I am a privileged and lucky human being.
Eight days ago, I was diagnosed with Uterine Cancer, stage 1. Most would not consider getting cancer lucky, but it could be a higher stage, a more aggressive form, and in a worse place like a lung or pancreas. I own this cancer and if all goes as expected, having a robotic assisted hysterectomy and enduring a brief recovery will be the end of the treatment for it. Yes, I am lucky.
Other ways that I am lucky are that I have a dedicated supportive husband who will stay by me through the entire ordeal, unless I am too bitchy and drive him away. I will try my best to be nice. I also have 2 supportive sons, other great family and friends and a warm lovable lap dog who will keep me company (and my lap warm) while I recover. I have a comfortable home and very good health insurance…..yes, I am lucky.
I worked as an RN most of my adult life. After my father died of Hospital Acquired MRSA pneumonia 2 years ago, I became a volunteer patient safety activist. I have talked with so many people who have had devastating injuries or who have lost loved ones because of harm caused by Hospital care. I have also talked with many who have had exemplary, almost miraculous experiences when being cared for in Hospitals. Obviously, I am shopping for the exemplary Hospital experience. Again, I am very lucky to have a bit of time to make choices and keep myself safe! My surgery is necessary and somewhat urgent, but not an emergency and that is an advantage.
How do I manage to get the exemplary experience….how do I get to be one of the lucky ones in this? Is it luck or planning? I believe it is planning and empowerment.
This is where my Patient Safety colleagues come in. I have worked with and learned from the most experienced, bright and empowered patient safety activists and advocates in the country. In the Consumers Union Safe Patient Project, we have doctors, lawyers, nurses, a construction contractor, medical policy analysts, an actress, data analyst, a professional fund raiser, editors, writers, psychologist, an airline attendant and others. All are either victims, or survivors of victims of medical error or hospital acquired infections. They have all learned from their horrifying healthcare harm experiences, and they share their experiences and knowledge with ALL consumers, each other and ME! Each and every one of them has taught me important parts of being an empowered and therefore safer patient. I do not stand alone in this endeavor…I am backed by the most impressive Patient Safety activists in the US!
Some of the gems of knowledge I have gathered from my colleagues and used so far are…
- I have the infection rates for my surgery in 2 of the 3 hospitals I am considering
- I have read the reviews and “grades” of all the doctors and the Hospitals I have considered
- I have networked with others who have had this surgery.
- I have learned everything I can about the surgery, the options, the possible complications, the alternatives (not too many with cancer), the risks, the recovery, and what to expect post operatively ( before even seeing the specialist)
- I will started my journal, which I will continue while hospitalized
- I will make an appointment to complete a living will and a durable POA with our attorney
- I will study my consent form and add or take out the parts I am uncomfortable with
- I may bring signs or have a tee shirt made identifying myself as a person who demands handwashing “Wash first or don’t touch me!”
- I will ask for MRSA and VRE screening pre operatively, and I will use Chlorhexidine antiseptic showers for 3 days pre op.
- I already know exactly who will perform my surgery (no first timers will practice on my old body)
- I have my list of questions prepared for the day of my surgical consult.
I am still doing my homework and will be able to add to this list soon…
I just came back from the 2012 Consumers Union Safe Pateint project Summit. I just spent almost 3 days with the most passionate patient safety activists in the country. I shared my new diagnosis with several of the CU group, not for sympathy, but to gain expert advice and moral support. During our general meetings/presentations, we discussed at length EXACTLY what I am challenged with now as a healthcare consumer/patient. The suggestions from these experts have become my bible…for my own safety. I have worked alongside them for over 2 years, to benefit others and to empower everyone to have an exemplary healthcare experience. They are candid, experienced and they care. They all give their time, hearts and souls to this work. These are the people who have given me the best advice any patient could possibly seek for their safest healthcare experience.
These are my trusted friends and Patient Safety colleagues….
I am truly lucky.