Adults diagnosed in their 50's?

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Melissa75

Administrator
Do any of you mind sharing your sweat test numbers, also if your mutations were found in the 23 or 95 panel tests?
My sweat test was negative, not borderline, as a baby and again as an adult, and I don't have a single mutation in the 95 panel. Yet I still wonder if I should ask my pulmo for the Ambry test or even pay for it out of pocket some day. If some of you have two uncommon mutations or comparably low sweat test numbers, it might influence my thoughts on this. Thanks!
 
M

Melissa75

Administrator
Do any of you mind sharing your sweat test numbers, also if your mutations were found in the 23 or 95 panel tests?
My sweat test was negative, not borderline, as a baby and again as an adult, and I don't have a single mutation in the 95 panel. Yet I still wonder if I should ask my pulmo for the Ambry test or even pay for it out of pocket some day. If some of you have two uncommon mutations or comparably low sweat test numbers, it might influence my thoughts on this. Thanks!
 
S

stephen

Guest
I had at least 3 sweat tests as an adult. All were negative - and not borderline. When I went to National Jewish, their first round of genetic tests revealed a single mutation. They then did expanded testing and discovered a second mutation. (Note: There are well over 1000 identified mutations.) Therefore, from my experiences, expanded genetic testing is advisable.

I also was diagnosed with MAC well before CF was diagnosed. Fortunately, 18 months of Biaxon and Myambutol got rid of it, and the fevers and cough were relieved for almost three years following the treatment. Now, thank G-d, with the CF diagnosis the Cayston, Pulmozyme, Hypertonic Saline, Zithromax, and the Vest are doing their job.

Despite the chronic infections, bleeding, and decreased lung function, I was able to work as an electrical engineer until just a few months ago.

Stephen
70, Diagnosed at 63, FEV1 of 47% - Otherwise feel great, thank G-d.
 
S

stephen

Guest
I had at least 3 sweat tests as an adult. All were negative - and not borderline. When I went to National Jewish, their first round of genetic tests revealed a single mutation. They then did expanded testing and discovered a second mutation. (Note: There are well over 1000 identified mutations.) Therefore, from my experiences, expanded genetic testing is advisable.

I also was diagnosed with MAC well before CF was diagnosed. Fortunately, 18 months of Biaxon and Myambutol got rid of it, and the fevers and cough were relieved for almost three years following the treatment. Now, thank G-d, with the CF diagnosis the Cayston, Pulmozyme, Hypertonic Saline, Zithromax, and the Vest are doing their job.

Despite the chronic infections, bleeding, and decreased lung function, I was able to work as an electrical engineer until just a few months ago.

Stephen
70, Diagnosed at 63, FEV1 of 47% - Otherwise feel great, thank G-d.
 
M

Melissa75

Administrator
Stephen,
Thanks for replying. I also see the value in testing and a CF dx--three of the treatments/meds you listed are not covered by insurance for non-CF bronchiectasis (vest, cayston & pulmozyme). I went to NJ three yrs ago, but was only given the 95-panel test, I think because my bacteria were boring and my PFTs above average. Three yrs later, I've pseudomonas, have lost--at least--15 points of FEV1 and my BMI is a hanging-onto-normal-by-a-thread 18.8. I'm hoping my local pulmos will get Ambry covered for me at my next appt, and it's high time for another AFB culture. If not, I may pay out of pocket, because if I happened to have CF I'd save money in the long run. Not to mention get more aggressive treatment.
Thanks again for replying. Huge congrats on clearing the MAC for three years! And what a great career. I'm guessing my 10 yr old, who can put together anything and understands how things work far better than I do, might go into engineering of some sort.
:)
 
M

Melissa75

Administrator
Stephen,
Thanks for replying. I also see the value in testing and a CF dx--three of the treatments/meds you listed are not covered by insurance for non-CF bronchiectasis (vest, cayston & pulmozyme). I went to NJ three yrs ago, but was only given the 95-panel test, I think because my bacteria were boring and my PFTs above average. Three yrs later, I've pseudomonas, have lost--at least--15 points of FEV1 and my BMI is a hanging-onto-normal-by-a-thread 18.8. I'm hoping my local pulmos will get Ambry covered for me at my next appt, and it's high time for another AFB culture. If not, I may pay out of pocket, because if I happened to have CF I'd save money in the long run. Not to mention get more aggressive treatment.
Thanks again for replying. Huge congrats on clearing the MAC for three years! And what a great career. I'm guessing my 10 yr old, who can put together anything and understands how things work far better than I do, might go into engineering of some sort.
:)
 
P

Printer

Active member
Melissa: In 1995 in a search of 250 known mutations they found the Delta F508 only. In a full almost 1900 known mutations done in 2011 they found my second mutation (see below). I would strongly recommend that a FULL SEQUENCING be done. I don't remember my sweat tests from 1987 but they both were "borderline positive". Bill
 
P

Printer

Active member
Melissa: In 1995 in a search of 250 known mutations they found the Delta F508 only. In a full almost 1900 known mutations done in 2011 they found my second mutation (see below). I would strongly recommend that a FULL SEQUENCING be done. I don't remember my sweat tests from 1987 but they both were "borderline positive". Bill
 
