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Pearl: Surviving Daughter of Pulmonary Fibrosis Patient
We love our mother with all our heart and watching her leave us, no one can imagine what it is like unless you have experienced it yourself.

Flower for Pearl by Shelley Ensz, ISN Artist On April 18, 2006, my mother died of fibrosis of the lung. We watched her struggle daily to breathe, yet there was nothing anyone could do, not even the doctor.

She was diagnosed about four years ago, first as pneumonia. We watched her lose weight at a rapid pace and her breathing became more difficult.

In her final stage she was bedridden and the oxygen she was taking no longer could produce any air to her lungs. She asked to go to the hospital on Monday April 17, 2006. She said that she was going to die that day, but instead she died early Tuesday morning about 1:40AM.

Our family is devastated. There was nothing we could do. We love our mother with all our heart and watching her leave us, no one can imagine what it is like unless you have experienced it yourself.

My mother was seventy-five years young.

I hope that there is a cure soon. There seems to be some form of medicine you can take for every other illness to prolong your life, but there is nothing you can take for fibrosis of the lungs, in the later stages.

To Contact the Author
Pearl
Email: Withheld by Request
Story edited 05-01-06 JTD
Story posted 05-02-06 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Survivor Stories in Memory
Fibrosis of the Lung
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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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Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
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Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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