Tuesday, November 6, 2012

From Chaos to a Semi-Plan


The Plan:
Cancel the "second opinion" appointment with UCSF
Have Tom admitted to Sutter General for 9:30am
Have Oliver typed to see if he's a match
Go on about the day.

What Actually Happened:
Cancelled that "second opinion" appointment.
Arrived with all of our things ready for a few weeks in the hospital
Called to tell the lady that Oliver was present for the typing
Were told that the insurance wasn't covering anything to do with the transplant at said facility.

From There:
Spent a good while calling the insurance to figure out what was going on.
When the lady told me that Sutter wasn't coming up as a covered facility, immediately I called UCSF back in desperation and begged for our appointment back.  In the meantime, we were called in to see Dr. Carroll (transplant specialist for Sutter General), so poor David had to be thrown onto the phone with the lady from UCSF.
We arranged with Dr. Carroll, after explaining the situation, that we would begin Monday.  We didn't want to begin a chemotherapy that would possibly make it to where we couldn't go to UCSF down the road if Sutter couldn't attain authorization from our insurance. He agreed, but UCSF couldn't get us in until Monday, because now it was no longer a "second opinion" but an actual consultation for possible care at the facility.

Yesterday (Monday), we went to UCSF, met with Dr. Damon... who we both seemed to really like.  He specializes in leukemia and lymphoma (like the Dr. here), has had a hand in some leading research and is on the board that decides which regimens are suitable for leukemia treatments. That said, he seemed to be the man to speak to.  He looked at what we'd been doing, as well as what we have planned to do with Sutter General, he said it gets his seal of approval. That said, he told us due to the facilities at UCSF not having any beds to offer, and Sutter General being a place that does transplants so they'd be familiar with the planned chemo regimen, to go ahead with the chemo at Sutter and then:

a. if we so choose, based on the experience that we research Dr. Carroll having, go ahead with the marrow transplant at Sutter General. As they have attained authorization for care, it was just a large misunderstanding and the authorization came through an hour after we'd left.
b. if this chemo regimen does not put him into full remission, consider it two strikes and come to UCSF and try the MOAD regimen and then from there continue on for a transplant.
c. if after our experience and research into Dr. Carroll's expertise we just decide that even if in full remission after this chemo we'd like to do the transplant at UCSF, go do the transplant at UCSF.

Our Plan
Is to have Tom do this chemo here at Sutter.  No matter where we do the transplant, we will have to move closer to the facility, so given off our experience thus far in consultations... our gut reaction to plan is that we do the chemo here (as suggested by UCSF) and then move to San Francisco for the transplant or further chemo (if that is needed, but lets hope not).
During the time of this chemo, we will be having Tom's brothers both typed to see if they are a match, this process can take a few weeks.  If not, they will find a match via a registry.

So there it is folks.  In the meantime, I will be driving to visit him at Sutter General in Sacramento (about a half hour if no traffic), and hopefully packing up a bit for whatever move we end up making.

No comments:

Post a Comment