I was diagnosed at 16 and will be 24 in April. <img src="i/expressions/face-icon-small-happy.gif" border="0"> I was treated as having asthma and allergies until I heard about CF and I asked my doctor if I might have it since I had a lot of symptoms that didn't fit with asthma and allergies (I'm a bit of a hypochondriac). I got a sweat test, and the rest is history.
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Late Diagnosis
- Thread starter PrincessReeRee
- Start date
I was diagnosed at 16 and will be 24 in April. <img src="i/expressions/face-icon-small-happy.gif" border="0"> I was treated as having asthma and allergies until I heard about CF and I asked my doctor if I might have it since I had a lot of symptoms that didn't fit with asthma and allergies (I'm a bit of a hypochondriac). I got a sweat test, and the rest is history.
JustDucky: I am now awaiting a medical board to discharge me from the military. I was told that even though my symptoms are very minor, CF is simply incompatible with active duty military service. There are concerns about extra sensitivity to training injuries, including heat stroke due to loss of salt in my sweat and thus being unable to maintain proper hydration. I wheeze when I run, but I've always pushed through (I made it through boot camp, after all) and passed my physical fitness tests with decent-to-high scores.
The treatments have been a bit overwhelming, as you say. I have the vest and nebulizer, both done twice a day. Creon with my meals and snacks. Various other vitamins and meds to balance everything out. My wife has been so supportive and made sure to get time off of her work to make it to my appointments with the CF team. She is incorporating all of the nutritional advice into my diet to see if I can possibly put on a bit more weight. I'm 5'6" and 130 lbs. Not tiny, but another 10-15 lbs would definitely help. I'm possibly the lightest Marine in my unit.
Anyway, the ride has just begun for me. I hope to take it through the ups and downs all the way to the end with no regrets. <img src="i/expressions/face-icon-small-smile.gif" border="0">
The treatments have been a bit overwhelming, as you say. I have the vest and nebulizer, both done twice a day. Creon with my meals and snacks. Various other vitamins and meds to balance everything out. My wife has been so supportive and made sure to get time off of her work to make it to my appointments with the CF team. She is incorporating all of the nutritional advice into my diet to see if I can possibly put on a bit more weight. I'm 5'6" and 130 lbs. Not tiny, but another 10-15 lbs would definitely help. I'm possibly the lightest Marine in my unit.
Anyway, the ride has just begun for me. I hope to take it through the ups and downs all the way to the end with no regrets. <img src="i/expressions/face-icon-small-smile.gif" border="0">
JustDucky: I am now awaiting a medical board to discharge me from the military. I was told that even though my symptoms are very minor, CF is simply incompatible with active duty military service. There are concerns about extra sensitivity to training injuries, including heat stroke due to loss of salt in my sweat and thus being unable to maintain proper hydration. I wheeze when I run, but I've always pushed through (I made it through boot camp, after all) and passed my physical fitness tests with decent-to-high scores.
The treatments have been a bit overwhelming, as you say. I have the vest and nebulizer, both done twice a day. Creon with my meals and snacks. Various other vitamins and meds to balance everything out. My wife has been so supportive and made sure to get time off of her work to make it to my appointments with the CF team. She is incorporating all of the nutritional advice into my diet to see if I can possibly put on a bit more weight. I'm 5'6" and 130 lbs. Not tiny, but another 10-15 lbs would definitely help. I'm possibly the lightest Marine in my unit.
Anyway, the ride has just begun for me. I hope to take it through the ups and downs all the way to the end with no regrets. <img src="i/expressions/face-icon-small-smile.gif" border="0">
The treatments have been a bit overwhelming, as you say. I have the vest and nebulizer, both done twice a day. Creon with my meals and snacks. Various other vitamins and meds to balance everything out. My wife has been so supportive and made sure to get time off of her work to make it to my appointments with the CF team. She is incorporating all of the nutritional advice into my diet to see if I can possibly put on a bit more weight. I'm 5'6" and 130 lbs. Not tiny, but another 10-15 lbs would definitely help. I'm possibly the lightest Marine in my unit.
Anyway, the ride has just begun for me. I hope to take it through the ups and downs all the way to the end with no regrets. <img src="i/expressions/face-icon-small-smile.gif" border="0">
LittleLab4CF
Super Moderator
I didn't read all the LATE DIAGNOSIS messages but after the latest information, prompted by the new CF drugs, I have been doing a slow burn. I was 51 when an accurate diagnosis was made. My age indicates I was not searching for new lungs at 15. In fact, I do have more mild pulmunary symptoms, although I have all the other typical CF symptoms. When I was a child most of the time I was sick from the sinuses on down to my skinny skin. Rotting teeth in spite of brushing 4 times a day, eating us out of house and home and still seeing daylight between my ribs, repeated ear lancing to exchange a controlled opening of ear drums for spontanious ruptures etc. etc.. I had wheezing, mild asthma, and then there was my belly. How many doctors treated 8yr old patients for ulcers, IBS, possibly Chrones, and consipation that only a dose of castor oil could cure. I sweated so much, my clothing rotted off my body. A leather belt or watch strap lasted a couple months. My hands did and do sweat so bad I etch my finger prints in all but knoble metals. Sweat condenced on my forehead forming white flakey crystals. When profuse sweat dripped into my eyes, it burned like acid. I told all this and more repeatedly to my doctors my entire life and found myself margionalized and often was sent to a psychiatrist. FINALLY at 50 an abdominal CT showed tiny amounts of calcification and my wife ran with it. A pancreatic function test was a new record for bad. I had a sweat test that catagorically was positive for my age, or an 8yr old. Genetic testing was the final nail in the CF diagnosis. A peer in high school told me I was an hypochondriac and fortunately I believed him. I spent my life as if I weren't sick, although 90 odd cases of pneumonia, pancreatic attacks, ulcers, sinusitus, and IBS needed attention. In retrospect I think it statistically impossible that some very smart doctors screwed up for 50 years. Now when I think of my obviousely super salty skin coupled with overwhelming symptoms, I wonder, what were they thinking? Now I have a lifetime of malnutrition and undiagnosed unbelievable pain to reflect on and be glad nothing was really wrong, it was all in my head.
