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The Gift of Life
The founder of The Breathing Room and the creator of Through the Looking Glass: Images of Adults with Cystic Fibrosis, Michelle Compton, celebrated her third “birthday” on Dec. 3, 2001.
This marks three years since she was pulled back from the threshold of death and received the extraordinary gift of healthy new lungs in transplant surgery at Stanford University Hospital.
In celebration of Michelle’s survival, and in honor of her donor, a young woman whose family decided to donate their daughter’s organs so that others could live, we offer information to those with CF (or to those who love someone with CF) who are facing the necessity of transplant in order to survive.
During the last decade, with great fanfare, the gene that causes CF was discovered, and gave rise to hope and expectation that the cure was close at hand. This turned out to be false hope. There is still no cure for CF. Also during the last decade, a few improved treatments for CF were discovered. But there has not been a major new treatment introduced in several years now. The treatments have slightly lengthened average life expectancy, but little additional progress has been made. The average life expectancy for a person in the US with CF now stands at age 32, with virtually no improvement upon that benchmark for some time.
So people with advancing CF have few options. The course of the disease is different for every person. Some are able to live with relatively manageable symptoms and very slow progression of lung damage. Others experience steep decline in adolescence or young adulthood. Still others die in childhood. Often a single bad infection can lead to a serious, permanent loss of lung function and death. CF is fatal, and the usual cause of death is complete pulmonary failure due to infection and scarring from previous infections. Some people with CF are able to qualify for and receive lung transplant, which although it does not cure CF, provides tremendous improvements in quality of life and extends the length of life for those who were in endstage disease.
But TX is not for everyone. Some decide against it for their own reasons. Others will not be accepted as candidates, due to highly resistant infections they have or due to other special risks they represent. Donor lungs are in very short supply, and physicians have the decision-making authority on how best to allocate this very scarce resource. New lungs are not given to patients that have a very low chance of survival of TX or present risk factors
in terms of a lack of family support. And some who even qualify for TX and are on a list die while they are waiting.
And, in fact, some people who make it through the whole TX surgery survive for only a short time. Opportunistic infections and complications of the TX itself have taken the lives of several of our friends, each of whom got varying but short amounts of time to live a very different life than they had before TX.
With the help of a few friends of The Breathing Room, we have gathered some personal experiences to share with those who would like to know more about TX. We hope that this information will provide special support to those who may be struggling with the decision of whether to pursue lung transplant. And we hope it provides help to those families who are struggling to come to terms with the necessity.
In Their Own Words – People with CF Who Have Received New Lungs
Waiting, Watching, Helping, Hoping – The Caregivers
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