Diagnosed as an adult

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sunshine10

New member
i dont quite know how to go about this so i will do my best. my husband has been having much difficulty since jan. he has asthma and copd and was just told he has osteoarthritis from the base of his neck to the bottom of his spine. the reason i am writing here is because for six years he has been in and out of the er for asthma attacks and in jan he was hospitalized for pneumonia just to be back in the hospital a month later with double pneumonia and a fungal infection which was found out through a bronchoscopy. with our fifth child just born three weeks ago i was told her newborn screening needed to be repeated because her elevated irt. my husband had one family member die a long time ago from cf and i just found out his cousin is a carrier. bottom line should i get my husband tested for cf and are all these symptoms going undiagnosed as cf? just needing some clarification.

thanks
 
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sunshine10

New member
i dont quite know how to go about this so i will do my best. my husband has been having much difficulty since jan. he has asthma and copd and was just told he has osteoarthritis from the base of his neck to the bottom of his spine. the reason i am writing here is because for six years he has been in and out of the er for asthma attacks and in jan he was hospitalized for pneumonia just to be back in the hospital a month later with double pneumonia and a fungal infection which was found out through a bronchoscopy. with our fifth child just born three weeks ago i was told her newborn screening needed to be repeated because her elevated irt. my husband had one family member die a long time ago from cf and i just found out his cousin is a carrier. bottom line should i get my husband tested for cf and are all these symptoms going undiagnosed as cf? just needing some clarification.

thanks
 
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sunshine10

New member
Update, my husband came back from infectious disease dr and pulmonologist today. He's not any better and it looks like still has fluid may have to go back into hospital to clean out lungs because "pneumonia" is back says he pulmonologist. Then she said that cf is usually found out by toddler age but she would check him because of recent findings stated above. Do any of you "experts" (I say that because you all have it) think it could be cf or just regular pneumonia staying in him for four months?

Thanks
 
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sunshine10

New member
Update, my husband came back from infectious disease dr and pulmonologist today. He's not any better and it looks like still has fluid may have to go back into hospital to clean out lungs because "pneumonia" is back says he pulmonologist. Then she said that cf is usually found out by toddler age but she would check him because of recent findings stated above. Do any of you "experts" (I say that because you all have it) think it could be cf or just regular pneumonia staying in him for four months?

Thanks
 
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semperficf

New member
I was diagnosed with CF at age 33 via genetic profile at the request of a Dr. at the VAMC in SF. While growing up I had respiratory and sinus issues that were attributed to allergies. I exhibited digestive issues but was never able to pinpoint a cause. I served 8 years in the Marine Corps with frequent bouts of bronchitis, lingering colds, sinus infections, persistent productive cough, etc. About 5 years after being discharged, my fiancé was concerned that I was coughing so much and always had a productive cough in the morning, so I agreed to go to the clinic for testing. Initially I was given a TB test (negative), sputum (non TB-MAC), and first told I had a bronchiectasis. Since this was at a university clinic, I was referred to a local hospital and eventually ended up at the VAMC where the diagnosis was made.

I am told I am an interesting case to the VA because they rarely see CF cases and frequently struggle to get the correct medications , but fortunately they are usually affiliated with a university medical school and I have been lucky to live in cities where the UMC's had an adult CF clinic.

Does anyone here know of any other military veterans with CF (diagnosed while in the military or as a veteran)? I would be interested to learn of success / problems in dealing with VA co-managed care and other veteran related issues.

Jason - 39 y/o (DF508/D1152H)
 
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semperficf

New member
I was diagnosed with CF at age 33 via genetic profile at the request of a Dr. at the VAMC in SF. While growing up I had respiratory and sinus issues that were attributed to allergies. I exhibited digestive issues but was never able to pinpoint a cause. I served 8 years in the Marine Corps with frequent bouts of bronchitis, lingering colds, sinus infections, persistent productive cough, etc. About 5 years after being discharged, my fiancé was concerned that I was coughing so much and always had a productive cough in the morning, so I agreed to go to the clinic for testing. Initially I was given a TB test (negative), sputum (non TB-MAC), and first told I had a bronchiectasis. Since this was at a university clinic, I was referred to a local hospital and eventually ended up at the VAMC where the diagnosis was made.

I am told I am an interesting case to the VA because they rarely see CF cases and frequently struggle to get the correct medications , but fortunately they are usually affiliated with a university medical school and I have been lucky to live in cities where the UMC's had an adult CF clinic.

Does anyone here know of any other military veterans with CF (diagnosed while in the military or as a veteran)? I would be interested to learn of success / problems in dealing with VA co-managed care and other veteran related issues.

Jason - 39 y/o (DF508/D1152H)
 
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Printer

Active member
JennifersHope:

I am 72 and dx at age 47. My CF is as "typical" as it gets. More Gastro issues than lung issues but I meet ALL of the criteria for CF. As for "showing signs" of CF. I was showing signs back in the 1st Grade (1946) about 12 years before the invention of the SWEAT TEST.

Just because people are being dx in 50's 60's, dosen't mean that they are a typical, it could mean that they had INFERIOR MEDICAL CARE.

Bill
 
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Printer

Active member
JennifersHope:

I am 72 and dx at age 47. My CF is as "typical" as it gets. More Gastro issues than lung issues but I meet ALL of the criteria for CF. As for "showing signs" of CF. I was showing signs back in the 1st Grade (1946) about 12 years before the invention of the SWEAT TEST.

Just because people are being dx in 50's 60's, dosen't mean that they are a typical, it could mean that they had INFERIOR MEDICAL CARE.

Bill
 
P

Printer

Active member
SemperfiCF:

An active duty Marine, screen name AZMAVETH, posted on 3/21/2012 (in adult) "MY DIAGNOSIS AT AGE 34"

Bill
 
P

Printer

Active member
SemperfiCF:

An active duty Marine, screen name AZMAVETH, posted on 3/21/2012 (in adult) "MY DIAGNOSIS AT AGE 34"

Bill
 
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