How Close Can One With Cystic Fibrosis Be to Living a “normal” Life?
Thursday, December 24th, 2009 at
5:13 am
Nic asked:
On a scale of 1-10 (10 being closest to “normal” living), where does one with CF fall? How does it affect things emotionally? Financially?
I am doing a project on Cystic Fibrosis, and some (well most) sources are too general in explaining how life really is.
Tagged with: Cf • Cystic Fibrosis
Filed under: Cystic Fibrosis
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It really varies with the person.
My boyfriend is very fortunate– he has a mild case. At 19, he’s only had to have sinus-clearing surgery twice (three times? I can’t remember), and is expected to live well past the 37-year median age of survival. There are many people that don’t ever make it to adulthood.
Most CF patients are at a nine. They take pills with every meal (pancreatic lipase, the number of pills is determined by weight of the person), which is more problematic for kids than for adults (for small children, the enzyme pills are mixed with applesauce or ketchup). Every other month, my boyfriend has a tobi-abuterol treatment he does twice a day (it’s an antibiotic and a bronchidilator, respectively). Women can still have children (men are generally sterile). CF patients can still play sports (sports and choir are actually encouraged, because of the lung exercise) and do everything else that others do. They can eat as much as they want, because they’re still going to be skinny. They lead normal lives.
What it takes to make them healthy: Exercise is the single most important thing. Adequate nutrition is the other–sure, they can eat all they want, but since they’re bodies are absorbing less, they need to eat more nutritionally-dense foods. CF patients are more prone to infection, and thus it is more important to stay active and healthy in the winter months, when infection is more prevalent in the general population
Finances are very hard. Insurance policies generally cover generic and brand name prescriptions, but what about “rare” ones? almost all CF prescriptions (Tobi, Creon-5, Abuterol) fall under that category. Insurance plans that require you to go to netwok doctors can be very frustrating–at my boyfriend’s last doctor appointment, we walked in of his doctor pulling up the Cystic Fibrosis Wikipedia page. We’ve been dating for several years, but have yet to get married because we can’t afford the health insurance (which is now covered by his mom’s work policy).
Emotionally, it’s hard on the family–CF awareness is very low, and it’s very hard to know that the love of your life will die before you have a 30 or 40 year anniversary with them. There are no drugs that have been tested and deemed safe for elderly CF patients, because there are not enough elderly CF patients to test them on. It’s hard for the CF patient to know that they have a shorter life, but not to really know how short that life may be. To be a CF patient, or to be close to one, is emotionally painful. Knowing you’re going to die, or that the love of your life is going to die, HURTS.
I know it sounds silly, but thank you so much for doing this project. Thank you SO much. CF awareness is ridiculously low.
my best friend has CF and she she has it quite mild for now anyway. On a good day id say she’s about an 8 and on bad das maybe a 7.