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diagnosed as adults
- Thread starter anonymous
- Start date
I was diagnosed this year...kind of by accident. I was hospitalized for a 4 lobe pneumonia, and when they cultured my sputum, it came back as Staph. They kept trying to get me to "admit" I had thrown up and swallowed it down my lungs or something while I was sleeping, or better yet, now that I have read all the medical records from when I was in the hospital, they suspected that I was an alcoholic who had aspirated into my lungs and infected myself. LOL. Anyway, one of the docs, after reviewing my vitamins levels, noted I was particularly deficient in A, B, D, E, K and my electrolytes were all out of whack...so he suggested the standard CF blood test. That only showed one mutation of the DF508, so they said I was only a carrier.
My mom works for University Hospital Internal Medicine Training Program and is friends with one of the docs at the CF clinic at National Jewish in Denver (Dr. Saavedra) and had been telling her all along of my hospitalization and latest CF results. Dr. Saavedra told my mom...you know, it really sounds like your daughter has CF...why don't you have her come to the clinic for some further testing besides just the standard one....two sweat test later and it was confirmed about my having CF. Total fluke for getting diagnosed. If my mom didn't know Dr. Saavedra, we'd still be wondering what's wrong with me.
I have had symptoms all my life. Been to the ER multiple times for severe stomach pain, only to be told it was all stress. Have had problems keeping weight on. Have had pneumonia muliple times, been hospitalized for pneumonia several times. Chronic sinus problems, chronically sick, blah, blah, blah....just was not fortunate enough until recently to come across a doctor who was able to connect all of the dots.
My mom works for University Hospital Internal Medicine Training Program and is friends with one of the docs at the CF clinic at National Jewish in Denver (Dr. Saavedra) and had been telling her all along of my hospitalization and latest CF results. Dr. Saavedra told my mom...you know, it really sounds like your daughter has CF...why don't you have her come to the clinic for some further testing besides just the standard one....two sweat test later and it was confirmed about my having CF. Total fluke for getting diagnosed. If my mom didn't know Dr. Saavedra, we'd still be wondering what's wrong with me.
I have had symptoms all my life. Been to the ER multiple times for severe stomach pain, only to be told it was all stress. Have had problems keeping weight on. Have had pneumonia muliple times, been hospitalized for pneumonia several times. Chronic sinus problems, chronically sick, blah, blah, blah....just was not fortunate enough until recently to come across a doctor who was able to connect all of the dots.
BaylorCrew07
New member
I was diagnosed earlier this year at age 20. I was tested for CF as an infant because I kept losing weight and was classified as failure to thrive. The first sweat test was not at a CF center and came back positive, then they sent me to a CF center where the sweat tests kept coming back inconclusive. They did further testing w/ feces, etc. and decided that I probably did not have CF (I haven't had digestive problems until recently, so that's why it didn't show up on there).
I've had tons of sinus problems my whole life, and 2 sinus surgeries before being diangosed w/ CF. I've also had pneumonia a few times, severe constipation and awful stomach pains that landed me in the ER 3 or 4 times. My asthma/allergy doctor recommended that I get another sweat test done at age 14, but for whatever reason my mom decided against it. After never really getting over an episode of bronchitis and coughing up nasty green stuff for over a year I started reseraching CF and found out that some people were diagnosed later than others and called my doctor and asked her to order a sweat test. Sure enough, sweat test was positive (just barely over the inconclusive line though - 62) and genetic tests confirmed that I have CF.
Debra
21 w/CF
I've had tons of sinus problems my whole life, and 2 sinus surgeries before being diangosed w/ CF. I've also had pneumonia a few times, severe constipation and awful stomach pains that landed me in the ER 3 or 4 times. My asthma/allergy doctor recommended that I get another sweat test done at age 14, but for whatever reason my mom decided against it. After never really getting over an episode of bronchitis and coughing up nasty green stuff for over a year I started reseraching CF and found out that some people were diagnosed later than others and called my doctor and asked her to order a sweat test. Sure enough, sweat test was positive (just barely over the inconclusive line though - 62) and genetic tests confirmed that I have CF.
Debra
21 w/CF
JennifersHope
New member
I was diagnoised right before I turned 30 years old. I was sick as a child with a ton of pneumonias. bronchitisis and unknown pulmonary diseases. I was in the hospital starting at about two weeks old with different lung issues. Most of my teens and into my early adult hood.. I just had bad episodes of pneumonia and infilitrates (once I was told it was cancerous.. got to love medical clinics) but I was always able to be managed on oral IVs up until the last few years....
