Heart Failure to Transplant: Social Worker Appointment—Logistics

I posted the following to my CaringBridge journal, describing events from Nov 25, 2014:

We left Tulare on Monday at 7:00 or so.  There was an accident blocking 152 and traffic came to a dead stop near Santa Nella so we rerouted up to the 5 and took 580 into Santa Clara.  My first appointment was at 11, but we arrived at Kaiser Santa Clara at 11:30.  We had called ahead to let them know of the delay and they worked with us to juggle the appointments. 

First we met with Janet the social worker.  She went through the detailed logistics involved in the transplant process and asked us questions about our options and plans. 

Background Info:
There are 250 transplant centers in the US grouped into different Organ Procurement Organization (OPO) regions.  When organs become available they are first offered to centers within the original OPO region.  Each transplant center maintains their own list of patients eligible for transplant.  It is possible to be listed at more than one center, but there is no benefit to be listed at multiple centers within the same OPO region.  Most of the patients who work with Kaiser in Northern California get on Stanford's list.  But some of their patients can be put on the list at Cedars-Sinai, which is in a different OPO region, instead of or in addition to Stanford to either increase chances of finding a matching organ or ease the burden of care on the patient's family/support network.  I'm not sure if the decision is completely up to me, but we let them know we preferred Cedars-Sinai because of my family support in Southern California. 

Here is some compare and contrast of what is involved in pre and post transplant logistics at each location:

Getting On the List:
STANFORD: Present my case to transplant team next Friday, they will decide that afternoon whether or not they will accept me as a Priority 2 transplant candidate. 

CEDARS-SINAI: Present my case to transplant team via email/fax/mail at some point in the next few weeks, but they wouldn't make a decision about whether to accept me on to their list until I can be examined in person.

Pre-Transplant Travel Restrictions:
STANFORD: I have to stay within 4 hours of Stanford at all times once accepted onto the waiting list, and report to Kaiser Santa Clara for monthly clinic visits and lab work.  This means I won't be able to visit my family in Southern California until after the transplant.

CEDARS-SINAI: I have to stay within 4 hours of Cedars-Sinai at all times once accepted onto the waiting list, and report to them for monthly clinic visits and lab work. Not sure what this means in terms of being able to drive to Selma or Fresno for other activities or appointments...

Post-Transplant Travel Restrictions:
STANFORD: Once transplanted, I would stay in the hospital for 10 days to 3 weeks, and need to stay within 20 minutes of Kaiser Santa Clara for daily/near-daily follow up care the first 30 days after release.  Kaiser would reimburse me for lodging up to $100/night. 

CEDARS-SINAI: Once transplanted, I would stay in the hospital for 10 days to 3 weeks, and need to stay within 20 minutes of Cedars-Sinai for daily/near-daily follow up care the first 30 days after release, and in the area for a total of three months.  Kaiser would pay in advance for lodging up to $100/night, and in addition provide a per-diem stipend.

Post-Transplant Care:
At either center, I would need a primary companion to provide care/supervision 24 hours a day during the first 30 days after release from the hospital, with a secondary person available for respite care.  We also need to arrange care for Charlotte, Zachary and Elliott.  I have a large extended family in Southern California that could step into these roles more easily if we are down there near Cedars-Sinai, which could also potentially minimize the separation for the kids by allowing for more frequent visits.  By contrast, I know very few people in the Bay Area, and Adam's extended family is all here in the Central Valley.