Do As I Say and Not As I Do

I'm miserable, made worse by the fact that it's my own fault.
While I try to live my life according to the tenets and advice I give to you here at the About.com Patient Empowerment site, I must now confess that, sadly, I am not perfect.
Put another way? Karma is a b*tch.
Today I will share with you the experience of Trisha the Empowered Patient where I am not so empowered as I wish I was, and I'm hoping there's a lesson in here for everyone.
The lesson? Get your shingles shot. That simple. Run, don't walk. Don't delay, do it today.
Last year I told you about my friend Kathy who had developed shingles. She was surprised to learn that the possibility of getting shingles is backward from what most of us think. What is real is that - If you DID have chicken pox as a kid, THEN you are at risk of getting shingles.
My bottom line? Get the shingles shot! About 25% of adults over the age of 60 who did have chicken pox as a child, are at risk of developing shingles, and after some first hand experience with my friend... I knew I didn't ever want to deal with it!
When I told you about her experience, I also told you that I had an appointment to get my shot. And so I did! Except that, since then, I have put it off and put it off - because I've had so many other things going on in my life (writing books, travel, my father's passing, more travel)...
Excuses excuses.
Last week I developed an intense pain next to my right shoulder blade. Throbbing, like I had injured the muscle, but I hadn't done anything at all to cause an injury. Ibuprofen was the only thing that provided any relief. I couldn't sleep because I couldn't lie down, not on my back or my sides or my stomach - so much pain. But I'm not one to just run off to the doctor, so I put up with it, expecting it would go away like other pains have over time.
Then, last night, overnight, my back began to burn. It feels like I've been sunburned! And along the same side of my body, and right below my chest.... that telltale rash. There it is. As plain and easily identified as can be. Just like the photo.
In great denial (Just call me Cleopatra, Queen of Denial!) I thought it might be related to my journey with the lump. I've been taking antibiotics for almost six weeks now. Perhaps it was a fungus or a yeast infection related to those antibiotics?
But I knew in my heart of hearts that it needed to be looked at either way. And the pain....
So I called my doctor first thing this morning, and miracle of all miracles, she had just gotten a cancellation. I dropped everything and hightailed it over there....
My next stop will be the pharmacy where I'll be picking up the meds to combat the shingles, another med to combat the nerve pain, and some cream to treat the rash.
So that's today's lesson. Do as I say and not as I do.
I hope you'll find some relief in the fact that I am not the perfectly empowered patient. (Who is?)
I hope I'll find some relief when I start taking those meds to manage my shingles. If I can't be a good example, then perhaps, at least, I can be a terrible warning.
• What Patients Need to Know About the Shingles and the Shingles Vaccine
• See photos of the shingles rash
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Photo © Adam from PubMed / NIH public domain
REAL Men, Dads Included, Are Smart Patients

Here's my annual Father's Day note to all men, dads included, about the importance of being smart patients, keeping themselves healthy - and some perspective.
This actually started in June 2010 as a Father's Day post when I called on men to take charge of their care, to recognize that, in particular when they are fathers, partners, sons and spouses, then their health is important not just to them, but to their loved ones, too. I wrote the piece in reaction to a report in the Wall Street Journal that men just don't step up to take care of their health and that early deaths or a substandard quality of life was the result.
I included a recognition that some men choose not to seek care because they are too modest. Then I took those men to task for that attitude. They have made the choice not to seek care even in the face of dire symptoms because they are afraid someone will see something on their bodies that they would consider embarrassing.
I know that among the men who read this blog, there will be many who object to my message - which is unchanged today from the original. That is:
MODESTY is NOT an EXCUSE not to seek care in order to stay healthy when a man (or woman for that matter) has others in his life who are dependent on him - spouses, partners, children, older parents - anyone. No exceptions!
Look - I understand modesty. I really do. Recently I've had to deal with this new lump I've developed and it's located in a very embarrassing place - on my tush! That means I'm pulling down my pants every time I see the doctor, and of course when I had a CT scan, too. Think that's not embarrassing? It most certainly is - and yet - I just sucked it up and did what I needed to do.
Embarrassing - but necessary.
