fallenarches
New member
She has an appointment on the 25th at the University of MN, earliest we could get.
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Late Diagnosis
- Thread starter PrincessReeRee
- Start date
fallenarches
New member
She has an appointment on the 25th at the University of MN, earliest we could get.
fallenarches
New member
As for my question, based on your signature, you have pancreatic issues and I am assuming digestive issues as well. Are you underweight or where you before diagnosis?<div><br></div><div>We have some friends who have a daughter that has CF diagnosed at infancy who has severe digestive issues to the point of anorexia because she was in so much pain when she ate. She is much better with that now (this was about 10 years ago) after getting a feeding tube and whatever other treatments she has now. Our DD has nothing like that at all other than frequent, loose stools. She does have a history of bronchitis, pneumonia, asthma and they discovered nasal polyps just this week-thus the reason for the referral for CF testing.</div>
fallenarches
New member
As for my question, based on your signature, you havepancreaticissues and I am assuming digestive issues as well. Are you underweight or where you before diagnosis?<br>We have some friends who have a daughter that has CF diagnosed at infancy who has severe digestive issues to the point of anorexia because she was in so much pain when she ate. She is much better with that now (this was about 10 years ago) after getting a feeding tube and whatever other treatments she has now. Our DD has nothing like that at all other than frequent, loose stools. She does have a history of bronchitis,pneumonia, asthma and they discovered nasal polyps just this week-thus the reason for the referral for CF testing.
fallenarches
New member
As for my question, based on your signature, you havepancreaticissues and I am assuming digestive issues as well. Are you underweight or where you before diagnosis?<br>We have some friends who have a daughter that has CF diagnosed at infancy who has severe digestive issues to the point of anorexia because she was in so much pain when she ate. She is much better with that now (this was about 10 years ago) after getting a feeding tube and whatever other treatments she has now. Our DD has nothing like that at all other than frequent, loose stools. She does have a history of bronchitis,pneumonia, asthma and they discovered nasal polyps just this week-thus the reason for the referral for CF testing.
I was also diagnosed later than usual. It was always "asthma" or "chronic bronchitis". And digestive/weight issues were assumed to be related to poor nutrition and stress (When I was 4?). By the time I was in middle school I was on 80mg of prednisone daily for my "asthma" and had been for months. My PFTs were in the 40's, I had had so many fractures (from the 80 mg of steriods), and I was severely underweight. Finally I was hospitalized Shands and met the doc that saved my life. I just stopped seeing him and had to move to adult care since I am 20. He still emails me studies and new information on CF.
I was also diagnosed later than usual. It was always "asthma" or "chronic bronchitis". And digestive/weight issues were assumed to be related to poor nutrition and stress (When I was 4?). By the time I was in middle school I was on 80mg of prednisone daily for my "asthma" and had been for months. My PFTs were in the 40's, I had had so many fractures (from the 80 mg of steriods), and I was severely underweight. Finally I was hospitalized Shands and met the doc that saved my life. I just stopped seeing him and had to move to adult care since I am 20. He still emails me studies and new information on CF.
Wow azmaveth.....what is going to happen as far as being in the Marines now that you have a CF dx? I was 33 when I was dx'd (am 40 now) and remember the shock and feeling overwhelmed from all of the new treatments that I now had to do (vest, pulmozyme, Creon etc). This is a great forum to vent and ask questions, I have been a member since my dx (I think lol)...several years at least and just love it. So many of my questions were answered as I always thought CF was a child's disease,,not something that gets diagnosed in adulthood.
Hang in there and welcome,
Jenn 40 w/CF
Hang in there and welcome,
Jenn 40 w/CF
Wow azmaveth.....what is going to happen as far as being in the Marines now that you have a CF dx? I was 33 when I was dx'd (am 40 now) and remember the shock and feeling overwhelmed from all of the new treatments that I now had to do (vest, pulmozyme, Creon etc). This is a great forum to vent and ask questions, I have been a member since my dx (I think lol)...several years at least and just love it. So many of my questions were answered as I always thought CF was a child's disease,,not something that gets diagnosed in adulthood.
