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 within their own frame of reference. No one knows the symptoms and all of the information better than you do and nobody cares as much as you. Continuity of care between medical teams is YOUR responsibility. We also cannot rely upon the information to be adequately transferred. There is a lot of information transmitted but there is also a lot of information that may or may not be transmitted.

o Quick Example: Irene’s cholesterol went from 200 in October to over 400 in February after she had her annual physical. In retrospect, we should have acted earlier. Rather than taking the primary care physician’s advice to simply go on cholesterol medication without a ‘recheck” and further evaluation, we may have discovered months earlier what Irene was dealing with if we had been more proactive. Unfortunately, by the time Irene had other symptoms i.e. 2 blood clots (one in the lung and the other in her thigh), edema and the loss of protein in her urine we were already deep into the crisis.

o Ask yourself, “Do I have the right medical team in place today?”

• Spiritually speaking, in this time of significant crisis, we didn’t have time to spend QUALITY TIME IN THE WORD.

o The time we had already invested in the Word and the scripture we had already memorized and know to be true is all that we had to rely upon, except, of course, for the indwelling and ever present Holy Spirit. There was simply too much going on with Irene’s complex case to spend quality/quantity time in the Word. Almost everything was done “on the fly”. There wasn’t time to plan, deeply think and/or reflect. It was “reflex time” and a time to rely upon Spirit lead instincts…

Quick Example: “word picture” illustrations:

o In a prior life as a police officer, I liken the situation to being on the SWAT Team. In a “fire-fight” I could only wish that I had spent more time at the shooting range practicing for the real thing…

o In a sporting event, at game time I could only wish that I had spent more time in training and preparation

o Ask yourself, the following two questions: Am I spiritually prepared if things really get challenging? Am I spending enough time in the Word and preparing myself for an unknown future?

• TRANSPARENCY as a STRENGTH, not a weakness

o I decided to build a website in order to communicate with family and friends.

– Quick Example: We took the risk of being VULNERABLE with the many challenges in front of us and live out the journey in a “glass bowl”. However, the assets that came out of that have overcome any potential liability. Living out this experience out through the VIRTUAL COMMUNITY of http://www.irenedias.com has been a wonderful blessing to us. The amount of love that is being “poured out to us” (and especially Irene) from people around the world is an emotional and spiritual BOUY that gives all of us the strength and encouragement to keep going!!!! We believe that the WELL WISHES read to Irene everyday have been KEY to her encouragement and promising healing and restoration. Thanks again!!!!!!!!!

o Ask yourself: Am I trying to control my circumstances and keep others at arm’s length or am I willing to be transparent and trust God even if people see my weaknesses?

As lifelong learners, we see these short examples as valuable lessons and hope that in some small way they are helpful to you along this journey we call LIFE.

Caminando con Fé

Dave