Three and a half years ago, I lost my husband of 35 years to idiopathic familial pulmonary fibrosis. He was 56 years old. This disease rattles his family tree. His father, younger brother, two female cousins, an uncle and two aunts have all had it.
He had the disease for three and a half years, from diagnosis to passing.
We were told that he needed to be on oxygen before he would be put on the transplant list. He was started on O2 on September 2, 2016 and passed three weeks later.
I am FURIOUS that he couldn't get on that list until he started O2. He had three and a half years where it could have happened, where he was strong enough. For his disease, a transplant was the only option.
I have three adult children and am terrified that they will be attacked with this horrific disease. We try to be proactive and mindful of the air we breath in case there is a chance that something will trigger this ugly monster.
Please advocate for better rules regarding transplants.