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For the people diagnosed with CF in their 30s or later
- Thread starter anonymous
- Start date
It's my Dad's story, not mine, but here is what I know.... He was diagnosed when he was in his late 30s. My Mom took him to the Mayo Clinic to get a definitive diagnosis for his chronic lung infection/sinus problems. No one in his local area was able to figure him out. His sweat tests came back positive. Of course his diagnosis came as a shock to my parents as well as the doctors. Certainly an oddity for the late 1970s (and today too) to find an undiagnosed CFer close to 40! I don't know about a bronch. I have been meaning to send off to Madison to get his mutations, that is where he was tested when genetic testing became available. If I am able to get my hands on his genetic tests results, I will post them.
JennifersHope
New member
I was dx at 29. I had a real hard time getting dx, then a real hard time believing them. I don't think I still fully believe them and it is a few years later. I keep waiting for them to tell me they made a mistake, or that it is just bad asthma or something.
Anyway, I think I was misdiagnoised for so many years because I didn't have health insurance and I had to be seen in a clinic where I saw a different doctor every week. It was a horrible experience for me.. all of my early 20s. I was so sick, no one knew why and the only thing they ever tested me for was TB and HIV. I can't tell you how many times they tested me for this. Over and Over.. I guess because I didn't have insurance they deemed me as high risk for those things and couldn't see past that.
Finally, at age 29 I had health insurance, and after having pneumonia every year of my life since I was born, my adrenal glands failed me.. ( non CF related) but I got real sick, lost my mind just about, and ended up in the hospital and my life fell completly apart... still not the same but better... anyway.. two months after that. my pancreas decided to become insufficient and I got sent to a great GI dr in New York City,, ( Katie Courics husbands doctor) I went into the office was doing my usual coughing,etc and he kept asking me about my cough. I remember getting annoyed with him because I wanted to focus on my horrible stomach pain.. Anyway, a few questions later, and he told my step mom and I that he bets his life I have CF.. Blah blah blah sweat tests later.. Here I am.
I have very a typical CF. Very little lung damage with way to frequent exacerbations. I never had a bronch and I will never get one.. I don 't think they are necesarry for me to get, since I am not having any trouble really.
Anyway that is the long version sorry,
Jennifer
Anyway, I think I was misdiagnoised for so many years because I didn't have health insurance and I had to be seen in a clinic where I saw a different doctor every week. It was a horrible experience for me.. all of my early 20s. I was so sick, no one knew why and the only thing they ever tested me for was TB and HIV. I can't tell you how many times they tested me for this. Over and Over.. I guess because I didn't have insurance they deemed me as high risk for those things and couldn't see past that.
Finally, at age 29 I had health insurance, and after having pneumonia every year of my life since I was born, my adrenal glands failed me.. ( non CF related) but I got real sick, lost my mind just about, and ended up in the hospital and my life fell completly apart... still not the same but better... anyway.. two months after that. my pancreas decided to become insufficient and I got sent to a great GI dr in New York City,, ( Katie Courics husbands doctor) I went into the office was doing my usual coughing,etc and he kept asking me about my cough. I remember getting annoyed with him because I wanted to focus on my horrible stomach pain.. Anyway, a few questions later, and he told my step mom and I that he bets his life I have CF.. Blah blah blah sweat tests later.. Here I am.
I have very a typical CF. Very little lung damage with way to frequent exacerbations. I never had a bronch and I will never get one.. I don 't think they are necesarry for me to get, since I am not having any trouble really.
Anyway that is the long version sorry,
Jennifer
fugikitten2087
New member
This one woman at my clinic told me her story well two of them did and I think I will share them.
One was diagnosed at 45 when she went in for intestenal surgery, the Dr. noticed that the bowls looked differentand had her tested. She is now 55 and still hasnt had a CF hospital stay.
The other was diagnosed at 43, she was going in the get her lungs checked out for cancer because she's a smoker and they noticed a difference in the patterens. So they tested her and she has it. She still smokes..0.o
One was diagnosed at 45 when she went in for intestenal surgery, the Dr. noticed that the bowls looked differentand had her tested. She is now 55 and still hasnt had a CF hospital stay.
The other was diagnosed at 43, she was going in the get her lungs checked out for cancer because she's a smoker and they noticed a difference in the patterens. So they tested her and she has it. She still smokes..0.o
JennifersHope
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
how old are you, jen?</end quote></div>
I am 33 years old.
how old are you, jen?</end quote></div>
I am 33 years old.
I'm 29 and I'm starting to wonder if I might have mild CF. I have a first cousin who has CF, but I've never done any research on it until now, I just got curious recently. It's entirely possible that I'm a hypochondriac, but some of the symptoms sound like things I've been dealing with due to a mystery illness that's been plaguing me for close to 3 years. I won't get into the details because the big thing that jumped out at me is the salty sweat. I've noticed for years that whenever I get really sweaty, salt builds up in my eyebrows. I've lived in a really hot climate for 6 years. When I'm able to cool off, the salt crystallizes and you can actually see the white crystals in the hairs. I've even wiped it off and tasted it and it's like a salt lick. The sweat is really salty before it dries too. So is it normal and I'm a hypochondriac, or should I look into it? Any advice and opinions are welcome.
wallflower
New member
I was diagnosed when I was 2. My early years were on an army base (Colorado), and my mom had to really fight to find out what was wrong with me. As a baby, I was always sick, and the doctors kept telling her that it was just a virus (how many on you know of a virus that lasts over a year).
Finally I was diagnosed, and when we moved back to Wisconsin, we went to the CF clinic in MN. I don't know if the doctors there ever gave my mom a hard time about me, I hope not.
I did have my genes tested when I was a kid, but I don't remember what they are. I was told that they didn't make a difference in my treatment, so I never cared too much about it. I think one of them had a G in it, and the other one was unknown? Somewhere I have the letter - I'll have to try and dig it up.
I have never had a bronch, so no data there.
Finally I was diagnosed, and when we moved back to Wisconsin, we went to the CF clinic in MN. I don't know if the doctors there ever gave my mom a hard time about me, I hope not.
I did have my genes tested when I was a kid, but I don't remember what they are. I was told that they didn't make a difference in my treatment, so I never cared too much about it. I think one of them had a G in it, and the other one was unknown? Somewhere I have the letter - I'll have to try and dig it up.
I have never had a bronch, so no data there.
Hi. I was diagnosed just before my 50th birthday. I am the youngest of my parents' five children; my mother always wondered why I was so sick and the others were fine. I had an allergy doctor for over 30 years - got the shots and lots of asthma medications (didn't help). Meanwhile I was treated for "bronchitis" twice a year since I was 11 or 12. As a consequence I developed chemical sensitivity and first saw a doctor for a reaction I had to carpets in 1999 - the CF diagnosis came in 2003 when my "bronchitis" persisted for most of a year. I said to the doctor "What's in there?" which prompted my first sputum sample. And, as you all know, what was in there was pseudomonas - I saw a great doctor in Billings MT (140 miles east of where I live in Bozeman) who ordered a sweat test and genetics testing. The sweat test was 120 (both times). My mutations are DF508 and 1336K. I am so grateful to be getting the proper care for my CF. My mother died the month before I became so sick - the last time I saw her she said "I wonder what I did that made you so sick" - I had a lot of intestinal pain in my first few weeks so the doctors (in 1953 when bottle feeding was encouraged over breast feeding) ... told my (very experienced) mother that it was probably due to her milk and that she should stop breast feeding me (alas!). So that's my story. Never been bronched.
Momtana
Momtana