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Breathing Room has lots in store
for the year. If you would like to share your personal
stories, news items or poetry with us, please contact:
us at: info at thebreathingroom.org.
Stories, Poems
and opinions of participants are their own, and not necessarily
those of the Breathing Room organization.
Please visit
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community online.
Breathing Room
facilitates candid and open
communication between adults with Cystic Fibrosis,
supports the development of a community of adults with CF
and provides education and insight for families, caregivers,
and medical professionals who impact our lives.
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The Gift of Life
Continued
People who have had lung transplant—in their own words
If you have CF, when you are first challenged by your disease to the point that you have to face the question of transplant (TX), it is sometimes difficult to get information that feels real. Even the first suggestion from your doctor that you should begin to consider transplant is shocking and frightening for nearly everyone. For most people with CF, this endstage of the disease is when the hardest decisions have to be made. We asked a few of our CF friends who have gone through lung transplant a few questions about their experience. Special thanks to three of our friends who participated in this project to provide personal, practical information about transplant. Here, in their own words, is what the journey has been like for each of them.
How old were you when you had your TX?
As a school-age child, were you restricted from taking part in the same vigorous activities as your peers?
- “I was a very active child and not really restricted from any physical activities.”
- “Not restricted at all.”
- “No restrictions.”
At what age did you notice decrease in your stamina, or was it so gradual that you didn’t really notice?
- “I had a big decrease in stamina after two severe bouts of infection and hemoptysis (coughing up blood), one at age 17 and another at age 24. I believe that the lung bleeding caused severe scarring. I definitely was ‘worse’ after these episodes.”
- “It was gradual, but starting in college I noticed a big decrease in ability and stamina.”
- “About 27 years old. It was gradual.”
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