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Keenan: Surviving Son of Fibrosing Alveolitis Patient

It is tough to write about, but cathartic as well.

Dad passed away now almost four years ago. It still hurts knowing that I will never be able to ask his advice or listen to his corny jokes again. He was just fifty-eight years old.

Although Dad was a heavy smoker for much of his life, I am told that the fibrosing alveolitis that killed him could not be directly related to this. In fact, nothing could be directly related and, indeed, it took some time to diagnose the problem.

The end came relatively rapidly. From the time of initial diagnosis, there were eighteen short months. The disease got worse, rendering it a chore for dad to even walk to the mailbox. The steroids helped very little and, in the end, ever-increasing doses of morphine meant he lost some of his lucidity.

It is a cruel disease, with no cure. The scarring gets worse, and the shortness of breath more desperate. Finally dad succumbed and was released from the ever-harder battle to simply breathe.

It's tough to write about, but cathartic as well. I miss him a lot and wish that I could have just a little more time to tell him how much I love him.

Lung diseases are dreadful, but I hope that the experts continue their research so that our loved ones can live easier and longer.

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This Story is Featured in Voices of Scleroderma Volume 1

The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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