Be Your Own Health Advocate

Be Your Own Health Advocate

Sometimes you will need help as you advocate for your best health options.

Understanding health problems can be complex, but we must be our own health advocates—or find someone to be an advocate for us.  With all the information available today, there is no room for excuses.

I recently talked to a client whose Type 2 diabetes was affecting his heart and other organs—serious stuff.  When I asked him to relate his recent blood pressure readings and fasting glucose—he knew those.  But he could not remember results for an important kidney function test and his A1C—a test that shows a 3-month average of his glucose control.  These are important test results for a person with diabetes to know and to understand.  My client is a math teacher, so it’s not as if he is uncomfortable with numbers—what is evident is that he isn’t advocating for himself.

Certainly all of us want doctor visits, necessary medical tests, and any medical procedure to go smoothly.  We are anxious to get these things over with so we can go home and get on with our lives.  But more often than not, we have to take control of the situation somewhere along this chain of events.  If we don’t, things can snowball and we become lost; we don’t understand exactly what our physical condition is and what we need to do to heal ourselves.

The first steps toward being your own advocate are simple:

  1. Find a doctor—often we start with the primary care physician (PCP); if a specialist is needed that choice might depend on insurance plans or the ability to cover co-pays and deductibles; check your health insurance, then research physicians by asking your PCP for a referral; you can also talk to friends and coworkers; word of mouth can often help you make a good choice right from the beginning.
  2. Always ask questions—whether your health situation is minor or major, you need definitions for the terminology the doctor is using, explanations for any procedures you have and certainly careful delineation of your test results.  Often medical practices and hospitals provide brochures that explain procedures and lab results in simple language.  Keep these for your file.
  3. Keep a notebook or iPad file on your diagnosis—bring that information with you at each visit; bring new questions that arise and get answers to those questions at each visit.  Record them in your file.
  4. Keep a calendar—don’t miss and don’t be late for anything that is scheduled: lab draws, x-rays, doctor, physical therapy, occupational therapy, dietitian, pharmacy or social worker appointments.
  5. Research—read, read and read some more.  Use your notebook to find medical terms you want to research.  With help from the Internet you can flesh out the particulars of your condition or at least become more familiar with its terminology, interventions, surgeries, treatments and medications.  NOTE: some doctors feel threatened by clients who research.  Just remember it’s your body.  There are always polite ways to introduce some material you have found and to ask your doctor to comment on it.  If he or she refuses and would rather keep you in the dark—you need another doctor.

Here are some quick tips for understanding common lab results:

BUN–Blood, Urea, Nitrogen: A waste product formed in liver and carried to kidneys, filtered out of blood, excreted through urine.  NORMAL RESULTS  7 – 29 mg/dL;  A low number may mean malnutrition; a high number may mean liver or kidney disease, heart failure;

CREATININE: A chemical waste produced by muscle metabolism. NORMAL RESULTS 0.8 – 1.4 mg/dL; A low number may mean low muscle mass, malnutrition; a high number may mean chronic or temporary decrease in kidney function;

BUN CREATININE RATIONORMAL RESULTS 10:1 to 20:1; A low number may mean malnutrition; a high number may mean blood in bowels, kidney obstruction, dehydration;

POTASSIUM: An electrolyte and mineral. NORMAL RESULTS 3.7 – 5.2 mEq/L; a low number may mean use of diuretics or corticosteroids (such as prednisone or cortisone); a high number may mean acute or chronic kidney failure, Addison’s disease, diabetes, dehydration.

For more interpretations of lab values check out: Understanding Routine Lab Test Results – Lab Test Errors, Abnormalities -AARP 

Often an advocate partner is a great idea too.  If you have a chronic illness or a form of cancer, there are List Servs online that address concerns about your particular illness.  You will meet others who are dealing with the same issues you are.  They can be your partners as you advocate for the best health options.

In the end be in control as best you can.  Read, research, ask questions.  Be your own health advocate.  You won’t regret it.

 

Be Your Own Health Advocate

You need to be your own health advocate or find someone to help you.

 

