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JOYCE'S JOURNEY #4 - How it all started...

Many of you have asked what led to Joyce’s medical problems, it’s a long story.

33 years ago Joyce was diagnosed with rheumatoid arthritis (RA).  This is a connective tissue disease that can affect any part of the body, not just the joints.  However, the joints are what cause most symptoms for patients with RA.  As her disease progressed and symptoms became more severe, Joyce was fortunate enough to have newer medications available and began taking Enbrel in 1999. Enbrel suppresses the body’s immune response, relieving symptoms and slowing or halting progression of the disease; and for nearly 10 years she was mostly free of symptoms and leading an active, healthy life.

She first noticed breathing difficulties while visiting our daughter in Colorado, at the birth of our grandson, Alden.  Once back in California, she saw a pulmonologist who initially diagnosed her with ILD, a complication of RA, which is progressive and has no cure.  Over the next 4 years her symptoms (mostly shortness of breath on exertion) progressed very slowly, but there were indications that something else was wrong.  We decided to get a second opinion at UCLA Hospital.  Joyce was diagnosed with a chronic, fungal lung infection, which we believe was due to the immunosuppression from her RA medicines.

In 2012 we had her first real scare, she began coughing up blood; the fungus had so damaged her lungs that it created room for bacterial infections to flourish.  She had contracted an antibiotic-resistant lung infection.  She spent 9 days in the hospital, coming home with a PICC line to administer antibiotics 4-6 times daily over the next 6 months.  Miraculously, she beat the bug and was mostly back to normal in early 2014.  She remained fairly stable through 2014 and 2015 and most of 2016, able to function without oxygen supplementation and walk a flight of stairs, albeit winded at the end.

The winter of 2016 brought on a bought of pneumonia and a new bug, one that is common in patients with cystic fibrosis.  A PICC line again and a round of antibiotics for 6 more months, with ever decreasing lung function.  The winter of 2017 was even worse, with several bouts of pneumonia and IV antibiotics and Joyce left unable to breathe without O2 supplementation. 

Her doctors had been warning us that ultimately her only chance would be a lung transplant.  We had finally reached that point.  2018 was a rough year, the process to become listed for transplant is arduous.  Joyce began the testing in March and was listed on December 10.  And now we wait.

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