We are all skilled in the art of running operations and managing life. Whether it is running a multinational, a startup, a household, we instinctively know what to do next and where to find resources.
Very few of us plan for emergencies especially when it comes to our own health. Though insurance, copays, second opinions are foremost on our minds we fail to plan for the realities of long term care e.g. who will take us to the hospital everyday, who will attend to our medical needs, and, who will take care and manage us during the recovery period?
Four years ago I was diagnosed with Myelodysplastic Syndrome (MDS) / Acute Myeloid Leukemia (AML), a form of leukemia which has recently garnered public attention because of Craig Sager, Kassie DePaiva, Chuck Pagano, and Robin Roberts.
Though the healthcare system was wonderful during the evaluation, diagnosis and treatment portion of the program, I was totally unprepared for what was to come next during recovery and rehabilitation over the next 135 days.
Healthcare institutions are built to provide treatment and follow up within hospitals. The reality is that the healthcare landscape is changing rapidly with a big push for outpatient treatments and recovery periods. Critical care patients like me are falling into a gap with little guidance, no support and having to manage our own recoveries by ourselves.
I have to admit, it was easier for me to run companies than the challenges I have faced over the past four years. Treatments for MDS / AML are rough with low survival rates, but managing complications, changing medical regimens, severe life style restrictions were even worse.
After interviewing several patients, caregivers, and physicians, it was apparent that the problem is widespread and needs attention quickly. We started NeuVisium Foundation (NVF) to help patients bridge the gap between critical care treatments in hospitals and patient recovery at home. Our goals are to:
- Reach patients and caregivers who are transitioning from hospital to outpatient settings
- Teach patients and caregivers how to navigate changing treatment protocols, home-care responsibilities, and shifting health-care burdens
- Ignite patients’ and caregivers’ ability to manage their conditions and heal themselves with innovative and practical tools
Like any non-profit NeuVisium Foundation can only sustain and grow with generous contributions from supporters like you. I am looking forward to continuing this dialog and encourage you to help us grow and succeed by donating to this much needed cause.