The way I was dx was really quite traumatic for me.. I had been in and out of the hospital for many months.. (mostly in) because about the same time I was dx with Addison's disease.. which almost killed me.... and the things I went though before I was dx with that I would do anything to forget
anyway... I just started getting my head on straight from the Addison's and started taking the right meds for that.... was trying to go back to school, and get used to living with my parents.. that I had not lived with since I was 16 and I guess that is when my pancreas really started to not work.. I was malabsorbing my food, I had horrible stomach pains and was doubled over most of the time....
Anyway, I ended up going to a dr, in NYC for my stomach pain.... and of course while I was there I was coughing my head off and on three antibiotics for the cough I had... Anyway, the dr kept trying to talk about my cough and I kept getting mad saying " please ignore my cough I have had it my whole life, please fix my stomach." That is when he put everything together.. Gave me enzymes to take and said he thinks I have CF..he said if the enzymes help that will prove his theory and he will order more tests.... My step mom and I fell off our chairs laughing...but I wouldn't take the enzymes for two weeks.. I just stared at them... Finally I took them. my stomach felt better, I would stop taking them my stomach would hurt.. I was sure it was just a coincidence that it was helping..
Anyway. a few sweat tests later.. and walaaaaaaaaaaaaaaaaaaaaaaaaaaaa CF and Addison's. I won the prize... both rare diseases. One more rare then the other...Addison's is 1 in about 160,000 ppl Cf well you know the stats on that.
I do have a mild form of CF meaning that I have minimal to no intrinisic lung disease, I am dependant on enzymes to digest my food. I am on IVS at this point every three to four months, but no damage really stays with me. More so my problem is the combo of having the two diseases...is really what is going to hurt me the most....Every time I am sick I need more steroids, which in turn makes me more immuno-compromised, makes me get more sickness which makes me need more steroids.. and I think I have bellyached enough about what the steroids have done to my life...
Sometimes ppl say to me that the only Cfers that they ever heard of are the Cfers that they remember in med school ( remember I work with lots of drs) and they were alway coughing stuff up and died before they were 18....So many ppl don't know that more and more ppl are being dx as adults and that their are so many different mutations.... I try to make ppl aware about adults being dx, but it is frustrating to me.. and I really don't care to talk to ppl about it.. so sometimes I still end up saying.. I have a cold or asthma.. or whatever
That is my story....
Jennifer
The way I was dx was really quite traumatic for me.. I had been in and out of the hospital for many months.. (mostly in) because about the same time I was dx with Addison's disease.. which almost killed me.... and the things I went though before I was dx with that I would do anything to forget
anyway... I just started getting my head on straight from the Addison's and started taking the right meds for that.... was trying to go back to school, and get used to living with my parents.. that I had not lived with since I was 16 and I guess that is when my pancreas really started to not work.. I was malabsorbing my food, I had horrible stomach pains and was doubled over most of the time....
Anyway, I ended up going to a dr, in NYC for my stomach pain.... and of course while I was there I was coughing my head off and on three antibiotics for the cough I had... Anyway, the dr kept trying to talk about my cough and I kept getting mad saying " please ignore my cough I have had it my whole life, please fix my stomach." That is when he put everything together.. Gave me enzymes to take and said he thinks I have CF..he said if the enzymes help that will prove his theory and he will order more tests.... My step mom and I fell off our chairs laughing...but I wouldn't take the enzymes for two weeks.. I just stared at them... Finally I took them. my stomach felt better, I would stop taking them my stomach would hurt.. I was sure it was just a coincidence that it was helping..
Anyway. a few sweat tests later.. and walaaaaaaaaaaaaaaaaaaaaaaaaaaaa CF and Addison's. I won the prize... both rare diseases. One more rare then the other...Addison's is 1 in about 160,000 ppl Cf well you know the stats on that.
I do have a mild form of CF meaning that I have minimal to no intrinisic lung disease, I am dependant on enzymes to digest my food. I am on IVS at this point every three to four months, but no damage really stays with me. More so my problem is the combo of having the two diseases...is really what is going to hurt me the most....Every time I am sick I need more steroids, which in turn makes me more immuno-compromised, makes me get more sickness which makes me need more steroids.. and I think I have bellyached enough about what the steroids have done to my life...
Sometimes ppl say to me that the only Cfers that they ever heard of are the Cfers that they remember in med school ( remember I work with lots of drs) and they were alway coughing stuff up and died before they were 18....So many ppl don't know that more and more ppl are being dx as adults and that their are so many different mutations.... I try to make ppl aware about adults being dx, but it is frustrating to me.. and I really don't care to talk to ppl about it.. so sometimes I still end up saying.. I have a cold or asthma.. or whatever
That is my story....
Jennifer
JennifersHope
New member
OOPs that was as novel I wrote.. uggg.. I should have used that energy to write a paper for school...