September 14, 2010

Today Josh and I went for his pre-op appointments at the hospital.  We met with the surgeon, Dr. David Sutherland, for about an hour and a half.  There were lots of consents for Josh to sign, and many forms to fill out.  Everyone who has this surgery is enrolled in University of Minnesota studies, and they want to know your quality of life before the surgery, and they will ask these questions again at 3, 6, 9, 12 months and annually thereafter.  They will also do blood work at these intervals.

There was a doctor from Korea with Dr. Sutherland.  He is studying this surgery and will observe Josh's surgery.

We also met with another doctor who is a Transplant Fellow (Dr. Stone).  He will also be at the surgery.  (There will be a lot of doctors, residents, fellows, and observers at the surgery it seems.)  Interestingly, he is interviewing for a position at Weill-Cornell (NY Presbyterian) on Friday.  That is where my dear mom (who I miss terribly) was treated for her lung cancer.  It is a small world.

Dr. Stone was reviewing some of Josh's scans and showed us the latest CT scan of his pancreas.  This scan was done in May I believe.  Josh and my untrained eyes saw the spots all over that pancreas without anyone pointing it out to us.  It looked like polka dots.  (Those spots are the calcifications which are the hallmark of chronic pancreatitis.  You're not supposed to have any spots.)  Dr.  Stone showed us that Josh's pancreas is very small, much smaller than it had been.  He feels it will come out easily.   No wonder the radiologist here said Josh's condition was "severe".

Josh and I have made contact with another chronic pancreatitis sufferer, Trisha.  She is from New Haven.  She and her mother are planning to come out here for an evaluation and have already made their initial contact with Louise.  She and Josh have been texting and chatting, and I think they will be a nice support for one another back home.

Trish has been to many doctors at Yale-New Haven and Milford Hospital, and not one has told her about this surgery.  What is that all about??  Here kid, take your pain pills and live in agony.  Sorry but you'll have no quality of life.  I don't understand this at all.  She found out about the possibility of this surgery when her mom read an article in the September Reader's Digest.  Janie told me about this article too, but I haven't been able to find Reader's Digest here.  Anyhow, the article is about a soldier whose pancreas was badly injured in Afghanistan.  They shipped him to Walter Reed, where his pancreas was removed.  They sent his pancreas to Miami where the islets were extracted and sent back to Walter Reed and infused into the soldier.  He is doing great and is not on any insulin.  If anyone has the article, could you please scan it and email it to me?  (I found newspaper articles about it on the internet but can't locate the actual article.)

Day of surgery: about 4 hours for the removal of the pancreas; they expect to be finished with the islet cells by around 5PM.

I will post any news.

xxoo
Deb