CFers over 40

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Rosie45

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LMG453</b></i>

I'm curious to know how many Cfer's there are over 40 on this website. Also, if you could share at what age you were diagnosed and what your PFT's are. My husband is 43. He was diagnosed at 9 months. His PFT's are 54.</end quote>

To give some of you a better outlook I am 61 years old with CF. When I was 59 my dr.said it was time to get evaluated for transplant. I traveled to Columbia in NYC and met anamazing group of caring physicians. I went through all the test. I am not listed yet but goevery three months for evaluation. Currently my FEV1 is about 30%. I have just spenttwo weeks in the hospital (over the Christmas holiday). I feel pretty good, use 02 at night only. and just started taken enzymes. I don't have a glucose problem. Wt. has been a problem and a J-tube was inserted for 6 months. I have had a nisson done three times butit is finally holding. The best thing you can do is keep a positive attitude and do what theytell you to do. I was not diagnosed till I was 45 years old. After being sick all my life andmisdiagnosed. I do have severe asthma.
 
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Rosie45

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LMG453</b></i>

I'm curious to know how many Cfer's there are over 40 on this website. Also, if you could share at what age you were diagnosed and what your PFT's are. My husband is 43. He was diagnosed at 9 months. His PFT's are 54.</end quote>

To give some of you a better outlook I am 61 years old with CF. When I was 59 my dr.said it was time to get evaluated for transplant. I traveled to Columbia in NYC and met anamazing group of caring physicians. I went through all the test. I am not listed yet but goevery three months for evaluation. Currently my FEV1 is about 30%. I have just spenttwo weeks in the hospital (over the Christmas holiday). I feel pretty good, use 02 at night only. and just started taken enzymes. I don't have a glucose problem. Wt. has been a problem and a J-tube was inserted for 6 months. I have had a nisson done three times butit is finally holding. The best thing you can do is keep a positive attitude and do what theytell you to do. I was not diagnosed till I was 45 years old. After being sick all my life andmisdiagnosed. I do have severe asthma.
 
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cpiccini

New member
I am 40 years old, diagnosed at 32, PFT's in the 37-40% range and I also have three mutations of the gene. My husband and I have been married for 10 years and adopted a son in 2010. I work full-time, 40-50 hours per week, as a Talent Development Manager. I struggle with MRSA, Pseudo and Stafh infections, but am pancreatic sufficient. I've run 5 1/2 marathons and do my best to do yoga as often as possible.
 
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cpiccini

New member
I am 40 years old, diagnosed at 32, PFT's in the 37-40% range and I also have three mutations of the gene. My husband and I have been married for 10 years and adopted a son in 2010. I work full-time, 40-50 hours per week, as a Talent Development Manager. I struggle with MRSA, Pseudo and Stafh infections, but am pancreatic sufficient. I've run 5 1/2 marathons and do my best to do yoga as often as possible.
 
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CheriD

New member
i turned 44 in oct 2011, diagnosed at age 4, failure to thrive. ironically, now my doc tells me i need to lose some weight at my whopping 135 (5'2"). (the first doc i had at my current care center wanted me to go on an all mcdonalds diet to gain weight. i weighed 115, 6 years ago, coming off treatment for m. abcessus. ) for those of you who feel like you should be able to breath better than you are (diaphragm stuck, belly seizes, or ribs stiff), see if you can see a soft tissue physical therapist. apparently my entire rib cage was stuck in an inhalation position for years and i didnt even know it. after working with my therapist for almost 3 years, i dont know how i survived so long without her! (like most of us, just stubborn i guess) i have scar tissue from liver resection that doesnt help matters any. now that the CF arthritis has kicked in she is even more important as part of my care team. fev1 in low 60's, fvc in mid 90's. <br>
 
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CheriD

New member
i turned 44 in oct 2011, diagnosed at age 4, failure to thrive. ironically, now my doc tells me i need to lose some weight at my whopping 135 (5'2"). (the first doc i had at my current care center wanted me to go on an all mcdonalds diet to gain weight. i weighed 115, 6 years ago, coming off treatment for m. abcessus. ) for those of you who feel like you should be able to breath better than you are (diaphragm stuck, belly seizes, or ribs stiff), see if you can see a soft tissue physical therapist. apparently my entire rib cage was stuck in an inhalation position for years and i didnt even know it. after working with my therapist for almost 3 years, i dont know how i survived so long without her! (like most of us, just stubborn i guess) i have scar tissue from liver resection that doesnt help matters any. now that the CF arthritis has kicked in she is even more important as part of my care team. fev1 in low 60's, fvc in mid 90's. <br>
 
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Daisymae1997

New member
I am 40, diagnosed at 5, just popped back into the 90s after being in the 70s and 80s for three years. I was terminated from a 15 year job 5 years @ 1 dept and 10 years in another dept for being inconsistent. I suppose that was due to me declining health and three deaths in our family in three years. I now work 24 hrs / week. I applied for disability and was denied. CFF legal is working on the appeal. They tell me it would have been better had I contacted them before I applied. I highly recommend you do that. Their fee is 25% of whatever back (retroactive) disability payments you get. 800-622-0385 or cflegal@cff.org
 
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Daisymae1997

New member
I am 40, diagnosed at 5, just popped back into the 90s after being in the 70s and 80s for three years. I was terminated from a 15 year job 5 years @ 1 dept and 10 years in another dept for being inconsistent. I suppose that was due to me declining health and three deaths in our family in three years. I now work 24 hrs / week. I applied for disability and was denied. CFF legal is working on the appeal. They tell me it would have been better had I contacted them before I applied. I highly recommend you do that. Their fee is 25% of whatever back (retroactive) disability payments you get. 800-622-0385 or cflegal@cff.org
 
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