Biography

Name

Barbara Wright

Nickname

barbara-wright

Year of Birth

1949

Gender

Female

Location

Sarasota / Bradenton, FL

Relationship

Patient

Short Bio

I am age 69 and the owner (with my husband) of a small accounting firm (6 employees) in Sarasota, FL. We’ve been in business for 44 years and I am still active with new and prospective client meetings, preparing tax returns seasonally, managing staff, and performing IRS representation services. Surprisingly, the oxygen cannula does not seem to discourage prospective clients from signing up for our services and the staff is very supportive. We are scaling back my participation now to allow for my additional fatigue and for recreation like my love of golf. We have just set up an office in our home so  I can work remotely. I hope to take up painting again soon, too, which I gave up when we started the business.

Diagnosed w/ IPF after an open lung biopsy in June of 2017. This was triggered by chest pains in December of 2016 that were investigated by my GP and included a chest CT scan. After the source of the pain was identified and fixed (T-3 compression fracture), the GP said there were “little scarry things on my lungs”.  I asked what they were and he referred me to a pulmonologist, who eventually ordered the biopsy for a positive diagnosis.   I am comfortable with my Pulmonologist and he is delivering Standard of Care. in Sarasota. He has no interest in any cutting edge stuff, but has encouraged me to travel to Denver to National Jewish for a “second opinion”.   This is the same pulmonologist that my mom saw when she had IPF 10 years ago. Sadly, she passed away 18 months after diagnosis. He says he has 2 or 3 other patients with an IPF diagnosis.

I started Esbriet July 2017. Lots of side effects mostly gastroenterological. Lost 40 pounds the first 16 months, but now seem to be stabilized and a little underweight now. Few remaining side effects besides little to no interest in eating and most food upsets my stomach, even when I eat small portions of the non-trigger foods.

Doc says my IPF is fairly stable although I was put on 3 lpm O2 in August of 2018 which I use all the time and crank it up when I exercise.  I feel like we caught my condition early and I feel good that the doc encouraged me to get the biopsy so I could get a definitive diagnosis in order for him to prescribe the correct medication.

Passed the initial screening for the Galapogos trial and awaiting their decision within the week to allow me to proceed to the second screening and I hope approval to participate in the study. The study coordinator is very optimistic, as I have conformed to all their inclusion criteria.

 

Type of Diagnosis

IPF

Treatment / Medical Facility

Individual Pulmonologist

Current medication regimen

Esbriet 267 mg 9 pills daily (in batches of 3 with food)

Supplemental Oxygen

yes

Best advice for PF symptom management

Listen to your body, exercise moderately and eat well.

Are you currently taking an anti-fibrotic medication?

yes

How did you find us?

Friend

How long have you or the person that you are caring for had PF?

2 years

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