LittleLab4CF
Super Moderator
I didn't read all the LATE DIAGNOSIS messages but after the latest information, prompted by the new CF drugs, I have been doing a slow burn. I was 51 when an accurate diagnosis was made. My age indicates I was not searching for new lungs at 15. In fact, I do have more mild pulmunary symptoms, although I have all the other typical CF symptoms. When I was a child most of the time I was sick from the sinuses on down to my skinny skin. Rotting teeth in spite of brushing 4 times a day, eating us out of house and home and still seeing daylight between my ribs, repeated ear lancing to exchange a controlled opening of ear drums for spontanious ruptures etc. etc.. I had wheezing, mild asthma, and then there was my belly. How many doctors treated 8yr old patients for ulcers, IBS, possibly Chrones, and consipation that only a dose of castor oil could cure. I sweated so much, my clothing rotted off my body. A leather belt or watch strap lasted a couple months. My hands did and do sweat so bad I etch my finger prints in all but knoble metals. Sweat condenced on my forehead forming white flakey crystals. When profuse sweat dripped into my eyes, it burned like acid. I told all this and more repeatedly to my doctors my entire life and found myself margionalized and often was sent to a psychiatrist. FINALLY at 50 an abdominal CT showed tiny amounts of calcification and my wife ran with it. A pancreatic function test was a new record for bad. I had a sweat test that catagorically was positive for my age, or an 8yr old. Genetic testing was the final nail in the CF diagnosis. A peer in high school told me I was an hypochondriac and fortunately I believed him. I spent my life as if I weren't sick, although 90 odd cases of pneumonia, pancreatic attacks, ulcers, sinusitus, and IBS needed attention. In retrospect I think it statistically impossible that some very smart doctors screwed up for 50 years. Now when I think of my obviousely super salty skin coupled with overwhelming symptoms, I wonder, what were they thinking? Now I have a lifetime of malnutrition and undiagnosed unbelievable pain to reflect on and be glad nothing was really wrong, it was all in my head.
M
momofmia
Guest
My daughter is being treated with CF meds although she has not been diagnosed. She has Bronchiectasis, chronic sinus infections, Fever and 2 rounds of antibiotics via PICC line. She has M470v and Poly T 7T/7T .I am told these variants do not cause CF they only cause chronic sinus infections. Anyone else.
Thank you
Thank you
M
momofmia
Guest
My daughter is being treated with CF meds although she has not been diagnosed. She has Bronchiectasis, chronic sinus infections, Fever and 2 rounds of antibiotics via PICC line. She has M470v and Poly T 7T/7T .I am told these variants do not cause CF they only cause chronic sinus infections. Anyone else.
Thank you
Thank you
P
paws
Guest
I was 20 when diagnosed. My story is so similar to others here. Early years I was diagnosed with allergies/colds/sinus issues. Was told it was probably the pollution making me asthmatic. I began having recurring bronchitis (with hemoptysis) and walking pneumonia during college. Finally a specialist did a bronch and ruled out tb before telling me what he suspected it was and sent me for a sweat test. I am pancreatic sufficient for the most part and have never been underweight. In fact I struggle to lose it!
P
paws
Guest
I was 20 when diagnosed. My story is so similar to others here. Early years I was diagnosed with allergies/colds/sinus issues. Was told it was probably the pollution making me asthmatic. I began having recurring bronchitis (with hemoptysis) and walking pneumonia during college. Finally a specialist did a bronch and ruled out tb before telling me what he suspected it was and sent me for a sweat test. I am pancreatic sufficient for the most part and have never been underweight. In fact I struggle to lose it!
U
urmysunshine54
Guest
Still Fighting - and how are you feeling? Are you still doing as much as you did when you were 34?
U
urmysunshine54
Guest
Still Fighting - and how are you feeling? Are you still doing as much as you did when you were 34?
my daughter dx may 2010, 8.5yrs old now 10.5yrs has had quite a few infections and on antibotics every couple of months, very difficult coming to terms with all this- disgusted with health system here - ireland , no screening for new borns (brought in july 2011) daughter born with blocked bowel so very angry she missed out on 8.5 yrs of treatment , suddenlly had to take creon for her bowel problems and attend clinics very couple of months . In 2004 attended a funeral of 14 yr old girl who died of cf and didn't know my own child had it. you certainly find out who your friends are in times of crisis and can only keep going and do your best. catherine
my daughter dx may 2010, 8.5yrs old now 10.5yrs has had quite a few infections and on antibotics every couple of months, very difficult coming to terms with all this- disgusted with health system here - ireland , no screening for new borns (brought in july 2011) daughter born with blocked bowel so very angry she missed out on 8.5 yrs of treatment , suddenlly had to take creon for her bowel problems and attend clinics very couple of months . In 2004 attended a funeral of 14 yr old girl who died of cf and didn't know my own child had it. you certainly find out who your friends are in times of crisis and can only keep going and do your best. catherine