From Administrator to Caregiver, Navigating through the world of healthcare.
Our journey navigating the world of healthcare changed with one word – cancer.
In the Health posts category of the blog I plan to share our story. It is about a scary healthcare diagnosis that has impacted our family greatly. Our goal with these Health posts is to tell you our story from our perspective.
This is not a one size fits all story. Everyone’s situation is unique. This is not providing you medical advice, you should always seek out medical professionals for that. I am not holding myself out as an expert so do not rely on anything I post (see my Disclaimers page).
This is a personal story that tells you about our experiences and observations. The perspective of a stay at home mom who has been the caregiver to the family for over 25 years and is now the one needing the caregiving. The perspective of a guy who has worked in the healthcare industry for close to 30 years and how this one diagnosis changed his perspective on just about everything he knew.
We were urgently introduced to the patient side of the healthcare process in February 2016. I have roughly 30 years of experience in the healthcare industry in various roles. I started in the clinical laboratory industry on the accounting side and moved over to the hospital industry on the administrator side of the business. One of the reasons I moved to the hospital industry was to get closer to the patient. Even with this change I never truly appreciated the perspective of the patient or caregiver’s of patients until my wife and I went through her experience.
For a couple years my wife had noticed changes in her body. When she visited with her primary care physician he suggested it was irritable bowel syndrome and recommended ways to manage it. Lately though, my wife had been complaining of increasing pain in her abdomen and bowel and we thought the irritable bowel syndrome was just getting more acute. The pain got to a point where we had made an appointment with a gastroenterologist to confirm what was going on.
We never made it. At 6 am on one morning in February 2016 she was in so much pain that I drove her to the emergency department.
The emergency room evaluation led to the diagnosis of a softball sized tumor that had perforated her colon. This led to immediate emergency surgery and a six day inpatient stay at the hospital. After discharge from the hospital we navigated the process to find an oncologist for chemotherapy. After six months of chemotherapy she received a diagnosis of NED (no evidence of disease). But then at a routine three month follow up we were told that the cancer had spread . This led to a major surgery to remove half of her liver and another six months of chemotherapy.
After going through this experience I realized that all 30 years of my healthcare work experience did not fully prepare me to be a caregiver.
It opened my eyes to the realities of the healthcare system in the United States from a patient and caregiver perspective. I had read books on the patient experience. I have been through countless hours of training about patient satisfaction. I have seen more acronyms than I can remember to remember the steps we should follow when talking with patients.
After going through this experience with my wife I suddenly had a realization a simple process had become complicated. The entire process around simply talking with and caring for patients and families should be easy. I wanted to share our experience with others in the hopes of shedding light on the stupidly complicated healthcare process from several points of view.
I will be breaking the health posts down into sections to focus on the different perspectives of patients and families & medical providers with insights into the process to help navigate the process. This is one person’s perspective and there is no right or wrong answer. This is not the “be all, end all” group of posts that will turn the healthcare industry on its head.
This is not an expose on the deep dark secrets of healthcare. I am not going to address the politics of healthcare – that would take up an entire book by itself. I am merely sharing some insights that people will hopefully be able to take something away to improve their own healthcare experience.
Here is my plan on posting to the Health category:
- I plan to make posts in plain language. When using more complex terms or insider terms I will help translate so you can talk the language of healthcare. The world of healthcare is full of complex medical terms that need to be explained in such a way that we understand them. There are also all sorts of terms relating to insurance that you need to be aware of.
- I plan to share our experiences so you can gain insight into the background of the situations we went through. I will also tell you about what we learned from these experiences to hopefully not repeat challenges we faced. At the end of a post I will summarize a call to action so you can have something to refer to easily
- I plan to share different perspectives on all this – primarily as a caregiver, secondarily as a former healthcare administrator with 30 years of experience. It is important for us to understand how to “work the system” – and I do not mean bribing or anything like that.
- I plan to provide you information so that you can work better with physician offices, other medical providers, your insurance company or the provider directly if you do not have insurance coverage.
We hope that these posts will help you, at least in some very small way.
What are some frustrations you have experienced in the healthcare world? Remember – keep it real general AND NO POLITICS!