealthLinkonAir website (www.HealthLinkonAir.org) and you'll be able to find the program in the Archives anytime after that date.

Tomorrow is radio taping day so, as usual, I'm frantically preparing questions and scripts.  The staff at University Hospital chooses most of the guests and topics, but tomorrow I'll be doing two interviews that touch VERY close to home.

One interview will be with the Rev. Terry Culbertson, who is the spiritual care manager at University Hospital.  She directs the various patient spirituality activities at the hospital.

My interest in meeting her and talking to her is really to learn more about my own work in the context of spirituality.  Those that know me know that I feel called to this work I do.  I'm not a big church-goer, born again, religious zealot type person at all.  Actually, very few people may really 'get' my true belief that my work comes from my belief that everything happens for a reason.  Perhaps it's less about a belief in God (although yes, I do believe in God) and more about a belief that it's up to me to help others.

Last summer I was interviewed by a writer named Jay Shaylor about my experience and advocacy work.  The story he wrote now appears on the newly launched website of Dr. Manny Alvarez.  If Dr. Manny's name sounds familiar, you may know him from FOX news. 

Link here for the article.

Also, I'm working with two advocates on the real problems with HIPAA regulations and how they get in the way of patient advocacy.  I wonder how many people have died because the right people could not get ahold of the information?  More on this as we begin to make progress -- but if you have anything to add, or you'd like to participate with those of us who are getting our HIPAA ducks in a row, please contact me.

Yesterday, my sisters, and our husbands and I walked in the Alzheimer's Memory Walk in Waterloo, NY.  We chose Waterloo because it is central to where we all live.  We met some nice people, and felt good about participating and raising money for this very worthwhile cause.

Why Alzheimer's?  Because our mother, Betty, is in the advanced stages of Alzheimers Disease.  She lives in a memory center in Sarasota, Florida.  My dad lives in a beautiful apartment in the same building and is able to visit her every day.  But it is a sad, and horrible disease -- known as the long good-bye. 

Here we are: 

(left to right)

Ken (married to Barb), my sister Barbara, Bud (married to Carol), my sister Carol, me, and my husband Butch.

Yes, Alz disease has stolen our mother.  She lives in body, but has lost the spirit that made her uniquely the wonderful woman who was our mom. 

I've learned quite a bit about this disease, and find there are several other conditions that mimic Alzheimers.  In the context of advocating for oneself and loved ones, I suggest you do some research yourself if you or someone you know suffers from any type of dementia.  Not all dementia is created equal!  But in this too-hurried-doctor-visit healthcare world we live in, doctors would sometimes rather LABEL than diagnose correctly. 

As sharp patients, it's up to us to be sure diagnoses are correct!!  Don't just accept any doctor's diagnosis without learning more, and confirming it yourself.

Why THINK you are suffering from one thing when in fact, you might be misdiagnosed -- and the real diagnosis might be less dire?

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Find all new blog entries here:  http://everypatientsadvocate.com/blog

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