|Year of Birth
Winnipeg, Manitoba, Canada
First indications of PF were visible on an X-ray in 2007, but wasn’t confirmed with a HR CT until 2017. I am 58 yrs old have autoimmune (RA) related PF. I don’t tolerate the anti-fibrotics, I’ve had my colon removed due to cancer and treatment so suffer from chronic diarrhea. In all these years the PF has progressed only mildly. I have several other co morbidities that impact hugely on my quality of life, all of which are the result of long term effects of cancer treatment including; chronic anemia, cardiomyopathy, chronic migraines, chronic abdominal pain. However, I am grateful to be alive. I had to stop working due to my health at the age of 47- a career I loved and felt I was able to contribute. I was a Nursing Director of a Palliative Care Program in Winnipeg , Canada. I worked in PC for many years and it continues to be a cause I actively advocate for! I am not eligible for a lung transplant and I am not sure I would consider that route if I were.
|Type of Diagnosis
PF of known aetiology
|Treatment / Medical Facility
Health Sciences Center, University of Manitoba
|Current medication regimen
|Lung transplantation status
|Best advice for PF symptom management
Report any changes immediately to your doctor. Stay as active as possible. Participate in Pulmonary Rehab. Stay well hydrated. Seek out palliative care early for management of symptoms including, but not limited to , pain, shortness of breath, cough and any others. Also seek out Pc for counselling and support for the entire family. It is never too early!
Don’t hesitate to use supplementary oxygen as prescribed.
Allow yourself time to grieve and don’t put pressure on yourself to be positive all of the time! Read about chronic illness in general. Helps put it in perspective. The impacts of PF are similar to most chronic illnesses.
Live each day and don’t get obsessed with the disease.
|Are you currently taking an anti-fibrotic medication?
|How did you find us?
|How long have you or the person that you are caring for had PF?