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IPF is not behind me
When I received a bilateral lung transplant in July 2021 I thought Idiopathic pulmonary fibrosis (IPF) was behind me. Wow, I was wrong.
There was no family history until my younger brother was recently diagnosed with IPF. I wrote about that diagnosis in a recent column, A new twist in my journey: Familial idiopathic pulmonary fibrosis.
I am beginning to learn more about familial IPF and would like to hear from you if you have a familial IPF diagnosis.
Does PF run in your family? How do you cope with it?
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3 Replies
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My mother died of it in 2008 at age 91 after only about 2 years of symptoms. Her mother, my grandmother died of it in 1968 at age 85 or so. My cousin, same family line, died of it in about 2008 at age 74. Now my turn, age 75 now, discovered at age 71. Mine is not yet very advanced, lung function still very good except at high altitudes. I’m hoping mine will be like my Mom’s and let me live into my nineties. I stay active to increase those odds. My younger sister has been assessed though she has no symptoms and found to have no scarring. She did that in conjunction with a genetics study in Colorado.
I also had some gene testing done that tells me I don’t have the short telemeres or some other genes that are suspected of being related to PF.
It all remains pretty mysterious.
Wishing you and your family all the best.
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Thanks, Sally. This disease is so unpredictable.
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I have familiar pulmonary fibrosis. My mother has it as well as two of her cousins. 2 months ago, my first cousin was diagnosed with it.
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