November 2, 2011

 
November 02, 2011
 
This might be my last update for a while.  We had an appointment with the Transplant Center yesterday.  Our initial thinking was that because their team has not been able to come up with anything definitive, that they might be helpful in getting us an appointment with the Mayo Clinic.  As you know we have been negotiating with our insurance company to let us go out of the network and go to the Mayo Clinic.
 
Our doctor from yesterday talked to our customer advocate and felt like they had come up with a possible explanation for my symptoms.  He called it “Veno Occlusive Disease”.  The cause may be a side effect from one of the medications that I have been on since my first transplant. (Almost 19 Years Ago) What happens is essentially the closing off of the smallest vein systems in the liver. Both of my most recent biopsy’s showed some clogging within the liver but nothing big enough to show on an x-ray or MRI.
 
As a result of this conclusion the insurance company feels like we should stay here in Utah.  We told them that we wanted to get a second opinion, and they are making arrangements for us to see a Transplant Doctor at the University of Utah.  We know this doctor because he was one of my doctors for my first transplant.  They will get my records to him and he will evaluate the tests and procedures and make suggestions as to treatments.  We don’t really have any other choice.
 
The bottom line is, I have gone off the medicine in question, but it could take three to four months before we will see if there are any changes.  The problem in my mind is, if we wait three or four months and it is not this VOD, then we have wasted a whole bunch of time again.  Hopefully, I will start to see improvement before then.
 
Just because I won’t be writing much for a while, that does not mean I don’t want to hear from you.  One of the best parts of this whole thing is being in touch with family and old friends.  We still want to get together, maybe for some “Poop On Your Neighbor”.  Again thanks for all your positive thoughts and prayers on my behalf.
 
Mike