Hang in there and welcome,
Jenn 40 w/CF
Hang in there and welcome,
Jenn 40 w/CF
My daughter was just diagnosed last Friday. She is 29 and 3 months pregnant. There were indications now that should of led the way to testing, but I see on this forum a lot of people were misdiagnosed. I am new to this site and have many questions. Does anybody have ABPA also. Does anybody have any information on OHSU in Portland, Oregon. That is where she is going next week. Baby will be tested also. Not sure if her boyfriend is a carrier. She has a 7 year old daughter that does not have CF, but different father. I am also looking for help with SSI disability for insurance purposes. She unemployed right now and on State of Washington medical insurance. This is all so overwhelming and I am scared for my daughter. I had a baby myself that died at 2 1/2 months of SIDS and it was horrifying. She is all I have and my grandaughter. The mutations that she came back with were 9551D/R352Q. That is all they told us so far. Supposedly she has a mild case of it and was told by genetic counselor that she would not get any worse. Anybody know anything about that. My name is Mary and my daughter is Crystal. We live in Vancouver, Washington.
My daughter was just diagnosed last Friday. She is 29 and 3 months pregnant. There were indications now that should of led the way to testing, but I see on this forum a lot of people were misdiagnosed. I am new to this site and have many questions. Does anybody have ABPA also. Does anybody have any information on OHSU in Portland, Oregon. That is where she is going next week. Baby will be tested also. Not sure if her boyfriend is a carrier. She has a 7 year old daughter that does not have CF, but different father. I am also looking for help with SSI disability for insurance purposes. She unemployed right now and on State of Washington medical insurance. This is all so overwhelming and I am scared for my daughter. I had a baby myself that died at 2 1/2 months of SIDS and it was horrifying. She is all I have and my grandaughter. The mutations that she came back with were 9551D/R352Q. That is all they told us so far. Supposedly she has a mild case of it and was told by genetic counselor that she would not get any worse. Anybody know anything about that. My name is Mary and my daughter is Crystal. We live in Vancouver, Washington.
K
katethekid
Guest
I was dx with CF at 15 years old. My doctors had tried to diagnose me with CF since I was 2 after severe sinus problems and lung problems started to develop. I had inconclusive sweat chloride tests at age 3 and 7, but had a positive test at 15 when my doc at the mayo clinic sent me for another one. My lungs improved greatly and even exceeded a healthy persons capacity while I was swimming competitively through late elementary school, JHS, and HS. Then in my 10th grade year my pancreas started to not work properly. I have severe problems with my bile ducts and have had a 6 pancreatic stint procedures, whipple, puestow, and a partial pancreatectomy. After all these surgeries I couldn't keep up with swimming. Ever since then my lungs have been getting increasingly worse. I still consider myself VERY lucky as I am still here at age 25 <img src="i/expressions/face-icon-small-smile.gif" border="0"> and the docs said I wouldn't make it into my teens HA! I love proving doctors wrong, it's fun. I'm glad to see others had late a diagnosis as well, makes me feel like I'm not such a wierdo after all <img src="i/expressions/face-icon-small-smile.gif" border="0">
K
katethekid
Guest
I was dx with CF at 15 years old. My doctors had tried to diagnose me with CF since I was 2 after severe sinus problems and lung problems started to develop. I had inconclusive sweat chloride tests at age 3 and 7, but had a positive test at 15 when my doc at the mayo clinic sent me for another one. My lungs improved greatly and even exceeded a healthy persons capacity while I was swimming competitively through late elementary school, JHS, and HS. Then in my 10th grade year my pancreas started to not work properly. I have severe problems with my bile ducts and have had a 6 pancreatic stint procedures, whipple, puestow, and a partial pancreatectomy. After all these surgeries I couldn't keep up with swimming. Ever since then my lungs have been getting increasingly worse. I still consider myself VERY lucky as I am still here at age 25 <img src="i/expressions/face-icon-small-smile.gif" border="0"> and the docs said I wouldn't make it into my teens HA! I love proving doctors wrong, it's fun. I'm glad to see others had late a diagnosis as well, makes me feel like I'm not such a wierdo after all <img src="i/expressions/face-icon-small-smile.gif" border="0">