Navigating tricky terrain

First and foremost we’d like to cautiously share some preliminary, but positive news.
Our current kidney donor, who has asked to remain anonymous, and who has been testing since February, has finished his tests (a medical questionnaire, lab tests he could do from home, and finally a flight to and visit with the Chicago clinical research team). Today Northwestern’s transplant committee met and found him to be a good match for Al, but only on the condition that he passes several more health tests. The tests may take several more weeks; in the meanwhile we are incredibly happy we have arrived even at this point; and remain guardedly optimistic.

We are tremendously grateful to our donor, not only for his remarkable generosity, but for all the time, paperwork, and effort he has already put into learning whether he can be a match or not. His family too, has supported him, and therefore us. We are very lucky to have them all on our side!

We are equally grateful to the few other donor volunteers who remain to be tested should we need them.

Recently, Al and I traveled to the desert. We watched wind storms come in and travel down the canyons and weather patterns play out on the arid stage. I marveled how the dynamics are similar yet distinct from the winds and currents in the San Francisco Bay. Anyone who spends time around the water can grasp a few guiding principles of the movement of water and air, but it can take a lifetime to perfect reading the right clues to navigate the tricky terrain. Science, clues from the environment itself, gut feelings or intuition, and finally the sage advice of those who have learned the terrain before, (and sometimes dumb luck): these all help make for a safer journey for the new initiate.

Terrain can come in many forms: ocean, bay, desert, rainforest… And how about the lonely, dark, treacherous forests of phone trees in the medical arena? Yes, I have done my time there shivering, frustrated, sometimes plain bored as my cell minutes ticked past. I have seen wind patterns change in those branches as Obamacare blew in. I had to address questions like: can Al get covered out of state? What will our coverage look like one year from now?

Thank goodness I identified several guiding and helping hands. We got tremendous support from our home nephrologist office (Chabot Nephrology Medical Group) and from the Chicago NMH (Northwestern Memorial Hospital) office. Bay Area Association of Kidney Patients (BAAKP) once again came through with a great insurance broker recommendation.

Of course none of it is a done deal, but we have more hope for a positive resolution than when we started.

The ecosystem and terrain of the clinical trial itself has shifted a bit as well. This week we learned that the Kentucky campus where the stem cells are processed, is closing for renovation from June through November. This means that the earliest Al can get a kidney+bone-marrow transplant in Chicago will be January 2015.

We certainly did not anticipate such a long wait; but our hopes are that he will pull through. With other parts of this equation beginning to fall into place, we are only left with the choice to persevere.