Our Riding Companion Thal

The most difficult and time consuming part of this trip is going to be accommodating Thal!  Thal has been with me my whole life. Although Thal is usually quiet and at times I forget he is even around, Thal can be a real disruptive pain! Since Thal will be along for the ride Liz and I have decided to do our best to accommodate.

Thal is my sidekick Thalassemia.  I need to receive someone's blood every two weeks to keep me going.  At home in CNY not much more than an inconvenience but out on the road, well I've never received treatment away from home.  This will be a challenge.   Liz is very determined to make this work.  She has given me the inspiration to work with people out of my comfort zone.

We've confirmed insurance coverage and now am in the process of looking for hematology doctors and clinics in the Phoenix and St. Louis areas.  My own Hematologists Dr DeTraglia has graciously offered to help me find and set up locations to receive blood transfusions in both the Phoenix area and St. Louis.  I've also have been working with Eileen at the Cooley's Anemia Foundation who has come up with a couple facilities and doctors..

I am fortunate to have family in St. Louis and Phoenix.  Has made it a little less concerning (for some reason in my mind) having family from the areas. My Niece works at a University in St. Louis.  She has reached out to a colleague Dr. of Hematology who is willing to talk to me and my Dr. and give any assistance needed.

I am also a little concerned about fatigue setting in later in the trip close to the time when blood is needed.  I feel like superman for about 5-7 days following receiving blood but then slowly more like a vampire craving for my blood fix and it's rejuvenating factors! I'm hoping I can keep in shape and take in enough nutrition to be able to push through without feeling to crappy.