Anyone diagnosed after 30
- Thread starter Dowling
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gunelle
Guest
I was diagnosed at 32. Been sick my whole life, but not sick enough to be diagnosed with CF. Had colds, flu, runny nose my whole life. What lead to diagnosis was that I kept getting pnemonia, had suspicious cultures and wanted to know what was wrong with me. Hope this helps.
I was diagnosed at 44 following a pneumonia. Had always gotten bronchitis once or twice a winter but was only hospitalized once when I was 26. Could be my mutations are not that severe but I think that I stayed healthy because I was always running or swimming. Looking back, I am surprised that our pediatrician did not sweat test me but I don't spend much time wondering why he didn't even when I missed 30 days of school in first grade. My husband and I have four kids, none of whom have cf and I suspect if I had been diagnosed earlier that our family would have been smaller and my life would have been more limited. Hope that you are doing well this summer. ( I am 51 now, and have 2 R117H and R560T)
I was diagnosed at 34. I had been treated for asthma my entire life. Leading up to my diagnosis, I started to get lung infections that the antibiotics were no longer treating. After trying many things, I was referred to a respirologist. They tested me for CF (genetically) and it came back positive. The infection that they couldn't treat was pseudomonas, which cleared up once treated with the proper medication.
I am pancreatic sufficient, which made it easy to explain my lung symptoms as asthma. In addition, I show up as negative with sweat tests.
I am pancreatic sufficient, which made it easy to explain my lung symptoms as asthma. In addition, I show up as negative with sweat tests.
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kgfrompa
Guest
I was 50
I was diagnosed when I was 50 I am 57 now always a little sick as a child but not so sick that I was in the hospital I always had problems with food and digestion Had Gall bladder removed at 19 years and gall stones kidney stones,But mostly lung infections and bad inmune system
I was diagnosed when I was 50 I am 57 now always a little sick as a child but not so sick that I was in the hospital I always had problems with food and digestion Had Gall bladder removed at 19 years and gall stones kidney stones,But mostly lung infections and bad inmune system
I was diagnosed at age 41. I was pretty healthy when I was younger. Maybe a croupy kind of cough that my mother always thought sounded funny, but we never gave it a thought. I was very active in sports and exercise back then and that is still the case today. For a good decade before I was diagnosed I would cough up a bunch of junk. I would cough up a little blood here and there too. Thought it was just allergies or something. In 2005, I had a bad case of pneumonia and was diagnosed with bronchiectasis. They tested me for cf carrier and I was positive. But they never did the full mutation panel testing after that! My pulmonologist at that time dropped the ball. There were other conditions that I shared with him that looking back should have said to him , "this person probably has cf". He should have done more investigation. All he wanted to do is CT scans and cut out the bad portions of my lung. I said, I'm out of here. I continued struggling coughing up junk and having terrific pains in my lungs every now and then and coughing up a little blood here and there. I would get sinus infections somewhat frequently. I would take some antibiotics every so often and things would improve for a bit. But things continued to get worse. Finally, a few months before I was diagnosed I had a very bad bout of hemoptysis. A lot of blood. That scared me and I needed to look into things further. It just so happens that I have a dear friend of mine that has cf (I consider her my sister in every sense of the word). She suggested that I go to her cf clinic and get checked out. After a sweat test, it showed I had cf. They then did the full mutation panel testing which revealed my two mutations. Now I'm in good hands with the right doctor at my cf clinic.
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stephen
Guest
Diagnosed at 63.
Always coughed and ran low grade fevers - but sweat tests were always negative.
Diagnosed with Bronchiectasis at 49. It was attributed to a “Celia” problem.
Bleeding got progressively worse. Went to National Jewish in Denver in 2005 for a consultation about having a portion of a lung removed. They diagnosed CF with genetic testing.
Have been much better since because the diagnosis lead to access of drugs and treatment regimen for CF, thank G-d.
Always coughed and ran low grade fevers - but sweat tests were always negative.
Diagnosed with Bronchiectasis at 49. It was attributed to a “Celia” problem.
Bleeding got progressively worse. Went to National Jewish in Denver in 2005 for a consultation about having a portion of a lung removed. They diagnosed CF with genetic testing.
Have been much better since because the diagnosis lead to access of drugs and treatment regimen for CF, thank G-d.
S
sdeuber
Guest
I was diagnosed when I was 36 years old. It was such a relief as I finally knew what was "wrong" with me. looking back I had not the typically CF symptoms but many "indicators" such as appendicitis, gall stones, nasal polyps and the ever re-occurring colds and coughs. when I was 36 I tried to get pregnant and the doc said " not even the best sperm can get thru that mucus wall" which was the main indicator for a CF condition. We did a gene test and here it was - one mild and one more aggressive gene. I was a classic case for "adult cf" as it never showed at birth or during my early childhood/teenage years.
Over the years sports helped me to stay healthy overall.
