11.30 a.m…
After confronting Irene’s diagnosis and the journey she’s been on for the last 3+ months, we are trying to understand and reduce the number of identifiable and significant lessons we’re learning…
Here’s a very short list of four lessons we’re learning:
• Build the NETWORK ahead of time
o When crisis strikes it is too late work to build a network of people who can assist you. The people are either already there or they aren’t. It would have been impossible to navigate through the challenges in front of us without a number of AMAZING people that we know who were willing to help us. Each person represented a sub-network of relationships that was also very helpful.
o Quick example: It was only after leveraging those trusted relationships that allowed us to transfer to UCSF. The primary care team told us that UCSF wouldn’t accept Irene. Remember, this is before diagnosis. They were merely treating Nephrotic Syndrome symptoms. This same team advised us to treat Irene’s symptoms on an outpatient basis and return in three months. Of course we weren’t satisfied with that answer and pursued UCSF through our network…Irene was admitted to UCSF the next day. During the admission process, the UCSF medical team communicated to us that Irene’s needs were extremely complex and significant. Three days later she was diagnosed with Primary Amyloidosis.
o Ask yourself, “Who is my “go to” network if things go array?
• We must be our own HEALTHCARE ADVOCATE
o When current test results are radically different than historical, don’t wait for your primary care physician to take the lead but rather challenge the primary care advice that is given if it doesn’t make sense to you and get a second and/or third opinion. Don’t wait; time is not your ally.
o Make sure that the medical teams that you are working with are communicating with each other and they’re not operating in silos. As smart and gifted as physicians are, unless they are intentional about communicating and knowing that there is an accountability structure in place to follow-up on the care they are administrating, they will tend to operate