I know, I know - many of you men will write to me and tell me that you hate that nurses are all female and that you are sure they are laughing at you behind your backs. (Read the comments made in previous years). I maintain that 1. in most cases, you may think that's true but it probably is not and 2. that if it really is - who cares? You don't know them, they don't know you, and when it comes to that vs living long enough to take care of your loved ones - big deal! In fact, why not just turn the tables and laugh at them? Or even better - report your discomfort to the practice manager and let him or her take care of it.
Several men have suggested that they prefer male providers - and I absolutely understand that and support it. Why not take some time to check in with the various doctors you might choose to see (perhaps the list that your insurance company provides) to find out which ones have male nurses associated, and perhaps check with your local testing centers, too. There many not be as many male nurses as there are female nurses, but they are out there - you just have to spend some time looking for them.
Finally - change only comes with some effort. You very modest men are the perfect people to take your cause to a higher level to encourage more men to choose nursing as a career. With more men as nurses, that concern would go away, right?
Or maybe not. As long as the "not enough male nurses" excuse is an easy one, that's the one many men will use. If it's no longer true because there are plenty of male nurses, I suspect that some men would simply dream up another excuse....
The bottom line here is my annual Father's Day message:
MEN - you owe it to the loved ones who depend on you to stay on top of your healthcare, to make smart choices, and to seek medical care when warranted without regards to modesty.
Period.
And Happy Father's Day, too.
The Cost of CT Scans - Money, Cancer and Peace of Mind

You've probably heard the many news reports in the past few days about CT scans leading to cancer, especially in children. They are all based on a new report published in Pediatrics, a publication of the Journal of the American Medical Association. They show disturbing rates of cancer among children who had CT scans of different parts of their bodies.
To you, a reader of this Patient Empowerment site, this should come as no surprise. We've known for awhile that radiation can be dangerous, and we've even developed questions to ask prior to a CT scan to be sure that the benefits outweigh the negatives when the doctor prescribes one.
Here is the piece so many people are missing, and perhaps the biggest reason doctors continue to prescribe CT scans far more frequently than they should: it's because in many cases (no, not all) they own the CT scanners and can make lots and lots of money in reimbursements when they use them.
Let's break it down:
CT scanners are very expensive. Their prices vary depending on their accuracy (a 16-slice scanner costs hundreds of thousands less than a 64-slice scanner. The 64-slicer is far far more accurate which is why it commands a much bigger price tag.)
So when the scanner is purchased or leased, the monthly payment is also very high. Just for an example, let's say the payment is $5,000 per month.
Further, the cost of using the scanner goes beyond the monthly payment. The total cost will include the electricity to run it, the wages of the personnel who use it, maintenance costs and others. So we can estimate the total cost to run it would be twice the monthly payment - maybe $10,000 a month.
No one - not a doctor, nor hospital, nor testing center, purchases a CT scanner (or any other equipment for that matter) without the intent of making a profit from it. That means their reimbursements must total at least that $10,000 each month just to break even. And then the really good news: that each dollar made beyond that $10,000 is profit - gravy - the real goal for that machine.
The reimbursement for a CT scan will generally be about $1000 or less. That means that by the time the doctor or practice orders 10 - 12 scans in a month, they will pay for their scanner. That means that any scans beyond that will provide that gravy money. And as we all know - follow the money! - profit for healthcare providers is good! At least for them it is. The good news for them is that maxing out the use of the scanner means plenty of income.
But it's bad for our patient and insurance customer wallets. Bad bad bad. Every time you have a CT scan, it costs you and everyone else who is insured by your same payer money. And every time someone else has a CT scan, it costs you more in premiums next year.
So, even if the fear of developing cancer from too much radiation exposure doesn't make you pause and ask questions, maybe the money and finance problems will?
Do yourself and your family members a huge favor. Ask the right questions. Learn about options. Step up to advocate for the person (you or another) who is being prescribed a scan. Then, with the information in hand, make an informed decision instead of simply going along with the recommendation.
That's peace of mind.
