only 30,000 people in the US have cystic fibrosis.
that’s like 60 cases per state.
this fact stopped my husband in his tracks.
ya know, the same husband who i have proclaimed is always the positive one.
yeah, that guy.
we are still dealing with the reality of this disease.
…and the severity of it.
it has certainly been coming in layers for us.
what stopped me in my tacks the other day was hearing how progressive of a disease it is.
the other night, someone asked me, “so, tell me exactly how i am to pray for you and your family?”
i was confused, what did she mean?
she was referring to the cf and everything that surrounds it.
i fought back some tears of gratitude, as well as sadness… a question that some of the closest people haven’t asked, yet here was this person, reaching out.
then i remembered a fellow “cf mama” advised me that most people just don’t know what to say, so don’t hold it against the ones who don’t ask or say anything, but to confide honestly with the ones that do.
i proceeded to go into my 30-second-in-a-nut-shell description
“well you certainly don’t make it seem as big of deal as it is! gosh!”
people with CF have more mucus buildup in their membranes — their lungs, their pancreas and other organs.
in their lungs, this extra mucous traps and harbors bacteria, which, when around someone who is sick is very detrimental to someone with cf.
if you ever wonder why a cf parent or person is being uptight about getting sick, this is why. two people with cf are not to be in the same room without each wearing a mask, as they could pass bacteria to one another and they could become very ill.
chronic infections in someone with cf damage the lungs and eventually lead to respiratory failure.
in the pancreas, this extra mucous hinders nutrient absorption and affects the gastrointestinal tract. every time baby girl eats or drinks, which includes nursing, she needs to take enzymes.
the dosage and amount of pills she takes will increase as she grows. if her dosage is too high, constipation is common and bowel blockages are a definite concern.
watching baby girl’s stool has become the new normal around here:
“it was the perfect little shape and consistency!”
“hmm a little less formed and oily…”
if enzymes are not administered before she eats, she could get a belly ache.
right now, the median life span for someone with cf is approximately 40 years old — a vast increase from when it used to be in the early ages to teens.
in my online cf support groups, there are still young children and adults who have it severely and who are passing from this disease and it hits me.
we are BLESSED to not yet have any lung involvement with baby girl, and BLESSED that her involvement with this disease is considered mild by the medical professionals.
we hope and pray that this will always be the case.
if you pray, we would love your prayers for her, too.