One of the lessons I have learned over the past six years is the importance of having a good healthcare advocate.
Lost Without My Advocates
Having a good advocate is always important. Someone with a strong voice who cares for you and is willing to speak on your behalf. Those of you who know me well understand I am no wilting daisy. I have the ability to express my concerns and advocate for what I believe is right in any given situation. While that is true, I would have been lost without Nancy serving as my advocate for the past six years.
Stressful situations, like any healthcare emergency, can mean we are not functioning at our best. While we may be present for entire conversations, there is a good chance we will miss important information. There have been times when I was too weak, physically, emotionally, and spiritually to question or protest decisions that did not feel right. I needed my advocate to speak on my behalf in moments like that.
A Familiar Story
I will share what may seem like a dramatic story to illustrate the importance of advocating for yourself and others. But, the truth is that stories like mine play out across doctors’ offices and hospitals every day. I am reminded of the importance of advocacy each time I have an ERCP.
This past week I underwent an ERCP to clean out my bile ducts. This procedure is necessary because one of my prior cancer treatments severely damaged my liver. As a result, I now have three metal stents in my bile ducts, allowing the bile (waste) to drain from my liver. Once these ducts get backed up, I start heading towards liver failure. The ERCP cleans out the ducts and allows my liver to function closer to normal. Imagine a partially clogged sink drain that starts to work efficiently once cleaned out.
The day after my latest ERCP, the GI office called to schedule my next ERCP. They have become routine. Every three months, I go in for a cleanout.
The History Behind My New Routine
What is essential to understand is that this was not always the case. When my liver first started having these issues, I was told there was nothing that could be done to correct the problem. One doctor stood in my hospital room, apologized for not having any answers, and told me I would be discharged. My liver would continue to shut down, and I would die.
As you can imagine, Nancy and I began advocating very strongly that this did not sound like a wise option. It took a few days for the GI team to come up with the plan to try an ERCP. My first ERCP did not work. After more advocacy and many conversations, they agreed to try again. The second one worked, and my bile ducts started to flow closer to normal.
Over the coming months, I needed to have the procedure repeated. With each ERCP, the ER and hospital doctors would tell me that it was impossible to have multiple ERCPs. One doctor told me, “We will do this ERCP, but it is the last one you will ever have.”
“Familiar With My Insides”
After many more questions, conversations, and advocating for a different solution, I finally connected with the right GI doctors. They understand my issue and have a long-term view on managing my cholangitis. Dr. Galen Leung is the GI doctor who has been performing my ERCPs. After this latest procedure, he casually said, “we will do this again in three months, and we can do it earlier if you need it.” This is just another part of what my “new normal” will look like in his eyes. As we parted ways on Thursday, he smiled and said, “I am very familiar with your insides.” I found that strangely comforting.
I share this story to help you understand the importance of advocating for yourself and those you love. If we had listened to the first few doctors, I would not be receiving these ERCPs and would most likely have died from liver failure. I needed people to speak for me when I was too weak to fight on my behalf. My advocates (Nancy and a couple of compassionate doctors) spoke mightily into a complicated situation. Without these advocates, I would not be receiving the treatment I am today.
Advocacy Questions:
- Who are the people who have advocated on your behalf? Have you thanked them for their support?
- Who is the person (people) who can serve as your advocate in difficult situations?
- Is there someone in your life who needs an advocate? Can you speak on their behalf? If not, can you help them find an advocate?
- When someone comes alongside to advocate for you, how does it make you feel? Do you welcome their help or struggle with wanting to do everything yourself?
- When interacting with doctors, can you balance respecting their expertise and advocating for optimal outcomes? This is not always easy, especially when we are the patient, which is why it is crucial to have trusted advocates alongside us.