Learn more about CT scans and radiation:
• The Danger of Radiation Exposure in a Medical Setting
• Understanding CT Scans and Radiation Exposure
• 5 Questions to Ask Your Doctor Before a CT Scan
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Photo © Microsoft Image Gallery
Chapter 4: Watchful Waiting for The Lump

For those of you following my lump journey, a new chapter has been posted.
A quick recap: My career as an expert in patient empowerment, and the reason I am the About.com Guide to such is based on a diagnosis in 2004 of a terminal form of lymphoma which was based on the biopsy of a lump that had been removed from my torso. That journey turned out to be a major misdiagnosis - I had no cancer at all. These 9 years later, another lump appeared, so I have been tracking my journey through the evidence that is being gathered, my diagnosis (we don't have one yet) and treatment recommendations to highlight the decisions I am making along the way, and my collaboration with my doctor(s).
So I've updated the journey here, with a nod to watchful waiting and how I've handled that with the professionals.
An interesting side note: so far they aren't used to the patient taking the lead! I have truly used their knowledge as a resource - not treated them like gods as fonts of all knowledge. And, to their credit, they've been not only willing, but encouraging that I do so.
Check in to see where we are so far and what steps I've taken recently. Let me know if you would have taken a different approach, too. There isn't just one way to be an empowered patient; there are multiple ways to approach our health care in a measured and thoughtful way.
What suggestions do you have?
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Photo © Microsoft Image Gallery
Medical Credit Cards Can Make You Sicker

If you have ever needed some sort of healthcare that was going to cost a small fortune, but wasn't covered well by health insurance, your provider might have offered you a way to pay for it - a special health-related credit card with NO INTEREST! Such a deal.
I remember getting myself into that "great deal" several years ago. I needed dental work that was going to cost me several thousand dollars. I didn't have the money and I knew it would take me awhile to pay it off on my credit card (which had an interest rate of something like 12% at the time) - so I thought - sure! No interest? Pay over time? Let's do it!
And I did. I paid $200 a month, month after month, and watched the balance get smaller and smaller until - HEY!! WAIT!! where did all those extra charges come from??
It turned out that my agreement (which I honestly did not ever remember seeing when I signed up) said that the entire balance had to be paid off within 12 months or I would have to pay all the interest accumulated over that "no interest" year - at 24%!! My NO INTEREST credit cost me hundreds of dollars.
I was stunned. I was furious. I was burned, burned, burned. And I had no recourse. I had to pay it. What really fried me was that if I had used a regular credit card, the interest in the span of 14-15 months might have been only about $75.
Once I finished paying it, I never returned to that dentist. I felt he had been a part of my burning and it ticked me off.
Word comes this week that I wasn't the only person who got caught in that tangled, costly web. GE Capital, the company that issues the CareCredit Card using the same kinds of terms I have described above, has now agreed to requirements by New York State to a different approach and a number of consumer protections.
The takeaway for us - hopefully - smarter patients? As with any transaction, financial or medical, be sure to read the small print. Understand the terms. Keep copies so you can prove later that you weren't supplied with information they may claim you were supplied with....
Or better yet - just avoid those kinds of slimy ("if it sounds to good to be true it probably is") tactics all together. Pay cash if you can, of course. Or use a regular credit card where you know what the terms are and which is already regulated to the hilt.
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Photo © Microsoft Image Gallery
The Roommate, the Reunion, the Diagnosis, and the Empowered Patient Advice

Last weekend was my college reunion. I won't share the number of decades since graduation but many of us were sharing photos of our grandkids, so that should tell you something. It was great fun to catch up with people who have been a part of my life, but only sporadically, for so very long....
The one friend I could not wait to see after so many years was my former roommate, who I will call Sherry (not her real name). For whatever reason, all these years we have stayed in touch by Christmas cards and an occasional email - but haven't gotten together. I just could not wait to see her and spend some real time together.
You can't begin to imagine my disappointment - and real upset - when I heard from her about two days prior to the reunion telling me that something had come up and she wouldn't be able to make it.
Well - something came up all right! Sherry, who plays golf and tennis several times a week, who is stronger and healthier than almost any other woman I have known as long as I have known her - had been diagnosed with leukemia just a few days before she called.
