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.

Visited one of the three LDL Apheresis treatment facilities in the state of Wisconsin this weekend. I must say it was a sunny, clean room with easy access to the main entry of the building.  Supportive staff members are two, both whom come with multiple years of experience.

Happy Mother's Day to everyone.  It's a double meaning day, as my son was born on Mothers Day so lately since he has been in his twenties he would rather have a hang-out with friends than a brunch with mom-yeah we get it!  But, thanks for the beautiful plant, card, and phone call regardless.  

It's a quiet holiday the weather isn't sure what it wants to do, meanwhile the south facing windows are getting crowded with vegetable and herb plants waiting to be transplanted into the fertile garden areas.  Spring and plants helps me to focus on new things yet I realize the importance of my current health conditions.

I have visited many health pages online and decided that we are going for a second opinion  in Madison to a Vascular specialists that is ranked rather high in the country.  Hubby and I decided that some fresh insights and discussion are needed-the last go around with three separate medical facilities and specialists that aren't coordinating left us crazzzzyyyy.  “You should not hesitate to get a second opinion in fear of offending your physician,” says Gerald Fletcher, M.D., a cardiologist and professor of medicine in the Mayo Clinic College of Medicine in Jacksonville, Fla., who also volunteers for the American Heart Association.
Okay an appointment at the end of the month has been scheduled and we can tag it onto opening the cottage for the next three seasons...good things. 

Meanwhile it has been over two and a half weeks since the LDL Apheresis attempt and my fistula site is almost clear from all the bruises and discolorations...just in time for more tests to determine the access areas of the fistula. Meanwhile, I hope to be in contact with individuals with AV fistulas receiving LDL Apheresis around the country-something like a support system
through the FH Foundation.  It is one of the components that the foundation hopes to get off the ground in the near future. I so look forward to spring and remain hopeful to all that blooms and emerges within my life.

Met with my Vascular specialists today file folder in hand and a positive attitude.  He is a very gentle kind individual a personality that isn't to common in the cardiology world.  He listens, and I can hear myself listening, calming...He listened for over an hour and I think I forgot to say thank-you...I will need to send him out a card of thanks as a patient to a Doctor.

I believe he heard my concerns...and I remain hopeful that we can make a few needed changes for a healthier environment and treatment procedures for us patients hoping to experience a few more years of sunshine...more later, hubby just arrived home from work.

25. April. 2013 LDL Apheresis that didn't happen

First scheduled Apheresis treatment and everything is a go; schedule has been arranged, weather is clear and I feel ready.  Ready as any person facing a new medical treatment.  To begin with I had over scheduled myself in the morning, so I re-thought and prioritized to best prepare my mind and body.  I think this is a good thing to remember on treatment day so I re-focused by cooking a breakfast and lunch of calcium rich foods and a special care package for the afternoon.  I made the electrolyte potion with fresh oranges, orange rinds, honey, salt and water. A supply of calcium snacks-almonds and edamame then packed my briefcase with computer and periodicals.  I was ready to go.

After walking what feels like an eternity to the dark lit hallway on the 4^th floor of the hospital I opened the door to the room only to find another technician and patient by the plasma machine about six feet from the  Aheresis  machine and the recliner style chair.  She explained that my RN would be just a minute and made all the polite introductions etc. that is common during a ladies social.  I really wasn't  feeling like exchanging lives and when faced in a nervous situation I have a tendency to over chatter….I did apologize and settled into my chair.

My RN explained a few procedural points while I read and signed hospital agreement forms and what knots.  She then began to insert the catheters into my virgin fistula-one in one to go!  Ouch…the next catheter didn't go so well and both RN’s pushed and turned trying to get the darn needle into the fistula…ouch, no go out that came pressure applied and another site was discussed and re-discussed and both RN’s determined it was the exact spot-same gig…nothing…Ouch now a clamp on the artery and a great deal of adjectives that describe a disappointing situation.  The only situation remotely compared to this treatment, might be an oil driller, tapping into the earth for the good stuff to bring wealth, although I am reaching for a different kind of wealth, the wealth of life…

Hubby applied Ice packs every fifteen minutes for seven hours which the RN had prescribed (as the treatment room only had ice chips placed inside a latex glove) since I didn't have enough energy to get up and down, feeling like an emotional, exhausted wet noodle.  Later that evening  a dear friend from a club I belong  to sent a card, a lovely card, filled with spring flowers and a note “just letting me know that she was thinking of me today”  and went on to express how difficult a year I have had…I cried for the first time in a very long time.

Wanted to include the drawing that the surgeon made on my fistula arm for the apheresis procedure, prior to it washing off! First scheduled apt. is April 11, 2013...