K

kgfrompa

Guest
I was diagnosed at the age of 50 after years of collasped lungs and alot like Bea50 they said it was bronchieatasis and on antibitics all the time Doctors would not give them to me and i would go from one er to another er with in a 50 mile range,Begging for antibitics I ended up at the NIH and they suggested I be tested for CF my sweat test was neg the doc said he about fell off his chair when it came back on my ambry Genetic test I was amplified for Cf.I look good but have to cll the doctor in the morning for coughing up blood and my lungs hurt in my back the pain is unbearable.Welcome and thanks to each and every one for teaching me through what you all share there are some very smart CF on this site,
 
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kgfrompa

Guest
I was diagnosed at the age of 50 after years of collasped lungs and alot like Bea50 they said it was bronchieatasis and on antibitics all the time Doctors would not give them to me and i would go from one er to another er with in a 50 mile range,Begging for antibitics I ended up at the NIH and they suggested I be tested for CF my sweat test was neg the doc said he about fell off his chair when it came back on my ambry Genetic test I was amplified for Cf.I look good but have to cll the doctor in the morning for coughing up blood and my lungs hurt in my back the pain is unbearable.Welcome and thanks to each and every one for teaching me through what you all share there are some very smart CF on this site,
 
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kmaried

New member
Hi!

I'm not a late diagnosis, and I'm only 29. BUT, I just wanted to say that there is a lot of hope with proper treatment you will not experience the constant lung and sinus infections you have had for the previous 3 years. Hypertonic Saline particularly, helped me immensely (of course, everyone is differrent).

I also wanted to say not to give too much thought to the life expectancy. You've made it to your 50's working full time WITHOUT proper CF treatment! That's amazing. I know some people will refute this, but your CF is clearly a different animal than the CF other people have who need lung transplants in their teens and 20's WITH proper treatment. So, I really wouldn't fret. There is also someone in my CF clinic who was diagnosed in his 70's!!

Good luck and I hope CF meds make your many future years much more enjoyable!

Kris
 
K

kmaried

New member
Hi!

I'm not a late diagnosis, and I'm only 29. BUT, I just wanted to say that there is a lot of hope with proper treatment you will not experience the constant lung and sinus infections you have had for the previous 3 years. Hypertonic Saline particularly, helped me immensely (of course, everyone is differrent).

I also wanted to say not to give too much thought to the life expectancy. You've made it to your 50's working full time WITHOUT proper CF treatment! That's amazing. I know some people will refute this, but your CF is clearly a different animal than the CF other people have who need lung transplants in their teens and 20's WITH proper treatment. So, I really wouldn't fret. There is also someone in my CF clinic who was diagnosed in his 70's!!

Good luck and I hope CF meds make your many future years much more enjoyable!

Kris
 
P

Printer

Active member
Kris:

I recently changed CF Centers. There I'm only one of four CF patients in their 70's. There will be a study soon based upon our age and our CF. The theory is that we have a natural amunity, in out lungs, that reduces the effect of asper and ps.

If an amunity exists, the theory is it can be chemically reproduced and used as a treatment.

We will see how much of a "different animal" that we are.

Bill
 
P

Printer

Active member
Kris:

I recently changed CF Centers. There I'm only one of four CF patients in their 70's. There will be a study soon based upon our age and our CF. The theory is that we have a natural amunity, in out lungs, that reduces the effect of asper and ps.

If an amunity exists, the theory is it can be chemically reproduced and used as a treatment.

We will see how much of a "different animal" that we are.

Bill
 
M

Melissa75

Administrator
That immunity study sounds interesting. I'm also fascinated by links between TB and arthritis, and hormones and MAC.

Kgfrompa, I can just imagine the quests for antibiotics you went through. I'm glad you are getting proper treatment now.
 
M

Melissa75

Administrator
That immunity study sounds interesting. I'm also fascinated by links between TB and arthritis, and hormones and MAC.

Kgfrompa, I can just imagine the quests for antibiotics you went through. I'm glad you are getting proper treatment now.
 
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urmysunshine54

Guest
Hi Kris - Thanks so much for your kind words of encouragement!
 
U

urmysunshine54

Guest
Hi Kris - Thanks so much for your kind words of encouragement!
 
1

1woodswoman

Guest
I was also recently dx'd in my 50's, w/2 boderline sweat tests at #32, & 1 identified CF gene. Going to an adult CF Ctr that is community oriented & talks to my local doc's has been very helpful, along w/the right CF tx for my lungs & pancreas. I live 6+ hrs away from the closest CF adult ctr, so good communication has been essential w/me & my local doc's (who can be quite understanding but need guidance from the CF Ctr). It is still taking awhile to adjust to the complexities of this new dx, but my body makes a lot more sense now.
I love to travel, & was wondering how people have worked out traveling w/all the tx's, & being away from your doc's, & getting meds that are usually mailed?
Also, has anyone had the nasal test for CF, instead of the traditional sweat test?
 
1

1woodswoman

Guest
I was also recently dx'd in my 50's, w/2 boderline sweat tests at #32, & 1 identified CF gene. Going to an adult CF Ctr that is community oriented & talks to my local doc's has been very helpful, along w/the right CF tx for my lungs & pancreas. I live 6+ hrs away from the closest CF adult ctr, so good communication has been essential w/me & my local doc's (who can be quite understanding but need guidance from the CF Ctr). It is still taking awhile to adjust to the complexities of this new dx, but my body makes a lot more sense now.
I love to travel, & was wondering how people have worked out traveling w/all the tx's, & being away from your doc's, & getting meds that are usually mailed?
Also, has anyone had the nasal test for CF, instead of the traditional sweat test?
 
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