Since I was diagnosed I am in better health than ever - very proactive, I listen to my body more than every (when it calls for rest, I do rest) and I am very diligent with my meds and inhalations.
And, no, I never got pregnant but we adopted two wonderful boys who are the love of my life (plus my very supportive husband
Over the years sports helped me to stay healthy overall.
Since I was diagnosed I am in better health than ever - very proactive, I listen to my body more than every (when it calls for rest, I do rest) and I am very diligent with my meds and inhalations.
And, no, I never got pregnant but we adopted two wonderful boys who are the love of my life (plus my very supportive husband
I was diagnosed last year at age 34 due to infertility. I was frequently ill growing up and always under-sized and under-weight for my age. I struggled with pneumonia, sinusitis, and bronchitis, along with digestive issues of gas and constipation. Strangely, I have been much healthier as an adult and many of my symptoms are less severe. I guess I learned how to take care of my problems even though I didn't know anything about CF.
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rheamc
Guest
I was diagnosed at 43 after 6 episodes of pancreatitis within a 6 month period. Finally had genetic testing and positive sweat test. Always have had sinus issues, thought it was allergies my whole life! I saw a specialist in Boston and found out that a lot of people get diagnosed as adults. Never knew.
diagnosed 35 now 37
I was diagnosed at 35 because my kids were tested and each had one genetic mutation for CF. My doctor put this with my chronic cough, pneumonia's, sinus infections and tested me. I gave each one genetic mutation. I feel so much better after treatment.
As for how I stayed healthy did swim team then followed with running from middle school through high knowing I wanted to go into the military. My lungs got worse with 16 weeks of bed rest with my second child. I thank God every day for the wonderful life I have had.
I was diagnosed at 35 because my kids were tested and each had one genetic mutation for CF. My doctor put this with my chronic cough, pneumonia's, sinus infections and tested me. I gave each one genetic mutation. I feel so much better after treatment.
As for how I stayed healthy did swim team then followed with running from middle school through high knowing I wanted to go into the military. My lungs got worse with 16 weeks of bed rest with my second child. I thank God every day for the wonderful life I have had.
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Red9928
Guest
I was diagnosed at age 40, after a lifetime of chronic infections and pneumonias that were blamed on asthma and allergies. Certainly they didn't help my pulmonary symptoms but also didn't explain the bronchiectasis I developed along with pseudomonas, and multiple additional bacterial infections. My sweat tests were negative but genetic testing confirmed df508 and D1152H. Tobi and pulmozyme have helped tremendously! The diagnosis has been helpful, but I agree had I had it prior to having kids I might have been reluctant to have a family. I have twins conceived via IVF.
Simba15
Member
I was sick as a child: constant strep throat, ear infections, sinaus infections, tonsilities, edanoids were HUGE, bronchitis 2 x a year like clock work. Appendectomy at age 18. Tonsilectomy and adendoidectomy at age 17. As I got older my bronchitis got worse and worse until I was having 2 sinus infections a month. Had sinus surgery. Still had em. Sinus infection to bronhcitis in one days time. constantly sick. Diagnosed age 50. I was discounted by doctor's my who life who said, "you're a healthy girl. Nothing is wrong with you." was a lond distance runner in my 20's, professioal body builder in my 20's and martial artist. In my 30's I jogged. In my 40s and 50s I power walk.
I was diagnosed at 58. Always had pneumonia/bronchitis every winter. Always run down and sick as a child. Couldn't hold my breath underwater--camp counselors were annoyed I couldn't hold my breath long enough to dive comfortably. But, I played hockey and lacrosse on school--great times. Missed senior year hockey due to pneumonia. At age 49 I started having intestinal problems, diagnosed as pancreatic insufficiency. I teach elementary school, so I work in a germ factory. Then diagnosed with bronchiectasis. Finally a doctor put it all together. Three of my four children have symptoms, as do two brothers, as do many cousins, nieces and nephews. Super mild case, I am just careful, and take my meds the first sign of illness. Sweat test was neg, but that only accounts for the worst cases. I haven't had a full panel done yet. Am functioning much better now, just to know the truth!!
Thanks! My daughter was diagnosed shortly after birth last year and since then we had the family tested and my MOM has been diagnosed. Strange but true. My mom is 59 and never been treated for CF until this month. Still a lil shocked I guess. They are using grant money to do tests on her to see why she's lived this long without treatment ????
I was diagnosed at age 45 after years and years of lung infections, two hospitalizations for pancreatitis, repeated sinus infection etc., starting as a child. After visiting a doctor in Ohio during a lung infection, he suspected lung cancer, after seeing a dark spot on my chest x-ray which turned out to be a mucus plug. I was then told that I had bronchiastas, and that my lungs were those of an eighty year old man.
Several years later, I became very sick again and went to my primary care physician, who in turn sent me to a lung specialist. The specialist ordered a CT scan, and I can still remember barely having enough wind to walk from my car to the hospital elevators.
