Diagnosed with Systemic Lupus at 37 years old

 

Glen Massie

Simple tasks that became impossible because of rheumatic disease:

  • Walking
  • Sitting up
  • Talking

Overview

On the surface, Glen Massie is a 48-year-old man who is happily married with two kids. He works as a transportation planner with the local Metropolitan Planning Organization, and his “free” time is spent giving back. In big ways. From his active membership in the Marine Corps League, to his participation in a local bluegrass group, to his involvement in fundraising efforts for the Vasculitis Foundation, Glen’s thumbprint on the community is hard to miss. And he also volunteers his time as a clown, making others laugh.

Below the surface is an incredibly difficult path Glen has traveled to overcome life-changing struggles that most of us can’t fathom. He testifies that his journey with Vasculitis (Granulomatosis with Polyangiitis) has not only been challenging – it has been crucial in making him the man he is today.

Glen’s Medical Journey

In fall 2011, Glen began to develop nose bleeds, sinus problems and a severe ear infection with significant hearing loss. He saw several doctors who treated him with antibiotics. His symptoms worsened as he developed plueral effusions (fluid build-up in the chest cavity). He then saw a pulmonologist who sent him for a thoracentesis procedure. Within days of the procedure, the pleural effusion re-developed, ultimately leading to two more thoracentesis procedures. Next, he developed incredibly painful joint pains in his knees, elbows, wrists and hips, immediately followed by a petechiae or purpura rash (purple dots) on his legs and abdominal area.

It was at this time he received a suspected diagnosis that was followed by biopsies to confirm. At the time of the suspected diagnosis, his local rheumatologist started him on Prednisone. Before the biopsy results were returned, he began coughing up large amounts of blood and was hospitalized locally in ICU.

While in ICU, he went into respiratory failure and was flown to the Cleveland Clinic where he was hospitalized for nearly a month. He spent 10 days on a ventilator in the Cleveland Clinic ICU. While he was on the ventilator, he received a number of respiratory treatments, several plasmapheresis treatments (a procedure that cleans and replaces plasma), and a necessary immuno-suppresive medication called cyclophosphamide or Cytoxan.

On the eleventh day in the Cleveland Clinic ICU, he was extubated and taken off of the ventilator. He was observed for a couple days before being moved to a step-down unit. Upon his discharge from Cleveland Clinic, the medical team ordered him into an Acute Rehabilitation Unit in his hometown of Springfield, Ohio.

Glen had no real idea about the impact of the disease and a lengthy critical care hospitalization. He was unable to perform most of the tasks that were a normal part of everyday life. He was unable to sit up without assistance, and he couldn’t stand or walk. He was unable to brush his teeth, shave or even hold a wash cloth. He had difficulty forming sentences when he spoke. He left a big part of himself behind in an ICU bed that he had to learn to re-live.

While in Acute Rehabilitation, he spent many hours with physical therapists, occupational therapists, speech therapists and physicians who specialize in physical rehab. After a two-week rehabilitation period, he was able to return home with the assistance of a walker. He continued his therapy sessions with an outpatient facility for nearly a year after returning home. He also saw a psychologist during his rehab period who helped him get a grip on the emotional stress of the whole experience and to help him recollect who he was prior to the onset of the illness.

Glen’s Window of Opportunity: Laughter is the Best Medicine

Since being diagnosed with Vasculitis and receiving proper treatment, Glen is now much more active than he was prior to the onset. He does everything he did prior to having Vasculitis. He returned to full-time work about two weeks after his release from the Acute Rehabilitation Unit and still works a second job. He is now more involved with his church and has taken on a new passion: supporting and educating others about the effects of Vasculitis through his involvement with the Vasculitis Foundation and their Support & Education Committee. He is also a co-coordinator of Vasculitis Foundation’s West Central Ohio Chapter.

And on top of everything, he recognizes the importance of laughter. Through his involvement as a member of a professional clown alley in Ohio, he donates his time to Special Wish Foundation and other non-profits in need. He has also turned his clown talents toward education and fundraising efforts for Vasculitis Foundation.

Glen is a 48-year-old living with Vasculitis, with a positive outlook on his diagnosis and the future of rheumatology. Through education and awareness, Glen hopes his story will help others understand the disease and provide support to patients going through similar challenges.