The First Couple Weeks

16 September 2012:  
 Seeing single fairly consistency. 




13 September 2012:  



12 September 2012: 
Took a crack at socializing in the evening after attending a meeting for work.  The meeting was touch due to vision issues but it felt good to participate in a good discussion. 



4 September 2012: 
Update From Lisa.

Good signs during physical therapy.  Walking really well and good balance, relatively speaking.  Vision is still double but learning to compensate for it.  Everyone is still saying that these issues will most likely decrease or completely go away.

Received the results from the MRI.  Doctors noted that I have a cavernous malformation, which is a small cluster of thin-walled blood vessels that have the tendency to hemorrhage. This is a birth defect and does tend to run in families.   There seems to be a lot of information on the Internet.  There is surgery that can be done that can reduce the likelihood of hemorrhaging.  This isn’t performed here so the neurologist is sending  records to Stanford University.  They typically don’t do surgery after the first hemorrhage of this kind.

ITP is the other complicating factor (low platelets).  Been treated for that last two years with no significant improvement they need to evaluate the entire situation.  So with that said I don’t really know the long term plan yet.  The short term plan is to get and keep platelets up.  They just started another treatment as an inpatient, a medication called Rituximab.  This will suppress the immune system and the hope is that it will allow  platelets to build long enough so that they can remove his spleen.  The spleen is the organ that destroys the platelets marked for destruction.  This only has a 50% success rate.

It seems the doctors can only deal with the symptoms because there is little understood about what is causing the immune system to destroy the good platelets.  I’m hoping this latest treatment will have a positive impact but it seems they are determined to remove the spleen regardless.

2 September 2012:  
ICU Day

Taken to get MRI of head.  First time for that.  I requested Pink Floyd music and got Bruce Springsteen instead.  Holding still with a rack over my face wasn't too bad after the music started.


1 September 2012:  
Emergency Room.

Felt odd at home and hung out in bed most of the day feeling dizzy, or as if I was clouded by drugs.  When the headache moved around in my head and numbness started to appear at the back of my right leg, it seemed time to call the doctor.  He urged me to get to the emergency room and so we went.

Emergency room was full.  I wrote on the triage sheet that I had bleeding in my brain and I got to the front of the line.  My doctor knew I needed platelets, but it did take awhile to get to that.  I had a CT Scan which verified the bleed in the brain and suggested that I had a vein problem in my brain that led to the bleeding.  Not much information flowed during this visit.

Eventually, I was moved to the ICU with Lisa.  Late that night I fell asleep and woke up after awhile to discover my right body was numb and  my vision was now double vision.  Their plan is to get me to a MRI the next morning.