The importance of being your own medical advocate

 I have quite the medical history. I call myself a medical mystery. I’ve had more than one doctor tell me that I’m a medical miracle since there’s no reason that I should still be alive. Yes, doctors have kept me alive but I now have a love/hate relationship with the medical profession.  Doctors are very fascinated by my body but never really know how to help me.

I have learned to keep records of my meds and health and not to rely on doctors to do this for me. It’s not that doctors don’t want to know everything about their patients, they simply don’t have the time. Also, I have found that most doctors and emergency rooms know nothing about feeding tubes. Unfortunately, my family and I went through a time when my feeding tube would burst weekly. We would go to the ER, and end up teaching the nurses and doctors about feeding tubes. We were at the ER so frequently that we would joke with the staff about how they needed a frequent flyer program for me! I now know what size of feeding tube that I need and keep an extra one in my home in case the one in my stomach must be replaced.

In 2018, a doctor convinced me to go forward with a surgery to basically build a new esophagus using a piece from my intestine. It was a major surgery that would require two surgeons and 8 hours in the operating room. The doctor told me that the surgery had a 94% success rate. Well, the surgery failed and I had to have an emergency surgery because the flap from my intestine became infected with Ecoli. Now, my esophagus is not even attached to my throat and the lead surgeon told me that was my one shot we can’t try again. The doctor who convinced me to have the surgery just disappeared. I never heard from him again which still angers me.

Recently, a urologist urged me to do a procedure so he could put a camera through my bladder and into my kidney to investigate a blockage that has baffled my doctors. I thought it would be a simple outpatient procedure. Well, the simple procedure gave me a week of unexpected pain. 

At first I was angry with the urologist but then I realized that I only should be angry with myself. I did not advocate for myself. In the appointment before the procedure, the doctor asked if I had questions but I just sat there silent. Now, I wish that I would have spoken up. Since, I can’t drive, I have to get pain scripts before the actual procedure. I need to prepare myself and know how the procedure could effect my body. I want to prepare for the worst case scenario.

I recently read a great book by Atul Gawande, Being Mortal. Atul, is a surgeon and the book talks about how doctors are so focused on fixing that they often overlook what the patient actually wants. For example, a condition could be fixed with amputation but what about the patients quality of life? Atul argues that doctors should focus on giving patients the best quality of life instead of just fixing the problem. The less is more approach. This is most important for elderly patients sometimes knowing when to stop so the patient can live out there life in peace. Maybe they can’t be cured but how can we make them comfortable and leave them with an improved quality of life?

Just how chemotherapy killed my cancer but did all sorts of damage to my body. It is so important to be your own medical advocate. Know what you are going to put your body through. Know what you are allergic to and what medications you are taking. Don’t rely on doctors to do this for you. After all, you are the expert when it comes to your body.