Wednesday, September 19, 2007
The Empowered Patient
Knowledge is power. It sounds trite, but it is true. Think about it. If you keep an eye on the stock market and read up on investing, you are more likely to make money. If you know something about cars, then you are less likely to get bad advice from your mechanic.

The same thing is true with health care. If you know the right questions to ask your doctor and what to look for, then you are more likely to get the treatment you need. A few months ago, CNN Medical Correspondent Elizabeth Cohen began writing a column called Empowered Patient on CNN.com. Each week, we talk with experts and advocates about real life medical issues. It is practical advice, information you can use NOW - no Petri dish science.

We have been excited by the response and know there are many stories out there to be told. We want to hear from you. What are the topics you'd like us to tackle? Do you have any stories about becoming a more 'empowered patient'?

Elizabeth Cohen's Empowered Patient reports can also be seen on "House Call with Dr. Sanjay Gupta" at 830 a.m. Saturday and Sunday ET.
I believe that individual public education about uncommon diseases are a "must". Nontheless, the CDC and the media have not yet release the amoeba infomation that have killed three boys in Florida lakes.
N.Fowleri is a very dangerous and ubiquitous organism lurking almost everywhere and is the causative agent of human PAM(Primary amoeba meningoencephalitis), and the onset of symptoms and death can occurred in less than a week, in most cases people affected by this amoeba died within six days of infection, informing people that may show early symptoms to get medical help as soon as posible and get antiparasitic treatment can result and a life been saved.
I have a story, but it's about being a patient advocate, the patient being my daughter, A little over a year ago she was diagnosed with a large blood clot starting in the pelvic region and going about half way down her thigh. We had gone to the doctor because her leg was swollen. Now, she has a birth defect, Spina Bifida, so it's easy for doctors to try to relate subsequent medical problems to it. This was not the case of course, she was immediately put on a blood thinner to prevent the clot from traveling and wreaking havoc in her body. But, the cause remained a mystery for about a month. I refused to believe she could just get a blood clot for an unknown reason and started my own search on the web. Her physician had run numerous blood tests, mostly concerning blood clotting abnormalities, and we were waiting for the results. My search during many nights on the computer after work, revealed one very probable cause which was Lupus. I started printing information and getting questions ready for our next appointment. Within 2-3 days following my days of research, the doctors office called to inform my daughter that her blood tests had in fact confirmed that she had Lupus. I am not promoting self diagnosis, but I think that an informed patient or parent for that matter has it's advantages. We have so much information at our finger tips, and if nothing else being informed will enhance the questions that we ask our physicians in the short period of time that we have in their office.
I think it would be interesting to run a story about the effects of direct-to-consumer advertising by drug companies and interview physicians to learn just how much pressure they are under to prescribe the medications their patients come in asking for. A recent study showed that patients get the meds they go in to their doctor's office asking for 80% of the time, which is astounding. DTCA has been defended as a method of empowering patients - giving them information about health conditions and their available treatments - but viewers do not always realize that the information they are seeing in these ads is only a small fraction of all the information that needs to be taken into account when deciding what treatment course to take. And the information in these ads is very carefully chosen to lead people to believe a pill is what's right for them. Physicians I've worked with have said people are coming in a lot asking for "that butterfly pill". That "butterfly pill" is Lunestra, which is advertised for sleep problems. It has a butterfly throughout its commercial. There are many possible treatments for sleep difficulties, most of which are not medication, but you’ll never see that in an ad. The same situation is happening with "the little purple pill" (i.e., Nexium). People, medicine does not need a catch phrase and mascots. This is just standard advertising gimmicks to get you to remember and want what they’re selling.

Even the tag line of most DTCA ads "ask your doctor if _____ is right for you" is manipulative when it’s talking about medications for depression or anxiety. "Your doctor" means your primary care physician, since most people have insurance plans that require them to first see a general practitioner to get a specialist referral and most people do not already have mental health providers. Primary care physicians do not have the time or training to do comprehensive mental evaluations, so they will usually prescribe an anti-depressant or anti-anxiety medications after hearing a patient describe their symptoms. This is exactly what the drug companies want. You won’t ever see a drug company ad that tells you to "consult a psychologist to have your problems diagnosed and receive a treatment recommendation". Psychologists cannot prescribe drugs, so drug companies want you as far away from a psychologist as possible. They advertise the path that will get you on their meds.

