Cystic Fribrosis

Cystic Fribrosis questions and answers

Learn About Cystic Fribrosis Symptoms And Treatment.

Q: cystic fribrosis?
cystic fribrosis, i understand what it is but i dont no if you can die from it ? ive been told you can!!

A: Yes you can, but in recent years, people are living longer with CF, due to medical advances. Remember with CF all bodily secretions thicken. Also, some patients are getting lung transplants in their later years. Used to be the patient died before their teens, now living into their adult years. Follow doctors and respiratory therapist advice. Remember it takes 2 persons with the CF gene to produce a child with CF, they may be carriers of the gene, and not know it.

Q: Does anyone know anyone with cystic fribrosis?
I have just started dating a man and he has cystic fribrosis. I don't know much about this disease other than it's terminal. I'm scared now that I have developed strong feelings for a man who I might loose to this disease one day.

A: Unfortunate situation for the man you are dating. However, many advances have been made and continue to be made with treating CF and them living longer. Ultimately, one with CF may be lead down the road to be listed for a double lung transplant. This gives them a second chance at life. The survival rates are continuing to increase. Huge strides have been made in the past 5 years with post transplant meds. It is a life changing event and a strict med regimen has to be followed for the rest of their lives so they do not reject their new lungs. Not to mention that the meds are very expensive if you don't have insurance coverage for them. It would be a huge commitment to get involved with. You are correct in stating that you might lose them some day. BUT, that is a statement that you could say about anyone. You never know when someone will get cancer and die. You never know when someone you love will get killed in an accident. Look at it this way...if the tables were turned and you had CF, would you want someone great to love you? Wouldn't you want someone to give you a chance at love even if you knew that your life may be shorter than expected? Don't worry about the future. Cherish every day that you have now like it is YOUR last, not theirs. If you have strong feelings for this man, you already know what to do. If you realize that you can't be strong for this person, then you owe it to them as a human being to explain this to them.

Q: Cystic Fribrosis Doctors...?
Does anyone know any Cystic Fibrosis doctors who are taking patients in the Southern Maine area or a website that may have information pertaining to this? Thank you!

A: The Cystic Fibrosis Foundation will list CF treatment centers so you can find one that suits your needs. You didn't mention whether you are looking for a pediatric or adult program but I've never known one to not take a CF patient, although if it's a busy program you may have some difficulty scheduling appointments on short notice. The website for the CF Foundation is CFF.org and when I searched the treatment centers for Maine I found them located in Lewiston, ME Bangor, ME Portland, ME (this one notes both a pediatric and adult program) http://www.cff.org/home/

Q: Is there a certain color for Cystic Fibrosis support?
I was wondering if there is a certain color(s) for Cystic Fribrosis support? Like how the color for breast cancer is pink. I want to make a blanket for a baby I know who has it, but I don't know what colors to use. Thanks!

A: Well i'm in australia and its red here, and the symbol for it is a rose, a man wrote a song called '65 roses' because everytime his mother said to him that his sister had cysic fibrosis he couldn't understand what they were talking about, his sister having 65 roses, so when he was older and understood that it was cystic fibrosis, not 65 roses, he wrote a sone about it, so thats th song the use for it, and a red rose is the symbol, and they sell red armbands for fundraising.

Q: 8 week old nephew has only gained 8 oz?
He had gained 10 but has loss two oz since thanksgiving. He cries constantly and has no muscle tone. He can't hold his head up at all, can not track with his eyes, and doesn't seem to be able to focus well (his eyes still cross ALOT). He eats wells and is satisfied after eating not wanting to eat again for 3 hours. My sister in law is beside herself. He is going to a specialist in a couple of days. They told us to be prepared because the pediatrician thinks that he will be tested for cystic fribrosis, and CP. Please if these symptoms sound familiar to anyone let us know. We what to be prepared emotionally.

A: YES!!! My oldest was this exactly!! The first thing they did was test him for CF..he didn't have it. His liver levels were elevated, ended up having Alpha One Antitripsin w/liver disease. He is doing good now but there are people w/very complicated health problems. YES, be prepared for the worst. My son's pediatrician at the time told me that people with CF CAN live a long healthy life...that she had a patient in her 30's and that was good! Not very good news for a new mother w/a newborn. If he has hi liver enzymes have them check into the Alpha one, its a common disease but not highly tested for. If you need anymore info on this, plz, if you can, contact me and I can send you in the right direction. Good luck and I hope everything ends up fine. Stay strong!

Q: Is there a certain color for Cystic Fibrosis support?
I was wondering if there is a certain color(s) for Cystic Fribrosis support? Li

A: Well i'm in australia and its red here, and the symbol for it is a rose, a man wrote a song called '65 roses' because everytime his mother said to him that his sister had cysic fibrosis he couldn't understand what they were talking about, his sister having 65 roses, so when he was older and understood that it was cystic fibrosis, not 65 roses, he wrote a sone about it, so thats th song the use for it, and a red rose is the symbol, and they sell red armbands for fundraising.