Lisa Norris and AL Amyloidosis

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Hi my name is Lisa Norris age 46 from Delmar NY, a suburb of Albany.

I am on Disability from my Amyloidosis as I had to give up teaching dog training, judging dog sports and working as a veterinary assistant.
I have Amyloidosis in my lungs and breast tissue.  My lung function is just 39% and my road to diagnosis was full of misdiagnosis and clueless doctors.
• I was working as a first responder in post-Katrina New Orleans doing Animal Rescue for Best Friends doe the better part of a year 2005-06.  While there I experienced shortness of breath that I just thought was an allergy or reaction to the black mold and the many toxins in the soil and air.  I was paid on a stipend from Best Friends and I had no health insurance.

Once my work in NOLA winded down, I moved to Florida in summer of 2006 where I took a job at an equestrian center that gave me health insurance.  There I continued having breathing problems which again I thought were allergies.  Instead, I was diagnosed as being Severely Asthmatic and prescribed steroids and nebulizer treatments.  However, I saw no improvement in my breathing and the steroids were triggering problems with my Bipolar Disorder.I then moved back to New York in 2009 and again sought medical care and again was misdiagnosed & treated for Asthma all the while losing lung function.  Finally I found my way to a pulmonary doctor who had the guts to take me off all the steroids and do a bronchoscopy in 2011 where they found a 2cm mass in my trachea.  Biopsy revealed it was Amyloidosis.I was living in NOLA in my camper working for Best Friends Animal Sanctuary evacuating storm animals and was on call 24/7 at our shelter.  I was also at the top of my game as an dog agility handler, trainer & judge, reaching the Cynosport world championship finals as 5th seed with my dog.  I then made a major life change and moved to Florida with a significant other.• I have been feeling the effects of my Amyloidosis since 2005.  Prior to my correct diagnosis I was hospitalized several times for inability to breathe and treated for asthma and pneumonia symptoms.  By the time I was correctly diagnosed I was down to only 39% lung function.

I have had to give up running dogs in agility as I cannot even walk much more than 100 feet at a time before getting too out of breath and my O2 levels drop drastically.  With that I also had to give up teaching and judging as I cannot keep up with the rigorous activity required for such.  I now live on SSI Disability and reside back at home with my mother.

In 2012 I received 2 weeks of low-dose radiation on my lungs and then I did 6 months of chemotherapy with Velcade and Deximethisone. The radiation and chemo served to stop the progression of the disease so now I am in remission and no longer losing lung function.  I am dependant on Oxygen 24/7 and am tied to a concentrator or tank at all times.

I’ve lost everything I owned.  The house my boyfriend in Florida and I bought together was foreclosed on;  When my truck was totaled I could not afford to replace it so I now do not own a car.  I am limited to a subsistence living on SSI month to month payments.

I have applied to take part in a couple experimental drug treatment trials.  However I was told I am too sick to qualify as my lung function is too far gone to risk me having an adverse reaction to the meds.

My Mom has been the life force behind me getting treatments, travelling to Boston Medical Center for all of my workups and treatment plans.  My new boyfriend of 7 years, Clancy, has rallied around me and has been absolutely wonderful.  I think most of our dates the first year we were together were spent with me in the hospital.  And then there is my Agility family who, time after time, has banded together holding  many fundraiser raffles, run-thrus and breakfast parties all to raise money for me to travel to and stay in Boston MA for my care.  My now ex-boyfriend in Florida didn’t believe me when my Asthma treatments badly affected my Bipolar Disorder, claiming I was just being a bitch.  He became very abusive and I had to have him arrested when I refugeed out of there.

It has been an emotional rollercoaster losing everything I owned, giving up work I loved doing and being forced to live on the sidelines of life.  I try to remain positive.   After all I am a Positive Reinforcement trainer and I do manage to screw on a smile.