Drug companies have empowered themselves by fooling consumers into thinking they have become empowered.
Its not just the patients, but the patients families as well. Back in early April of this year I went to the hospital because I thought I had a clot in my right leg - according to the tech & ER doc who did the ultrasound, I didnt have one and I was discharged. A few days later I collapsed because my O2 was 74% with no other symptoms. Within 24 hours my husband was told they were putting me on life support and wanted to know if I was an organ donor. After an hour of them trying to intubate me, I spent another 13 days on lifesupport. My family was given all kinds of Dx's - ie: possible lung cancer, emphasema. copd, etc etc. They finally pulled me out of the coma and told my family the only thing wrong was I developed pneumonia while in the hospital. Two weeks after discharge I still didnt feel good and went back to doc. He hesitantly asked me if I wanted another ultrasound even though I have ever test known while in hospital. I jumped at having another ultrasound. Hmmmm guess what - there was the clot I said I had. Not only did I have a hx of dvt, I was in the medical field for 15 years. The clot was moving up my leg but hadnt gone to my lungs yet. As much trouble as they were having intubating me, the doc in charge that day was ready to call it and cover me. It just so happened the one who initially was called to ICU to intubate me, knew my husband and fought for the ICU to keep trying. If it wasnt for him fighting to keep trying I wouldnt be here right now. A case to not what you know its who you know *shakes head* I ended up spending over 150k in medical bills, took my muscles months to get back since they all atrophied while in ICU. My family kept fighting with the staff to re-check my leg but they said there was nothing there they already checked. Looking at the scans prior to and after discharge now, hmmm clots visable on both scans. *bites tongue on what I really want to say*

So families - when someone in your family becomes really sick - and something doesnt seem right, get other opinions. I would rather pay more and get another opinion then risk the misdiagnosis.

PS - I went out right after Easter and woke up to Headline News talking about Cinco De Mayo that Saturday. *believe me thats a weird feeling even to this day*

Also - Its true, watch what you say to someone who is in a coma - I remember conversations in the room while I was in a coma, I just couldnt respond. Family was amazed at certain things I was able to repeat. My husband could get me to tear up occasionally and one friend was able to get my BP elevated.
I just saw the piece on corn in our bodies. It reminded me to ask these questions:

If we know lead and mercury are harmful to children, and we are concerned, then what are we doing to remove these Heavy Metals from kids bodies?

Is there a way to test for very low levels of Heavy Metals?
If you look at this link, you will see a story about another rare disease called Stevens-Johnson Syndrome that is frequently misdiagnosed.

http://www.redding.com/news/2007/sep/10/mystery/
Another commonly misdiagnosed disease is called Stevens-Johnson Syndrome which afflicted me more than ten years ago. The Washington Post recently did a story on it; here is a link to that story: http://www.redding.com/news/2007/sep/10/mystery/

SJS is an allergic reaction to a medication that can be fatal in up to 40% of cases. In my case, it was an antibiotic, although it can be caused by Advil or other medications. SJS does not typically strike right away, so pinpointing it can be difficult for doctors.
I just discovered the empowered patient column. Is there an online archive of past columns?

I'd love to see a column on how to ask for a 2nd opinion. It sounds basic, but it's totally unclear to me how to go about doing it. For starters, how do you identify the right doctor to ask for a second opinion? And then what? Go through all the same tests, etc. you've already had done?
I saw the program on misdiagnosis this morning and want to add my story, with some advice. I had a small tremor in my right hand, and my neurologist in Maryland couldn't diagnose it. He had ruled out a brain tumor, Parkinson's disease, etc. So, he encouraged me to see "the" person in movement disorders in New York City. I waited 4 months for an appointment, at the end of which the doctor told me that I had early Parkinson's disease. I was distraught, since I had 2 small children. He put me on some medication he was testing at the time, and sent me home. I decided to see a local doctor at Georgetown University Hospital, who, after many tests, trials of drugs, etc. told me that I certainly DID NOT have Parkinson's. It is now 15 years later, and I still don't. My advice is twofold: if you are seeing a doctor who is involved in studies, be wary of their self-interest in your possible illness; and,if you get a dire diagnosis, don't be afraid to get another opinion. If your doctor objects to your getting a second opinion, then (s)he is a doctor you should not be dealing with.
I used to love Twinkies, can't remember when it happened, but all of a sudden the filling tasted different kind of slimy. I have not bought a Twinkie since. Now, I see why it tasted so different and turned my off. So the lost one dedicated customer.
I am a nationally certified clinical laboratory scientist, and was concerned that a valuable resource was not highlighted in the patient empowerment segment on 9/19/07. When it comes to explaining the meaning of clinical lab tests like sodium and tumor markers, most patients either do not know what to ask, or have only 5 minutes with their physician. In addition, most people don't realize that neither nurses nor physicians nor pharmacists nor any other healthcare professional are given specific training in lab testing protocols and sources for false positives/negatives that cover the entire spectrum of over 1000 clinical lab tests available. Only students in undergraduate and graduate programs in clinical laboratory science get this training. An award-winning website, LabTestsOnline.org, is written by the clinical lab professionals who do the testing, and provides information about lab tests in a user-friendly way. It can provide reliable explanations plus a way for patients to ask specific questions about their own lab tests. A group of volunteer members of the Consumer Webpage Response Team of the American Society for Clinical Laboratory Science help patients formulate those 2 or 3 questions about their lab test results which they can then ask their doctor at the next visit. This service, however, is in jeopardy since the personnel shortage for clinical laboratory scientists is now exceeding the nursing shortage. One question which consumers need to be asking is whether or not the people doing their lab tests have been fully trained. The general public needs to know that in many cases, they may not be since only 14 states require their hospital clinical lab personnel to be licensed. This could be a source of potential future lab errors!
Hello!

