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TO LOVE LIKE YOU WERE DYING


A remarkably honest review of the daily lives of two parents and their four children; two of which suffer from the cruel incurable disease known as Cystic Fibrosis.

So many debilitating illnesses; asthma, cancer, tuberculosis, ADD, autism, retardation, sight and hearing impairments, cerebral palsy and other genetic mutations are so terribly difficult to deal with.

The death rate extrapolations for Cystic Fibrosis in the USA are approximately 484 per year, 40 per month, 9 per week or 1 per day.

Although technically a rare disease, cystic fibrosis is ranked as one of the most widespread life-shortening genetic diseases. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. It is most common among nations in the Western world; one in twenty-two people is a carrier of one gene for CF, making it the most common genetic disease. In the United States, 1 in 4,000 children are born with CF.

Lung transplantation often becomes necessary for individuals with cystic fibrosis as lung function and exercise tolerance declines. Although single lung transplantation is possible in other diseases, individuals with CF must have both lungs replaced because the remaining lung would contain bacteria that could infect the transplanted lung.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. In the 1980s life expectancy of people with cystic fibrosis was 14 years. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s and beyond. Cystic Fibrosis was once always fatal in childhood. Better treatment methods developed over the past 20 years have increased the average lifespan of Cystic Fibrosis patients to nearly 36 years. The median life expectancy of a newborn with cystic fibrosis has increased from 4 years to 32 years. 80% of patients are diagnosed by the age of three. 10% of patients are diagnosed at the age of 18 and 3% patients are diagnosed in adulthood.

CF is one of the most common inherited diseases of Caucasians. CF occurs in one of every 3,200 live Caucasian births. It occurs in one in every 15,000 live African-American births. CF is uncommon in Asians and most Native Americans.

CF affects almost every race. About 1,000 new cases of CF are diagnosed each year.
Not all people carry the defective gene that causes CF, so if one parent has the gene and the other does not, the child will not have CF.

At present, neither gene therapy nor any other kind of treatment exists for the basic causes of Cystic Fibrosis, although several drug-based approaches are being investigated. In the meantime, the best that doctors can do is to ease the symptoms of Cystic Fibrosis or slow the progress of the disease so the patient's quality of life is improved. This is achieved by antibiotic therapy combined with treatments to clear the thick mucus from the lungs. The therapy is tailored to the needs of each patient. For patients whose disease is very advanced, lung transplantation may be an option.

In "TO LOVE LIKE YOU WERE DYING" the day to day routines of medications, in home nursing and hospice care to the atypical hospitalizations and surgeries, each family member has a unique view on how the illness takes its toll on each member of the family.

From one older healthy sibling to a younger also healthy sibling, the views and outlooks are so different and so distinctive from the viewpoint of their two siblings dealing with the disease.
This work is written form both parents. Each chapter is followed by the views and experiences of the spouse on the same subject as they move from when they first learned of the disease through their current life trying to make the most of each and every day.

This heartfelt book is an extraordinary opportunity for other parents and siblings of children with chronic illnesses; almost an orientation of experiences, mistakes, and positive steps forward not only as individuals but together as one united family.

This work is filled with actual experiences, humor, and realistic feelings both admitted and once held private by each family member. Filled with the thoughts of each child and their own points of view; from unwarranted jealousy from all the attention two siblings have to the resentment of an older sibling’s teenage life being so completely unpredictable, this work is a rare look inside the family live and dealing with mortality on all age levels.