Leukemia! Shocked - dumbfounded - there is not a word to describe my reaction that can convey it exactly right. It was such a jumble - everything from fear and sadness, to a bit of my own PTSD (my post traumatic stress often kicks in when I hear of friends who have cancer-type diagnoses - leftover from my own diagnosis days) - to the instant empowered patient thing that kicks in - sort of my Momma Bear as Advocate approach, as in "this is what you need to do next, this is what you need to ask, don't forget this and don't forget that!" Sorry, I just can't help it.
I most certainly did NOT dump all that on Sherry! No. My reaction for her ears was quite a bit more measured. First I sympathized (because I really DO know how she feels, having been there myself). I did not share the PTSD thing at all (she'll never know). And then she told me she called me specifically because she knew I could help her sort out what to do next..... so yes, I did provide some of my Momma Bear as Advocate support.
Thus this post. Because the advice I gave her is exactly the advice I would give you, too, if you were diagnosed with something scary and turned to me for advice.
After a long phone conversation, I sent her the following links:
- Finding a Second Opinion Doctor
- Differential Diagnosis (what else can it be?)
- Making an Objective Treatment Decision
- Why Your Doctor Might Not Tell You About All Your Treatment Options
- Using Online Support Groups
As of today, Sherry has already gotten her second opinion from an oncologist in another state (importantly he has no relation to the first one.) She has walked through her treatment options and begins her treatment later this week. She has a very positive outlook and can see a full remission in her future (we all do!) She tells me that as fearful as she is of the process, she feels very confident she has made the right decisions, and has done her best to manage her own expectations for the next many months of treatment.
A difficult diagnosis leaves us feeling scared and vulnerable. Knowing we've been smart about tackling the next steps provides the best platform for good outcomes. I hope if you are diagnosed with something dire, that you'll take Sherry's approach, too.
I'll ask you to keep her in your good thoughts and prayers.
Our next reunion will be in 2018. I fully expect both Sherry and I will be there.
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AML Photo © Wikimedia Creative Commons License
Battling "More"

I take no credit for these ideas. They belong to Dr. Rob Lamberts who I have featured previously in this blog, and who, perhaps better than any doctor I know, understands a patient point-of-view.
He blogged recently about the times we Americans (and perhaps you Canadians and Brits too) want and expect MORE. (See what he has to say about Oliver, Adam and Eve, Hitler and the Kardashians!)
Dr. Rob points out the times when MORE only gets us into bigger trouble, including our expectations of more antibiotics, more testing, more robots and others.
He then lists his 5 Rules for Doing Battle Against MORE.
It's a test you should share with your doctor. Seriously - please - print it and take it to your doctor.
Those of you who read this blog on a regular basis know that such a recommendation that you print something and take it to your doctor is what I usually tell you NOT to do! But I'm making an exception here.
You can use it as a benchmark for how your doctor prescribes tests and treatments for you. But the important part is that you and your doctor communicate about the list, to be sure you both have the same goals
Your doctor will be a better doctor if he or she subscribes to Dr. Rob's points. YOU will be a healthier patient. Healthcare will cost us all less. So do it!
It's time for you to join the battle against MORE.
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Photo Credit: Creative Commons License through Wikimedia
Suspicion, Loss of Trust, Change of Venue

Last week I went for my annual mammogram to the testing center I have gone to for at least the last 10 years. I've always been impressed with how they manage the process, making it as noninvasive as possible, getting me in the door then out again in less than one hour, etc.
Included in those aspects I have appreciated is the fact that once they are finished capturing the images, they tell me, "If the radiologist sees something suspicious, you'll receive a phone call within the next 24 hours. If everything appears normal, you'll receive a letter stating that within a few days."
Last week's experience was just like the prior ones always were - until the phone rang the next day and I could see on the caller ID that it was the testing center.
My heart instantly rose to my throat, especially because of my most recent lump experience. I was filled with dread.
The caller told me that "First, please know that we don't see any problems" - but that I needed to return to the testing center for new images, because it seems they didn't get enough of the peripheral area around my breast which they have done in years previous. So they were calling to make an new appointment to repeat the imaging.
Say what?
"So, what you are telling me is that the technician didn't do the imaging correctly?" I asked.
