Cystic Fibrosis. What can be said about this terrible disease? It is a heriditary disease affecting the lungs, sweat glands, and digestive system. People who have cystic fibrosis have to take medications to help breath and digestive enzymes to aid in digestion. When a child is born and it is suspect that they have cystic fibrosis, they do what is called a sweat test on the baby. If it comes back positive, some other test are conducted to confirm it. Some of the symptoms of cystic fibrosis are the following (this is in no way a complete list):
Thick mucous affecting mostly the lungs making it rather difficult to breathe. In people with CF, water and salt can not move through the tiny cells easily which makes it dry. The body then produces thick, mucus. Because of the thick mucous, many different bacteria like to make a home in the lungs causing further inflamation and mucous production. Some of the technical names are allergic bronchopulmonary aspergillosis, pseudomonus. The person with CF will be put on a regime of antibiotics and drugs that thin the mucous.
Growth issues. Most of the time CF people will not grow to be very tall and due to digestive and pancreatic issues, they are usually underweight.
Clubbing of the fingers and toes. This happens over years of low oxygen supply to the body.
Treatmenst Include:
CPT or Chest Physical Therapy. This is done usually by the parent and the Respiratory Therapist. There is always the pneumatic vest. It does wonders to help get the secretions moving.
Bronchodilators: Albuterol, Levealbuterol, ipatroprium bromide, tiatroprium bromide, to name a few of the more well known ones. These help open the lungs to aid in the coughing up of the mucous.
Antibiotics: Whether they be IV or nebulized antibiotics they help fight off the diseases that like to camp out in the mucous.
Lung Transplant: One of the respiratory therapists that I used to work with (she had to quit. Her doctor felt she was exposing herself to too many germs), she and her brother have cystic fibrosis. Both of them have now received lung transplants and are doing amazing.
To get on a lung transplant list, one has to be sick enough to be very ill, but well enough to be able to take on new organs. One of my dear friend's daughter has CF and that kind of brings the illness right home. When I went to see her, I would hear her daughter cough that deep, uckky cough and I would want to do something to make her better.
Maybe some day there will be a cure for cystic fibrosis....to learn more about this disease, please go to www.cff.org that is the cystic fibrosis foundation home.
1 comment:
I think you've done a wonderful job of describing it.
I could only add a few things as the mother of a child with cystic fibrosis...
Her life is normal to her, she does four breathing and vest treatments a day that include duoneb (albuterol/atrovent), mucomyst, pulmozyme, and she alternates every 28 days between tobramycin and colistimethate. Two hours of her day are taken up with treatments and now that she's twelve, she knows exactly what she's missing because she sees her friends carefree lives and she wants to live that way too. Her preteen state of mind is causing problems for her health and she's been in and out of the hospital several times in the last year. The focus for everyone involved in her life is to get her to see how serious taking care of herself is, and how if she DOES take care of herself, she can have more time to do the things that her friends get to do. Right now along with the breathing/vest treatments we're doing IV antibiotics at home. Every twelve hours she does tobramycin and every 8 hours she does merrem. She also has a feeding tube that she's hooked up to at night to help her gain weight. She gets about 2200 calories every night through the tube and still has a hard time gaining weight because of how hard her body works to breathe. However, if you were to see her in the mall, you probably would never guess that she's got all this stuff to do, she's happy enough, she acts normal, she does what other kids do. She tries really hard to fit in and even though she missed over 40 days last year, she still managed to keep some friends. She doesn't want anyone to feel sorry for her, but she wants people to know that it isn't easy either. So don't treat her special, but acknowledge the fact that it is hard for her and she is smart to be able to take care of what she does. Some day, hopefully, it will be easier for her to deal with and it will be easier for me to let her.
Thank you, Song!
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