UPMC - First Few Days

Tuesday, August 23, 2011

Yesterday, I met with the UPMC team.  And I do mean a team of people. But that was after I gave blood like I never gave before.  My arm stopped giving, my Hickman line stopped giving, and they had to go to a prick on my other arm.  It must have been over a liter of blood.....seriously.

So far the team includes some key people.  There is the Transplant Coordinator - Mary.  I really like her.  Down to earth, can translate medical jargon and a caring person.  There is another coordinator Cindy, the blood takers - Aileen and her friend (I missed her name), Laurie - the Nutrition Physician, and the head of the team - Dr. Kareem, the transplant surgeon. 

After an x-ray, Amy (my wife) and I met with Dr. Kareem and gave him my history.  The big surgeries.....1998, 2001, 2003, 2/2008, 8/2008, 11/2008 and 12/2009.  The problems with strictures and fistulas.  Just an overall picture.  He also wanted to know about us, what we did, if we have children (yes) and why we ventured from Holland, Michigan to Pittsburgh to see him. 

So why did we come to Pittsburgh - that will be another post, but it's because UPMC is the leader in small bowel transplants.

After reviewing the information we shared, Dr. Kareem looked at my eyes and said 'You need to be transplanted because your small bowel is too fragile.  A regular surgery will lead to more of the same - fistulas.  But before we can do that, you need to have a 'clean out' surgery to remove your existing small bowel and clean out any infections.  This will lead to a more likely success than if we were to transplant now.'

Wow....two surgeries rather than one.  A million questions run through your mind when you hear that.  Like when will the first surgery be? How long will I need to recover before I can be 'transplanted'?  How will this impact my family?  How will we pay for the expenses of being at UPMC for longer than expected?  The kids start school in two weeks and Amy starts work then - what will we do?  Work - will I be back for a while before this starts?  It will probably take a while to answer these questions but it is overwhelming to hear that.

And then, we got a call from Mary.  She shared that Dr. Kareem reviewed my CT scan from today and wants to do the clean out surgery next week on Tuesday (8/30/11) since I've developed several more fistulas.  We've known all along that my case was complicated, but this really just confirms it.

Tomorrow we meet with the finance team member, the social worker and the pyschiatrist.  We are most interested in speaking to finance and social work.  We have all kinds of questions regarding insurance coverage and living arrangements.  Hopefully we'll get some answers tomorrow.