"Oh no! That's not it! We just think we need to cover more area."
"So, what you are telling me is that it wasn't done correctly the first time, so you need me to return?" I asked. (Yes, I was repeating the same question.)
She hemmed, hedged and hawed some more, and finally I asked to speak to the radiologist. The radiologist phoned me back an hour or so later and explained exactly what the caller had explained.
"So, what you are telling me is that I need to take yet another several hours out of the middle of my day because the technologist didn't do her job right?" I asked the radiologist.
She hesitated for a few moments. "Well, yes. I guess that's what I am telling you." (OK - so I give her brownie points for replying honestly.)
"And you don't see anything at all suspicious that would indicate I need to come back for any medical reason?"
"That's right. I don't see anything suspicious."
"And if I do come in, exactly how does that get paid for? Will you be billing my insurance?"
"I don't know how that's handled. I would have to turn you over to billing. But it will require a new set of images."
My final answer, "No, I don't plan to return. I have no reason to believe my time, and the additional billing are worth the effort. Please arrange to have my records sent to me." Whereupon she told me how to make those arrangements.
Suspicious - that's the only word I can think of to describe how I feel about the whole thing. Now that mammograms are covered by the ACA (healthcare reform), I just have this sense that requiring that a woman return for a second set of images is a very easy way the lab can get reimbursed twice - once at the much reduced rate they get because of the ACA, and a second time because in my records it would show they saw something suspicious. That's the only way they could submit for reimbursement twice.
Which would then go into my records - that there was something suspicious. Yikes. I'm not having it.
Further - next year I will arrange to have my mammogram done at another center. I have lost all trust in this one. It's why I've asked for copies of my records so that the new radiologist will have something to compare next year's images to.
Years worth of positive vibes about that testing center, down the drain because of suspicious activity, including the fact that I'm not one to keep my mouth shut (nor my fingers still) when I'm not a happy customer.
(Just because I'm paranoid doesn't mean those testing centers aren't out to get all the reimbursements they can!)
Have you run into this? Testing centers asking you to return because they didn't get the results they needed? Few of them would ever admit the test hadn't been done correctly. But it doesn't mean you can't ask. And of course, they would all be interested in making more money from each patient.
If you have had this experience, will you share it below? What test was it? (In particular, was it one of the ones on the list of those that we patients do not pay out-of-pocket for?) What was the excuse they gave?
You might also find the following to be of interest:
• How to Get Your Medical Test Results
• Why Does My Doctor Send Me for So Many Tests?
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Photo © Microsoft Image Gallery
Hospitals and Their Dirty Little Secrets

Just a heads up today on an informative, well-developed, interactive presentation put together by a combination of Frontline and Pro Publica...
Called Hazardous Hospitals, it's part video, part resource piece that allows you to learn about the (at least) six ways your assumptions about hospitals are probably untrue, with additional links to supporting information.
It begins with, "Warning: Your Hospital May Be Hazardous to Your Health". From there it goes through why hospitals aren't safe places, (where it also shares personal stories that will break your heart), the fact that hospitals don't share information (which means they can't learn from each other on what works and what doesn't), denial and more. It's a great overview of why we must know what to expect and then plan to protect ourselves while in the hospital.
Finally, the piece called "By the Numbers" at the end of the presentation is truly upsetting. Statements about what percentage of hospital workers are afraid to speak up when they observe something that can harm a patient, ranging to how often safety violations are ignored and how many believe that "management is only interested in patient safety when something goes wrong."
Keep in mind that these are the hospitals were YOU and I go for care. My overall impression is that it might be safer to stand in the center of the interstate highway than to spend any time in a hospital.
Watch Hazardous Hospitals and interact with it. It won't take you more than 10 minutes. The awareness you gain may save your life. (The producers suggest you use either a Chrome or Safari browser, although I used Firefox and it worked just fine.)
Then, when you're ready to learn how to protect yourself, give some of these articles a try:
• A Safe Surgery Guide for Patients
• The Patient's Guide to Hospital Acquired Infections
• Prescription Drug Errors Take Lives
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Photo © 123RF.com
Do You Take a Generic Drug? It May Be Fake or Adulterated

I've just finished reading an article in Fortune, written by Katherine Eban, that has curled my toenails and singed my eyebrows.
