Elderly Diagnosis--Is this possible?

[Debi1426]

My mother-in-law was recently hospitalized after a routine colonoscopy punctured her colon.  She had emergency surgery and while recovering in ICU, she wasn't able to maintain a 92 for oxygen.  The doctors did tests (blood, CT scans, etc).  She was just told she has cystic fibrosis.  Is this possible?  She is 64 years old, has 6 healthy adult children, is a life-long smoker who has only been hospitalized once about 15 years ago for polyps due to respiratory problems.  I have been researching this disease online and everything I read indicates this is a pediatric disease and it would be rare to be diagnosed this late in life and to have had 6 pregnancies.  We are very confused and distraught and don't know what to do..any advice would be appreciated.
Thanks

[JustmeinIowa]

Hi Sunny602, I am a 51 yr old, Mother of three. Twin boys and a girl.  When I was 18, my brother was diagnosed with CF.  The doctors asked that I be tested also.  They did the salt test and said I had CF too, but not as severe as my brother.  They gave us antibiotics, tetracycline, I think for 10 days each month and a brocodialator called something like aminophyllin to take each day.   After I moved away from home and the dirty air of the fuel oil furnace, I improved quite a bit and eventually quit taking the medicine and just got along pretty well except for a couple times a year when all my colds went to my lungs and I had to go get antibiotics.

Over the years my lung  function has decreased, Partly I think because my adult clogging class was discontinued, so I don't get the work out that I used to.  I went to the doctor today and when I told them I had been diagnosed with CF years ago, our small town family practicioner said that went against everything he had every heard about CF.  And he would have his Medical School intern do some research over the weekend.

My daughter was tested a few years ago when she was in the hospital for a reaction to sulpha medication.  The technician told us that he sees people come in that haven't been diagnosed until they are  60 years or older sometimes.  The local doctor Really couldn't believe That!

Am glad to say my daugter doesn't have CF.  I don't believe the twins do either, although they have not been tested, I don't see a reason to at this time.

My brother passed away at 44 years at the University of Nebraska in Omaha.  We live in southern Iowa. Omaha seemed to be the best CF care in this area.  

I am afraid If I take antibiotics too often, they will quit working, like they seemed to do for my brother.  I do not have any digestive problems like he did, just the thick, plentiful mucus that I struggle to get coughed up every day, and never seem to get over the infection completely.  I don't know anyone else that has CF now that my brother is gone.

Why do most everyone think that if you're a grown up, you can't have CF?
I have only confided it to a very few people in the 30 years I have lived here, guess they think I cough all the time from allergies or something.
When I have told someone, they look at you like you are an idiot, that you're too old to have CF and be alive,  I might as well have said I had Dutch Elm Disease or something equally as rediculous.

Would really be nice to know someone else in the same boat, so to speak.

Thanks for listening.  JustmeinIowa

[Sunny602]

Yes, it is possible to be diagnosed so late in life but not all too common. I was dx'd at 33 yrs old because of digestive problems and then they took a look at my lung issues as well. More than likely, she has mutations that are milder and cause a milder disease presentation and progression. Kudos on the team of doctors who looked beyond the norm to correctly diagnose her. I have heard of so many people who slipped through the cracks. Did the docs do a genetic and or sweat test to determine the CF? I think that it is amazing that she went so long in life without a diagnosis. But, if you look into her past, she probably had subtle symptoms such as lingering respiratory illnesses, a chronic cough, perhaps sinus problems etc. She should see a CF specialist for her care. Go to the CFF site to determine one nearest to your home.
As for myself, I am on daily chest physio with a device called the vest. It is essentially that, a vest attatched to a device that delivers high frequency pulsations that pounds my lungs. I do this twice a day minimally. I also take a slew of other meds such as inhaled tobramycin for my P. aeruginosa infection in my lungs, Pulmozyme which breaks down the DNA of my thick mucous, Xopenex to open up my airways, pancreatic enzymes to help replace those that my pancreas cannot secrete to aid in digestion, etc...
I know that this is overwhelming....you can email me anytime with questions. There is also a fantastic website that is stuffed with info, support forums, blogs, videos etc..It is called CysticFibrosis.com
I have been part of that forum for years and have found a wealth of knowledge there along with very supportive people. I would give it a try. Sunny