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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


My heart goes out to everyone with CF and family/relatives/cargivers of People with CF

I don't have his father's/father's side of family history to go on, trying to track him down, left when he was an infant might make things easier too

I am sorry to sound like I am complaining or whining I am just lost and frustated at our medical insurance, oh yeah they pay they bills too!

My husband has excessive mucus, sometimes to the point that he spends 5-10 minutes in the morning trying to clear it out contanstly spitting out mucus all day long, every minute of the day, somtimes to the point he almost vomits, low spirometery 45-40,%declining raplidy, dignosed with asthma at an earlier age, that is his current diagnosis. frequent lung inefections, pneumnoia, colds, bronchitis, sinusitis, he was lucky and his mother to even make it to the next grade in school and her to keep her job because he was sick so much. now he coughs up blood occasionally, not a smoker, he in on Advair and uses a full albuterol canister 2 weeks sometimes once a week.... He is currently in the hospital for Pancreatitis again, he suffers from it off and on, the doctors have ruled out gallstones, he does not drink. He may have had Pancreatitis has a child but it may have been not has severe? My husband is in so much pain not to mention his asthma and mucus

I have brought the connection of Pancreatitis, excessive mucus and possible misdiagnosed asthma this up to his primary care doctor he said "cystic fibrosis is only in infants" not in adults ok so I finally got my husband to an allergiest for his asthma, he was at least willing to listen and look at my husbands medical chart but I may not have the "full medical chart". Possible HMO not doing test for costs?? I work for this same HMO They are giving me the run around and every time I try to change his primary care doctor they keep changing it back to his old one, not to mention my supervisors are contstanly on me about my attendance and tardniness because they know I need the medical benefits, haven't told anyone at work only my bosses know, it's bad but a good company, yes I have FMLA in place,

I have pulled up so many good sources and information that says their are mild forms or later diagnoses of CF in life, I need to know, we have a 2 1/2 daughter, to make the best for her life, if he does have CF, it is possible she may have it, although she has no symptoms yet just coughs, I need to make some great memories for her because I don't know how long he may have HE WILL BE 28 this year I am trying to stay positive and upbeat

How much is a sweat test?
Gene test?

Do we go thru customer service and complain?
keep switching doctors?
ask for referral to pulmonlogist or genetic testing?
HMO, Kaiser will cover this test I know they will,

As anyone else ran into problems with medical staff/providers/doctors saying "CF is only for children and infants"

PLEASE HELP...............someone, advice





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