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  • Writer's pictureBurt Rosen

Self-Advocating: no catchy title, it's just so important!


This is an important one. First, let me tell you the story that prompted this post.


(Quick note, I really like my oncologist and don't blame him for the below. I also don't like to complain but since I blog for therapeutic reasons I wanted to get this off of my chest.)


Two things happened that set me off. First, I hadn't had blood work in over three months. I asked my doctor's office if I should get a blood test before my next appointment and they said no. Now, don't forget (which I am sure you have because this is my problem, not yours) I was anemic. I had low red blood cells, low hemoglobin, low platelets, low iron, etc. So a blood test is the only way to find out if I am making progress.


Then, while having an IV for my next scan, the nurse told me I would be getting a blood test for Creatinine to determine how my kidney was functioning. I asked her if I could get a CBC, CMP and an Iron panel as well. She said there was no order so she had to call my oncologist's office. The oncology nurse said no. Strike two.


That day, I got my injection as well (every 28 days). I had really bad fatigue for almost two weeks after. I couldn't diagnose fatigue from a scan but you can from blood.


Finally, and because of the fatigue, and since I am one of my own best advocates, I decided to push. This time, I called the doctor's office and gave them three options.


  1. They order the 3 tests I know I need

  2. They call me to explain why they aren't going to order them

  3. They set up an appointment for me with my Dr.


I knew they would never go for options 2 or 3 so within 8 hours I got a voicemail letting me know the tests had been ordered. Victory? Not sure. It was a pain in the ass to get a test I knew I needed.


Ok, so I get the test and have three numbers that are slightly concerning. My glucose spiked (but that is likely due to the monthly injection), my platelets dropped 25% (DOH!) and my iron is consistent, but consistently low (below normal).


So, I email my doctor about chatting. First, the nurse responds and asks me to send her my questions so she can ask the Dr and get back to me. I said NO. I told them I see him once every three months, I am knowledgeable, and, as patients go, I am not high maintenance.


I think she detected my annoyance so they called me with an appointment 3 weeks later. 3 WEEKS! I am not dealing with the most empathetic group of office nurses. I didn't even get a "We will add you to the cancelation list" or "I know you are concerned let me see if he can talk sooner". Nothing. Just an appointment 3 weeks later.


Of course, since I am learning to advocate for myself, I didn't quit. I sent the PA a note asking him the same questions. Guess who answered? The unhelpful nurses. Now, I LOVE nurses, but there seems to be a big difference in caring between clinical and office nurses. Of course, the nurse responds that she spoke to the doctor (preempting the PA), and here is what the doctor said (which wasn't helpful really). Of course, I have more questions but at this point, I am only a week away from my appointment. So I will wait. But my doctor will definitely hear about how I was treated (as will others at OHSU).


So why am I writing about this? For one this blog is therapeutic for me so writing all of this out and complaining a bit helps to get it off of my chest.


Second, it just illustrates how, at the end of the day, you have to fight for what you want. Whether it's asking for a test, a treatment, or saying no to things you don't want, it's on you. It makes sense that it is, but getting the reminders isn't always fun.


The system is there to help you. They are your guides, not your gods. That's a very important distinction. You are a partner in your care and more responsible for it than they are. If you can, learn as much as possible and always ask questions so you understand what is happening. If you don't like what you are hearing, push more.


Empathy is critical in life and even more so in healthcare. Being understanding of what someone is feeling is so important. Any kind of empathy, even an "I understand why you are concerned so let me see what I can do" would have made me feel so much better. But, it didn't happen.


Watch this video. It should be required for anyone who works in healthcare.



Just remember. You are your advocate. If you want something, go and get it and don't stop until you do.


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Anne Etra
Anne Etra
Apr 24

Empathy, yes. Walk a mile in someone else's shoes. Listen more, and consider your tone.

What a beautiful video!

And please, give 'em heck at your next doctor's visit.

Great post.

x

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Burt Rosen
Burt Rosen
Apr 24
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They will get feedback for sure!

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