After viewing the CT scan results, I had a consultation with the doctor, and he agreed that I had broncheastasis and in general, very bad lungs. In casual conversation he asked me about my family, and I mentioned that after several marriages I had no children. I mentioned that in years prior I had been to the Cleveland clinic to find out why and discovered that my vas deferens had never fully formed, and due to that, was unable to have children, via natural means.
He excused himself and when he returned he showed me a photo in a medical book side by side with my CT scan. They looked remarkably similar. The photo in the book was a cystic fibrosis lung. He told me that he suspected I had CF and ordered the sweat test. He explained that CF was considered "terminal", and I was basically in shock at that point. This was in the mid 90s, and there were not many people being diagnosed at my age, apparently.
I went home and looked up cystic fibrosis online. I was alone and literally in tears after reading that the average life expectancy was 30 years. (the information available online was much different then) I went for the sweat test, we which was positive, and several weeks later, had my first appointment at Atlanta's Emory clinic cf clinic. At the time, there was no adult cf center and everything was designed for children, from the reading materials to the little chairs, and toys.
I saw the doctor and had a DNA test, and began a regimen of meds which I still do to this day. I will turn 57 next month although I still have recurring lung infections, pancreatitis, and cf related diabetes, but I am still here obviously.
I lost my job of 16 years in November 2011, and have struggled with keeping health insurance, getting affordable meds and so forth, as many of you have.
Well, sorry for the lengthy post, but that's my story and it feels good to tell it. I've been reading posts here for quite some time and never posted. Thanks for "listening".
Several years later, I became very sick again and went to my primary care physician, who in turn sent me to a lung specialist. The specialist ordered a CT scan, and I can still remember barely having enough wind to walk from my car to the hospital elevators.
After viewing the CT scan results, I had a consultation with the doctor, and he agreed that I had broncheastasis and in general, very bad lungs. In casual conversation he asked me about my family, and I mentioned that after several marriages I had no children. I mentioned that in years prior I had been to the Cleveland clinic to find out why and discovered that my vas deferens had never fully formed, and due to that, was unable to have children, via natural means.
He excused himself and when he returned he showed me a photo in a medical book side by side with my CT scan. They looked remarkably similar. The photo in the book was a cystic fibrosis lung. He told me that he suspected I had CF and ordered the sweat test. He explained that CF was considered "terminal", and I was basically in shock at that point. This was in the mid 90s, and there were not many people being diagnosed at my age, apparently.
I went home and looked up cystic fibrosis online. I was alone and literally in tears after reading that the average life expectancy was 30 years. (the information available online was much different then) I went for the sweat test, we which was positive, and several weeks later, had my first appointment at Atlanta's Emory clinic cf clinic. At the time, there was no adult cf center and everything was designed for children, from the reading materials to the little chairs, and toys.
I saw the doctor and had a DNA test, and began a regimen of meds which I still do to this day. I will turn 57 next month although I still have recurring lung infections, pancreatitis, and cf related diabetes, but I am still here obviously.
I lost my job of 16 years in November 2011, and have struggled with keeping health insurance, getting affordable meds and so forth, as many of you have.
Well, sorry for the lengthy post, but that's my story and it feels good to tell it. I've been reading posts here for quite some time and never posted. Thanks for "listening".
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welshwitch
Guest
WOW thanks all for sharing your stories! Proof that CF is no longer just a "child's disease". We are all adults, grandparents, and elders alike. I'm 33 and plan on living until the rest of you old folks. I was diagnosed at 9 months thanks to an adroit doctor, but I am sure it could have happened much later.
Cheers, and keep on living.
Cheers, and keep on living.
kittenface
Member
I was diagnosed at 37. I'm now 48. My gene combination is D508 and R711H.. I had lung issues all my life. Went through genetic counselling when I was 37 and pregnant. I have 2 healthily non CF girls now 6 and 10. My husband was tested and he doesn't carry the CF gene. Both my girls are carriers. Stared physio last year. See my CF clinic every 3 months for a check up. Lori
Diagnosed at 38. Lifelong symptoms. Lung surgery at 6 yrs to remove what they thought was a disease isolated to the right middle lobe. Continuously at Dr.s with "Asthma and Allergy". Had a positive sweat chloride, but no gene identified at age 22. My gene is very rare, so I don't think they knew about it, yet. L208W 1 copy. Currently, trying to identify 2nd gene thru DNA sequencing. I have no pancreatic involvement.
i was diognosed at 41, g551d/r117h,found out because i am infertile,looking back i
had nasal polyps at age 21, had heat exhaustion a few times(i never could tolerate hot weather)
got a lung infection while on vacation in mexico,and have some mucas in the back of my throat
a few times a day, otherwise i have been in good health my life, actually i have always been on the
slightly overweight side.
had nasal polyps at age 21, had heat exhaustion a few times(i never could tolerate hot weather)
got a lung infection while on vacation in mexico,and have some mucas in the back of my throat
a few times a day, otherwise i have been in good health my life, actually i have always been on the
slightly overweight side.