Monday, March 14, 2011

Be Your Own Advocate

You may have noticed that I missed last Tuesday's Freezer Cooking 101 post.  I had unexpected surgery last Monday night and was unable to post Tuesday.  Luckily I had scheduled the other posts for the week and they took care of themselves.  I'll be back to posting this week.

We had a whirlwind weekend last weekend.  It started with pain in my lower right abdomen on Saturday night, which led to an ER visit, which led to surgery to remove an ovary that had one big ole dermoid cyst on it.  The doctor did a good job and I am recovering well; but one thing I learned throughout the whole process is that in the health care system, you have to be your own advocate.  I'll give you a few examples from my experiences that weekend.

First, I'll talk about the ER.  I went into the ER with pain in my lower right abdomen.  Our first thought was appendicitis, so obviously, we were there to be tested for that.  It was extremely busy that night.  That is an excuse for taking a long time to diagnosis me, but not an excuse for errors.  To diagnosis appendicitis, you have to have a CT scan.  In order for me to have that CT scan, they had to check my kidney function and make sure I could excrete the dye they were going to use in the test.  So I gave my sample and waited for it to be tested (waited for 2 HOURS!!).  All of the sudden the doctor comes in and says "You have a really bad urinary tract infection.  I'm going to give you a shot of antibiotics and send you home."  I was very confused at that diagnosis.  I've had UTI's before and they were nothing like the symptoms I was displaying.  I pointed that out to him and asked if he was sure it wasn't appendicitis.  He looked very confused and said "No, no, it's not appendicitis.  It's a UTI."  Then he noticed the IV port the nurse had used to give me pain meds and said he would put the antibiotics in there, but he seemed confused that I had an IV port.  He left to get the shot and came back in a few minutes later saying "I'm sorry, I read the wrong chart.  The UTI is for a different patient.  Your kidneys are fine.  You'll still have to be tested for appendicitis."  Then he left.

WHAT!!???  You were about to give me meds for something and send me home and you never once checked my ID bracelet to make sure I was the right patient!!  If it wasn't for me being alert and for my husband (who was going to pepper the doctor with questions before he allowed him to put that needle in me) advocating for me, I would have been given medicine I didn't need for a condition I didn't have and my real condition would not have been treated.

That was the first instance that night.  The other could have been even worse.  When you are admitted to the ER you tell the admitting nurse what medicines you are allergic to.  I told her I was allergic to Lortab.  Then I told my nurse...and the doctor...and the Xray technician - everyone I came in contact asked and I told everyone the same thing.  Once again the bracelet comes into play.  They put a bright orange label on my bracelet that says "ALLERGY."  What do you think happened?  When it was time to leave the nurse starts to hand me a prescription for pain meds and a sample of them to take right away when I get home.  I happen to ask "What kind of medicine is that?"  What do you think she says? You got it - Lortab.  I reminded her (again) that I am allergic to Lortab.  "Oh, yeah, that was on your chart, wasn't it?"  What is the point of having a chart and having an ID bracelet that screams "ALLERGY" if no one is going to check it??!!  So for the second time that night, they made a mistake and it could have been very bad if I had not checked the pills and just taken them.

For us the moral of that story is to be your own advocate in the ER and in the hospital.  Ask lots of questions and if you are not going to be awake or coherent enough to ask, make sure there is a family member there to advocate for you.  We will not be going back to that ER if we can help it.  There are 2 other hospitals around and we will definitely pick one of those.

I'll end with a good story of being your own advocate.  When I went in for my surgery (at a different hospital than the ER), I was very worried about the anesthesia.  I have a habit of vomiting after having anesthesia and really wanted to avoid that.  We had a wonderful anesthesiologist who sat down with us and really listened to my concerns.  He wanted me to take a pill by mouth to calm my stomach but was worried about me keeping it down (I had not been keeping anything down that day).  I made a suggestion.  He thought it was a good idea, tweaked it a little and we went with it.  I felt like he really listened to my concerns and my suggestions.  And it all worked out well (no upset stomach after surgery!!).  So in that case, I advocated for myself, not to fix a mistake, but to proactively solve a problem.

What about you?  Have you had to advocate for yourself in the health care system? Do you have any advice that I haven't mentioned?


  1. Excellent article, Cathy! I am so glad you are on your way to recovery! :) - Teronya

  2. Finally getting caught up on all the people that are following me! THank you for follow me too! :) I have a menu one too if you would like to follow!


  3. Cathy! Sorry to hear that you were sick and in the hospital! I learned first hand with Michael 2 years ago that you have to be your own advocate or have someone advocating for you. I think if I hadn't been there, well I don't know what would have happened. The first night the heart alarm went off ALL night seriously ALL night because he has such a slow heart rate. They say because he is in great cardio condition and so it beats more effectively but it was like 29-35 beats a minute when he was sleeping and so the alarm went off all night and no one would come. I was like uh hello? Is his heart going to stop? I also kept telling the first hospital he didn't just have a spontaneous pneumothorax because he had been sick. So it wasn't just spontaneous something else is wrong. I kept telling them for days and days and finally they transferred him to another hospital where I finally felt like they believed us. Immediately within the first several minutes of arriving he was placed on a broad antibiotic and antifungal(Valley Fever is common in AZ and it is fungal). He had so many Dr.'s it was crazy. I felt finally like someone was listening to us. When he was at the first hospital I felt like I couldn't ever leave him without one of our friends there because I was afraid he was going to die because he was so serious and he was so drugged up he couldn't even function most of the time. Great post!

  4. Right you are Cathy!
    I'm totally in support of this policy - take someone with you, have someone stay with you, and make sure that you totally understand what is going on...
    that's why i always go to fight for my mom - with all the oncologists, pallative care, nursing, lab people, etc... like you say, they don't even READ the charts. you fill out info on 5 sheets of paper, no one looks at it, WHY DO IT? and then they don't follow it.

    i've been on a special medical diet my whole entire life, and my records indicate that, and they bring me "normal" food?!

    and at my last hospital visit, my doctors wrote on my clipboard that i was "ornery" after i had finally had enough of their bad phlebotomist people and refused to let them take blood.
    can you imagine? me ornery? ha!

    great post :)

  5. Cathy, I am so sorry it has taken me so long to come by. I have only just caught up on your news and can't believe you have been though all of this! I sure hope your recovery is swift and that you are looking after yourself. Take care!

    Best wishes always,