Biography

Nickname

robyn-whittingham

Location

Stamford CT

Relationship

Caregiver

Short Bio

In 2012, my husband was dx with pulmonary fibrosis, with a primary dx of scleroderma.  A year of chemo slowed down the progression of the disease, and hubby is maintained on immunosuppressants and related drugs. His dry, hacking cough is painful to hear, but he perserveres. Uses O2 as needed, not continuously.  Tires easily but he’s still active, even though just getting up and taking a shower in the morning is taxing on his body. Insidious disease. GOOD NEWS is that Ofev (Boeringer Ingleheim) has just been approved for PF patients!!!

Type of Diagnosis

PF of known aetiology

Treatment / Medical Facility

Yale New Haven/Winchester Chest Clinic

Current medication regimen

Mycophenolate, cough meds, GERD meds

Lung transplantation status

eligible, considering later

Supplemental Oxygen

yes

Best advice for PF symptom management

The most basic remedy: supplemental O2 is the best medicine. My husband can do small spurts of ‘normal’ activity (like wipe down his car) when he’s wearing his O2.

Are you currently taking an anti-fibrotic medication?

no

How did you find us?

Other

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

7 years

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