Packing for the first FH Advocates for Awareness Training Conference meeting in Amelia Island, Florida.  That's right the very FIRST get together of twenty plus individuals diagnosed with FH, board members and staff.  In committing to this event I will be fulfilling "the mission of the FH Foundation-by becoming a catalyst of change for the FH community, raising awareness and saving lives."  Pretty tall order-but feel quite confident that I am ready to meet and great with others and begin my journey as an advocate.

Today was spent at a garden party with a lovely group of diverse women on this last day of Spring.  The hostess prepared a lovely brunch featuring her organic produce from the garden and fresh eggs from her five remaining chickens.  It seems that this Spring has been hard on folks raising chickens, as I was at another friends house outside of Milwaukee, WI. last week and they were also having a rough time with their chickens. Hardships, I would never have thought of-but through sharing with other lives, I became part of the conversation.  I'm hoping that conversations and life stories will be shared during the FH conference time as well.... 

I managed to pack everything in a carry on so Buzz doesn't get to angry with me, as this will be the first heat and humidity that the AV fistula will have experienced. Happy First day of Summer!

After a consultation with one of the top Vascular specialists in the US, I have been informed that my AV Fistula is a Gold Star, which means no additional surgeries at this time and LDL Apheresis treatment can begin...Several points that I have learned in regards to the AV fistula (I have named buzz) 

• It's not going to break or weaken
• The fistula can be reversed
• The tightness that I feel in the upper and forearm is the fistula growing which in return puts additional pressure on the surrounding tissue
• My fistula is about 1cm wide and is on the surface (usually in a thinner arm this is the case)
• I can carry and lift and pull objects as long as it's comfortable
• Cold weather it will constrict-hot weather expand
• The brewee and thrill will become louder or more active with blood pressure changes and or strengthening or weakening of the Fistula itself
• The fistula needs to be monitored usually with Apheresis treatment and routine ultra sounds
• Surgery to tie off veins may or may not relief the discomfort
• Because I am ambidextrous, biofeedback for nerve issues may be relevant

Buzz and I have started a new relationship, as I now feel that I have a better understanding of this entity in my body many thanks to the Doc that took the time with my husband I and shared what educational information that he is aware of for this rather new treatment in the  Cardiology world.