I first introduced you to Katherine Eban after reading her book Dangerous Doses a number of years ago. Dangerous Doses is about counterfeit drugs, how they work their way into our American drug supply, and how Americans are dying and getting sicker because of the FDA's total lack of teeth and ability to regulate or stop them. (Not that they haven't figured out some ways to stem the flow - but pharmaceutical companies have intentionally put roadblocks in the FDA's way to protect themselves instead. Follow the money, of course.)
This latest Eban article, called "Dirty Medicine" it is the story of a Ranbaxy, a generic drug manufacturer located in India, that has approval from the FDA to manufacture dozens of generic drugs for Americans, and was, a few weeks ago, fined $500 million for defrauding those Americans who have taken its generics. Ranbaxy intentionally watered down and adulterated its drugs so they could maximize their profits.
Of particular note is that Ranbaxy supplied in the US $600 million worth of generic Lipitor, called atorvastatin, including the 41 lots that were found to have glass shards in them in 2012.
Now, the fact that any drug company would try to maximize its profits comes as no surprise whatsoever to empowered patients who understand the entire focus of the American healthcare system on money.
Further, remember that a $500 million fine is peanuts compared to the money Ranbaxy made by selling the adulterated drugs. For them that fine is just the cost of doing business. For us, the cost is life, or quality of life, or death.
When I read about something so heinous, my thoughts begin circling in different directions:
- Where was the FDA for all those years those drugs were being sold to Americans, and harming us (and possibly killing us?)
- That $500 million dollar fine - exactly who gets that money? Does it go back to the healthplans that paid for the drugs to begin with? Or even better - to the millions of Americans who took those drugs and may have also paid for them from their own pockets? I suspect it only goes into the pockets of the FDA.
- What happens on behalf of those people who have gotten sicker or died as a result of taking adulterated drugs?
- There were 7 criminal charges filed. Ranbaxy has admitted wrongdoing. Why is there no prison time for the Ranbaxy perpetrators?
- How can we trust that any future Ranbaxy manufactured drug will ever be comprised of what it says its comprised of?
And then I begin trying to think of ways we patients can better protect ourselves. I hate to say it, but there's only one way I can think of. That is - to insist that if there is any question about where your drug was manufactured, or questions about the company that manufactured it, then instead you purchase the branded version of the drug that was approved to be manufactured in the United States. There seems to be far more oversight by the FDA within our boundaries. Those companies likely (maybe?) take quality more seriously.
I have a feeling that my pharma-in-the-know friends will think I am naive for making that suggestion. I see them scoffing now.
But I'm putting my money where my fingers are.
I am currently on the second course of an antibiotic I'm taking for Lump #2 called Amox TR-K. It is the generic version of Augmenten. So far as I can tell, it hasn't done squat. I'm on the second course because the first course did not shrink the lump. Further, I've had no side effects. My body has shown no indication of any sort of improvement (or detriment) as a result of taking this drug, so I can't be sure there's anything effective in it.
And it, too, was manufactured in India by a company called Aurobindo, which has also, previously, run afoul of the FDA.
Now, of course I can't be sure that my body has not reacted because there's a problem with the drug... but...
I tried to find an American manufacturer of the generic. None that I could find. I did find that Augmenten, the branded drug, is manufacturered by GlaxoSmithKline. While GSK isn't one of my favorite drug companies (OK - I don't have any favorites), at least I have more confidence that the drug I'm purchasing will have something in it that works.
So, when I see my doctor again in a few days, I will ask her to write a new script for the branded drug Augmentin. Then we'll see if there's a difference.
I'll keep you posted. Also, I would be interested in your stories about generics that didn't do what they should have. If you can, take the time to look at the bottle with the drug in it. In VERY VERY TINY TYPE you'll find the name of the manufacturer. Look 'em up! See if yours is possibly a problem generic, too.
And, of course, should a problem arise with any drug you take, don't forget to report it to the FDA. Then we'll keep our fingers crossed that they pay attention.
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Photo - look in the very tiny type for the name of the manufacturer. You'll see it circled in the photo above.