My husband is 79 & I am 62 & we have taken control of our health through:

1. Eating organic, local, & seasonal food - we support local farmers & belong to a seasonal CSA (Community Supported Agriculture) program - ours is in middle TN at http://www.delvinfarms.com
2. using therapeutic grade (healing grade; ingestible) essential oils such as lemon, lavender, peppermint, frankincense, myrrh, rose, oregano, thyme, etc. - not only do these oils smell WONDERFUL, but when grown organically & distilled very carefully, they are some of the most powerful anti-inflammatory, anti-bacterial, anti-microbial, anti-fungal, anti-depressive, analgesic, immune-building substances on earth! There's tons of university & med school research around the world to prove this.

These qualities are only present in the highest possible grade of oils, produced ONLY by Young Living Essential Oils, with organic farms in Utah, Idaho, France, & Ecuador

For more info, you can visit my nonprofit's (addiction/recovery field) blog at http://blog.audreysdream.org - see Health section -

or go to our Young Living website at http://www.youngliving.org/audreysdream

I have emailed Dr. Gupta before about Young Living & founder Gary Young, currently living & working in Guayaquil, Ecuador writing medical school curricula on these therapeutic oils, practicing sustainable farming, studying with shamans in the rain forest & distilling plants with no formal names, running a clinic that has facilities for those who can afford & those who cannot, & much more

NOTE - we have not had a cold, flu, virus, etc & have never felt better for the 3 years we began supplementing our healthy diet with the oils & a wonderful anti-oxidant infusion of Chinese wolfberries, other nutritional fruits, & the oils (the lifeblood of plants, which work like our blood to assist in the uptake of nutrients) called NingXia Red

Dale Vinicur, Nashville TN
audreysdream@youngliving.org
I am a Clinical Laboratory Scientist and read with interest your article on misdiagnosed illness. Most health professionals and the public at large do not know that 93% of laboratory errors occur before or after the sample is analyzed and results obtained. We call these types of errors, pre and post analytical. They include such things as ordering the wrong test, collecting the sample at the wrong time, and misinterpretation of results by the primary care provider. Analytical error is very low (if qualified individuals do the testing) because we have learned to control it. The laboratory has less control over pre and post analytical error.

The public and other health care professionals do not realize that laboratory professionals have college degrees and have been through a rigorous education. Sadly, not all labs employ these educated individuals but rather hire unqualified personnel and give them on the job training. They can do this because the majority of states do not license laboratory professionals. Isn't it sad that manicurists, beauticians, plumbers, etc. have to be licensed but those who do testing for HIV, leukemia, heart attack, etc., do not? It behooves the patient to know where their lab work is being done and by whom. The public must support the laboratory professionals' quest for licensure to safeguard the practice of laboratory work. It would be helpful to the public if you would provide a session from the clinical laboratory perspective as a part of this series. Shirlyn McKenzie, Past-President, American Society for Clinical Laboratory Science.
I loved the special Fed Up: America's Killer Diet. I lost weight naturally and now wear size 8. I used to wear a size 14. I watch me diet and am in the embarassing position that I have to eat one good meal every day so I don't look too thin! Keep up the work on our killer diet and eating. Shock people. We must stop this obesity epidemic.
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