August 31, 2010

Josh with Dr. Sutherland

Today was a big day.  We finally sat down with Dr. Sutherland, pioneer of the auto islet transplant and Josh's surgeon.

We have good news.  The C-Peptide test which Josh took yesterday had good results.  In fact, the results were much better than the doctor expected given the number of attacks Josh has had.  This test indicates to the doctor what Josh's glucose tolerance is and what type of islet yield they expect to get.  As you know, that is the main thing we are here for, is to get the islet cells out of the pancreas and minimize Josh's need for insulin after the surgery.  Dr. Sutherland said he expects to get an excellent islet yield based on the test.  Fabulous!!

When Dr. Sutherland came into the room he told Josh he wanted to hear his story.  He said everyone with chronic pancreatitis (CP) has a story which he needs to hear.  So Josh chronicled the past 2 years, 5 months of pain, hospitalizations, and tests.  Dr. S also wanted to hear how CP has impacted Josh's life, which has been substantial.

Following that interview, he asked Josh to show him where the pain starts and where it travels, and then he gave us some details about the actual surgery.  He told us it takes about 4 hours to remove the pancreas (pancreatectomy) and about 4 more hours to do everything with the islet cells.  Most patients go to ICU, although because Josh is young he thinks there is a chance he will not.  After ICU there is an intermediate unit (nurse to patient ratio either 1:1 or 2:1) which Josh will go to.  After a few days there Josh will be on the regular transplant floor.  He said to expect 10 - 14 days in the hospital, and after Josh is out of the hospital about a week more in Minneapolis.

I reminded him that we are here and would be ready to take any earlier cancellation!  He said you never know, there could be one.

Then Dr. S noticed Josh's shirt which says "For Sale - One Angry Pancreas".  He started laughing and took out his iPhone to take several pictures of it.  At that point I felt comfortable enough to ask him to pose with Josh, which he was very happy to do (photo at the top of this entry).  When Josh emerged from the appointment, many nurses etc. commented on the shirt and everyone got a good laugh about it.

While we were waiting to see Dr. S, a woman sitting near us commented on Josh's shirt.  We started talking and it turned out her husband has already had this surgery.  We spent a lot of time talking to this lovely couple from Oklahoma.  Before yesterday, we had never met anyone with CP, and now we've met two.  We later met a third, a woman in the cafeteria who commented on Josh's shirt and said she also has CP.  This place is teeming with CP patients!!

When we were talking to Terry and Karen from Oklahoma, Louise, the Transplant Coordinator, came out and saw us talking.  Yesterday she found us talking to Bernadette and John.  She thought this was really funny, and asked Josh, "what are you, a magnet?"

We feel terrible for Bernadette, who we met yesterday.  She started having an attack last night and she was in a lot of pain today.  However, she did get a surgery date, about 2+ weeks after Josh, and we were so pleased for her.  What a HORRIBLE condition this is.

We're settling in to life in Minnesota.  We got tickets to a Twins game next week.  Josh has a Twins cap so he's happy.  The big box of stuff we sent from home arrived today.  So, while we are awfully far away and miss everyone terribly (but especially Gregg and Emily), we are doing what we have to do.  We are starting to see that there will be light at the end of this tunnel.

xxoo
Deb