Below is the technical terms about CF, but to sum it all up. I was born with the disease, and was not supposed to live past my teens. I beat the odds, but it's not been easy. I require to take over 15 medications daily, everyone of them are taken multiple times a day. Many days I am on IV antibiotics, to battle continuous lung infections. I have a med port in my chest that allows me to stay home, and even do charters while on these meds, which years ago I was required to stay in the hospital for 14 days to get these meds. I have had a lung collapse, and several abdominal surgeries since I was born. I must take 5 enzymes to help digest my food before every meal and every snack. thats over 30 pills a day, just for this one medication. I have a feeding tube in my stomach, which I have had for 16 yrs. I eat all the time, but must still do special formula through the feeding tube every night. I have to consume over 6,000 calories to maintain, my slim 105 lbs. I constantly cough up green mucus, almost all day long and especially during any physical activities, because my lungs only function at 22%. I have Osteoperosis, arthritis, frequent bowel obstructions, fattly pancrease and liver, and several other issues. I have health insurance but still pay over $15k a year in medical costs. The disease has done so much damage to my lungs I know am going through the long evaluation for a double lung transplant. Without this lung transplant I will more then likely not live more then a few years at the most. The transplant won't cure the CF, and may only keep me alive a few additional years. But all the pain from the surgery, the additional dozen antirejection meds needed daily will all be worth it to get any extra time with my family. Like every CF patient; everyday is a battle to stay alive. I share this with everyone, not for pitty, but to educate. CF rarely gets the public attention it deserves, this is my way to hopefully educate at least one person, one person that could make that extra donation that will find a cure for others.
What Is Cystic Fibrosis?
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 (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. 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, 40s and beyond.
Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including:
very salty-tasting skin;
persistent coughing, at times with phlegm;
frequent lung infections;
wheezing or shortness of breath;
poor growth/weight gain in spite of a good appetite; and
frequent greasy, bulky stools or difficulty in bowel movements.
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 45% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is more than 37 years.
Facts You May Not Know
A person suffering from cystic fibrosis will have to deal with being dependent on medication for the rest of his life, some upwards to 30 different medications per day, several needed multiple times per day.
Medical Costs for insured patients can exceed $10,000 per year. The cost to uninsured patients is astronomical forcing patients to cut out medications, nutrition and doctor visits, all critical to a CF patients survival
Every year, CF patients need one or more IV antibiotic sessions in the hospital to “clean” the lungs from bacteria. Usually an antibiotic session like this takes about 2 weeks
Despite the best efforts to take the required medication, an adult suffering from cystic fibrosis will also have to undergo a continuous physical therapy regimen.
This treatment will consist of daily chest massages to relieve the patient of the mucus that built up in the lungs during sleeping. As a child, the parents or therapist would be doing this for the patient, but as he grows up, he will need to learn how to do this for himself, with the use of PEP mask, vests or through “auto drainage”.
Physical therapies have to be executed two or three times a day, taking about 20 to 30 minutes per session.
Adult patients tend to use 2 nebulizer sessions per day: one in the morning and one in the evening. The inhaled medicines are bronchodilator, mucus thinner and when needed antibiotics. Each session takes about 10 to 15 minutes using the latest aerosols.
CF persons burn more calories than other people just by breathing, patients needs to maintain a diet that is high in calories and fat. I myself must take in a minimum of 4,000 calories to maintain my 105 lbs.
Advancements in medical research concerning cystic fibrosis have now made it possible for patients to live many years as adults. Nevertheless, lung function decreases over time due to lung scarring. After some time people aren't able to do normal physical activities like walking or going up a staircase. Luckily patients can look forward to a new beginning thanks to a lung transplant.