Cystic Fibrosis (CF) is a genetically terminal disease that is most common among Caucasians. CF affects the respiratory and digestive system for most of those that are diagnosed. CF causes heavy secretions in several areas of the body. In the digestive system – the pancreas does not function properly requiring us to take pancreatic enzymes with each meal to help us digest the food we eat. Unfortunately, CFers usually have a hard time retaining all of food’s nutritional value which causes most of us to constantly struggle to maintain and gain weight. In fact, before transplant Adam had a feeding tube in his stomach for many years to help him ingest 2,000 extra calories while sleeping.
In the respiratory system- Cystic Fibrosis restricts the breathing airways and usually results in the need of a lung transplant later in life. Thick sticky mucus builds up in the lungs making it extremely difficult to breathe or fight off infection. This is why CFers administer breathing treatments to help them break down and get rid of (cough up) as much of the mucus as we can. CF is a progressive terminal illness. Those with the disease are rarely able to increase lung capacity and doctors are always honest about the fact that they simply try to slow down the decrease of lung capacity. When Adam was diagnosed with Cystic Fibrosis at age 1 in 1982. the average life span was 9 years old. Today it is about 37 years.
How does it feel?
Being that CF is progressive, Adam’s lung capacity has always dropped slowly so he never noticed a big difference in his day-to-day breathing. He was mostly short of breath and easily fatigued before his transplant. Adam’s lung capacity was at 20% and he weighed 114 pounds on the day of his transplant. It was harder to catch his breath and his inhaling and exhaling became very labored. Climbing a flight of stairs wiped Adam out completely, sometimes for the rest of the day. Experts say that if you want to know what it feels like to breathe with CF, simply plug your nose, put a cocktail straw in your mouth and try to breathe through it. That may be a bit dramatic, but you get the idea…
Today Adam is 17 months post-transplant and he’s breathing and feeling like a new person. His lung capacity is at 90% (and rising) and he weighs 137 pounds. He has never had lung capacity that high in his entire life. Even though Mr. Young has a MRSA (Methicillin -Resisant Staphylococcus Aureus) infection in his lungs, there is currently zero sign of rejection and his doctors are confident that he is doing very well as a lung transplant recipient.
For more information, you can visit CFF.org!