Looking for somebody to start a support group closer to home, Rebecca E. Johnson realized she was that somebody. In August of 2015 she began hosting the Hemet Pulmonary Fibrosis Support Group.
Johnson was diagnosed with the terminal lung disease in June of 2012. She had been sick a lot with bronchitis and after a visit to her granddaughter in Colorado Springs she found it difficult to breathe while climbing up and down the stairs in her two-story home.
After she returned to her Hemet home, she came down with bronchitis again. Her doctor finally did further testing and said she had Chronic Obstructive Pulmonary Disease.
“That really scared me so I found a pulmonologist,” said Johnson, 76. “He told me it was not COPD but Pulmonary Fibrosis and that not very many people know about the disease.”
She said it is scarring of the lungs and that over time, the scar tissue can destroy the normal lung tissue and make it hard for oxygen to get into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause shortness of breath, particularly upon exertion. The scarring can be caused by a multitude of factors.
“If the doctor doesn’t know where you got it from, it’s called Idiopathic Pulmonary Fibrosis – that’s what I have,” Johnson said.
Currently, there is no cure, nor a treatment to repair the damage to lung tissue caused by the rare disease. There is medication that may prolong life.
“They also tell us that from the date of our diagnosis, we only have two to five years to live,” Johnson said. “We do have to use oxygen; I have been on oxygen for the five years.”
A lung transplant is the only option left for survival but the process is long and difficult. Carmen Silva, of Homeland, was lucky enough to be healthy in all other respects and received a new lung on Feb. 14, 2007. She had been on standby two other times.
“It was Valentine’s day and I tell people I didn’t get a heart – I got a lung,” said Silva, 70.
She has been part of the Hemet support group since it began and enjoys going because there are always questions she can help answer.
“Rebecca is very gung-ho and I’m glad she’s the group leader,” Silva said.
Johnson started the support group because she needed it for herself. The closest groups were in Fontana, Norwalk and Rancho Mirage. After a few visits to the desert location, Johnson found it to be too far away and quit.
She contacted the PFFoundation to get help starting a group in Hemet, who provided $500 to pay for materials she needed to get the group going. Her doctor, Yurzul Dhanani, helped her find a meeting place.
Several members attend monthly meetings to help and support each other by discussing experiences with the disease and trading information regarding medications that work for them.
Bracha Sarah Meyerowitcz, who joined the group in March, was diagnosed with IPF in February.
“Rebecca has done a remarkable job of starting this group up and it is a comfort to go and be with other people who have the same thing,” Meyerowitcz said.
September is Pulmonary Fibrosis (PF) Awareness Month and Johnson is asking everyone to join the fight against this disease by attending an awareness and fundraising event in Hemet on Sept. 9.
IF YOU GO
What: First Annual Pulmonary Fibrosis Walk
When: September 9 at 9 a.m.
Where: Mary Henley Park, northwest corner of Kirby St. and Johnston Ave. in Hemet
Cost: Free
Information: 951-926-7800, www.pulmonaryfibrosis.org
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