8 thoughts on “Be Your Own Health Advocate

  1. This article is so very accurate! EVERYONE needs to be their own health advocate and if they feel like something isn’t being addressed by their current physician they need to seek out another one or a second opinion. IF each person does not do this for themselves they could end up with severe repercussions.
    I am 39 years old, exactly 1 year ago, when I was still 38, I had a heart attack. A heart attack that could have been avoided had I been more pro-active earlier BUT that wasn’t worse because I became pro-active…
    I’d been having chest pains for several years. I had gone to the ER for those pains several times, always being dismissed because of my young age, although I had severe risks for a heart attack- Type 1 diabetes, strong family history including early death of my grandfather, smoking (yes I smoked-past tense), overweight, hypertension that wasn’t controlled well and above normal cholesterol…I had risk factors, I had pains, I was ignored, time and time again. I took pretty good care of my diabetes but I had some issues with high blood sugars. I saw a doctor regularly for it and I was taking medication for my hypertension (high blood pressure) but I was not being treated for the high cholesterol.
    I had several doctors tell me nothing was wrong, I was just having anxiety attacks… I started having trouble breathing when I was doing cardio type activities, I started having such severe swelling (edema) that I was put on Lasix- a drug used mostly in older people to control swelling. My blood pressure was getting worse and I started taking new medicine but it didn’t come down much. I asked my family doctor if he thought I should see a cardiologist and he said it wasn’t necessary. I was too young for heart trouble. I was just too stressed out, I should try yoga…
    I started throwing up and suffering from extreme exhaustion, I was resting my eyes at stoplights on the drive to work in the morning. I started having nausea all the time, as if I was pregnant… but I wasn’t.
    The chest pains became worse and I started having thoughts that I was dying all the time, I started making plans for what to do with my daughter and trying to make sure my life insurance beneficiary was up to date…
    I knew something was terribly wrong. When I did internet research and found that all of my symptoms were conclusive with heart disease, I sought out a cardiologist- ON MY OWN. I researched doctors in my area, and who my insurance company would cover and I listened to reviews that I found.
    I called the heart doctor and explained my situation to the nurse and she told me that I needed to come in right away… she found me an appointment the very next day!
    When I saw the doctor and explained my symptoms, she immediately ran an EKG… she said it was abnormal.
    I was sent to the ER from her office! I was scheduled for an angiogram the very next day. The ER tried to send me home. They said I was too young for heart problems and my EKG at the ER didn’t show I was having a heart attack right then because I’d already had it! My cardiologist had to call the ER twice and basically tell them they had to admit me. The next day the head of the department that did the angiograms tried to stop my angiogram, wanting to know why hospital resources were being wasted on a 38 year old woman!
    Luckily, my husband stepped in and explained what was going on with me and called the cardiologist (my cardiologist doesn’t perform angiograms so she wasn’t there when the procedure was going on). My cardiologist was very forward and aggressive in her belief that I needed the angiogram, something was wrong and she made sure my tests were completed.
    She saved my life. I had 4 blockages in the 3 main arteries leading to my heart. I had 1 artery that contained 2 blockages… some of these blockages were @ 99%. Blood was barely flowing into my heart. I would not have made it to my 39th birthday a few weeks later. I was right in planning my death because I was almost there.
    I had doctors and hospitals turn me away. I would have died from a fatal heart attack just as my grandfather had. I would not have seen my daughter grow up nor would I be here today, telling you to listen when people say to be your own advocate. Take care of your diabetes, quit smoking, check your numbers…always pay attention to what those lab tests are and use the internet to find out what you should be doing. IF you don’t like what your doctor is doing, get another one! Learn everything you can about your disease, you don’t get a second chance to do it right.
    I was lucky to catch my heart disease just in time… I was lucky to have this chance to do things better. I was grateful to my parents for teaching me to always questions things, I am happy that the education I’ve received taught me how to me my own research guide!
    You are in charge of your life and their is enough information and doctors out there that YOU can find everything YOU need to know to stay ALIVE!

    • Dear Natalie,
      Thank you for your letter–it truly is, not just a comment. And this is the key to what you told us: You are in charge of your life and there is enough information and doctors out there that YOU can find everything YOU need to know to stay ALIVE!

      And that’s exactly what you did–you kept researching and asking questions and following different leads until you got the answer you needed. You had to.

      Thanks for being brave and persistent. Everyone reading your letter will be happy for you that you are here for your daughter and your family because you would not give up. Beth

      • Beth,
        Thank you for your wonderful reply. It is so important for people to realize that it’s truly up to them, to take care of their health. Doctors and medicine can help BUT if you aren’t your own best advocate, well, you’re leaving things to chance.
        Thank you for posting such an important and relevant article. I always enjoy reading what new things you’ve discovered and decided to share!
        Natalie

  2. Full of helpful, actionable tips, Beth. Also, a wonderful comment/letter that underscores the importance of being your own advocate.

    Since you mentioned blood work (thanks for that info!), here is an anecdote that I like to relate whenever I hear someone say that they haven’t heard back re. their lab tests: http://rheumfuloftips.wordpress.com/2012/01/29/owner-operator/

    There are many disease self-management programs which are available to the general public. These short (usually 6 – 8 wks. long) courses offer a structured program to help people who are struggling to manage.

  3. Thanks so much, Marianna. WOW–that link is a stunner. We should never assume anything. Even doctors’ offices and doctors are human and make errors. Again, thanks for sharing. Beth

  4. Thank you a bunch for sharing this with all people you really recognize what you are talking approximately! Bookmarked. Kindly additionally visit my site =).

    • Glad you like the content. I have a lot of personal experience with researching and discovering the right doctor and advocating for myself, my husband and my mother. Though I have an RN, there is so much information out that that it’s not difficult to get up to speed on the health issue that concerns you. Thanks for your post.

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