Diagnosed at 39 years old!

[mjp317]

Hi,
I am a 39 year old with 2 healthy (so far as I know) children. I was diagnosed with CF the other day. Much to everyone's surprise! I have been feeling horrible for 3 years and finally they figured it out. Started a few inhaled medicines today and the dry throat made me vomit in my car (lovely right)!

Not sure what to do - have a great Dr. at Tufts in Boston.

Advice?

 

[mjp317]

Hi,
I am a 39 year old with 2 healthy (so far as I know) children. I was diagnosed with CF the other day. Much to everyone's surprise! I have been feeling horrible for 3 years and finally they figured it out. Started a few inhaled medicines today and the dry throat made me vomit in my car (lovely right)!

Not sure what to do - have a great Dr. at Tufts in Boston.

Advice?

 

[mjp317]

Hi,
<br />I am a 39 year old with 2 healthy (so far as I know) children. I was diagnosed with CF the other day. Much to everyone's surprise! I have been feeling horrible for 3 years and finally they figured it out. Started a few inhaled medicines today and the dry throat made me vomit in my car (lovely right)!
<br />
<br />Not sure what to do - have a great Dr. at Tufts in Boston.
<br />
<br />Advice?

 

[colinmaydahl]

Welcome to the club! Find out what meds work for You, everybody here is different on what meds, how often, all of that stuff. Exercise, eat well, be happy! What about You? Are You a man or a woman? what kind of symptoms are You having? feel free to email me colinmaydahl@gmail.com

 

[colinmaydahl]

Welcome to the club! Find out what meds work for You, everybody here is different on what meds, how often, all of that stuff. Exercise, eat well, be happy! What about You? Are You a man or a woman? what kind of symptoms are You having? feel free to email me colinmaydahl@gmail.com

 

[colinmaydahl]

Welcome to the club! Find out what meds work for You, everybody here is different on what meds, how often, all of that stuff. Exercise, eat well, be happy! What about You? Are You a man or a woman? what kind of symptoms are You having? feel free to email me colinmaydahl@gmail.com

 

[colinmaydahl]

Welcome to the club! Find out what meds work for You, everybody here is different on what meds, how often, all of that stuff. Exercise, eat well, be happy! What about You? Are You a man or a woman? what kind of symptoms are You having? feel free to email me colinmaydahl@gmail.com

Colin 28m/CF

 

[colinmaydahl]

Welcome to the club! Find out what meds work for You, everybody here is different on what meds, how often, all of that stuff. Exercise, eat well, be happy! What about You? Are You a man or a woman? what kind of symptoms are You having? feel free to email me colinmaydahl@gmail.com

Colin 28m/CF

 

[colinmaydahl]

Welcome to the club! Find out what meds work for You, everybody here is different on what meds, how often, all of that stuff. Exercise, eat well, be happy! What about You? Are You a man or a woman? what kind of symptoms are You having? feel free to email me colinmaydahl@gmail.com
<br />
<br />Colin 28m/CF

 

[mjp317]

Well - I am female and led an active life which included hiking, sports, and about 3 years ago I got sick with a cough that never went away. Had sinus surgery a year ago - had open lung biopsy in August and finally one of my Dr's pushed for Sweat Test (tested at 39) and she pushed more for genetic testing and the rest is history.

I was on Cipro since August (which did not please my new CF Dr) and now have Tobi and Pulmozyne.

I am happy to finally have an answer (outside of being called crazy) but need to embrace what it is. THe few people I have told seem shocked. My parents (and I was adopted) are not taking it well.

I am so happy to have found this site - good reading things even though most seem to be for younger folks.

 

[mjp317]

Well - I am female and led an active life which included hiking, sports, and about 3 years ago I got sick with a cough that never went away. Had sinus surgery a year ago - had open lung biopsy in August and finally one of my Dr's pushed for Sweat Test (tested at 39) and she pushed more for genetic testing and the rest is history.

I was on Cipro since August (which did not please my new CF Dr) and now have Tobi and Pulmozyne.

I am happy to finally have an answer (outside of being called crazy) but need to embrace what it is. THe few people I have told seem shocked. My parents (and I was adopted) are not taking it well.

I am so happy to have found this site - good reading things even though most seem to be for younger folks.

 

[mjp317]

Well - I am female and led an active life which included hiking, sports, and about 3 years ago I got sick with a cough that never went away. Had sinus surgery a year ago - had open lung biopsy in August and finally one of my Dr's pushed for Sweat Test (tested at 39) and she pushed more for genetic testing and the rest is history.
<br />
<br />I was on Cipro since August (which did not please my new CF Dr) and now have Tobi and Pulmozyne.
<br />
<br />I am happy to finally have an answer (outside of being called crazy) but need to embrace what it is. THe few people I have told seem shocked. My parents (and I was adopted) are not taking it well.
<br />
<br />I am so happy to have found this site - good reading things even though most seem to be for younger folks.

 

[Printer]

Hi:

I'm male 70 years old and I hope that you get your self to the only CF Center in Boston (MGH). I was dx at 47. I say this because I was dx dy Lahey and while there were good, they were not good enough. There are so FEW doctors who can treat adult CF patients.

Having said that now that you have been dx you will get treatment and your life will be much better.

Reply if you like.

Bill

 

[Printer]

Hi:

I'm male 70 years old and I hope that you get your self to the only CF Center in Boston (MGH). I was dx at 47. I say this because I was dx dy Lahey and while there were good, they were not good enough. There are so FEW doctors who can treat adult CF patients.

Having said that now that you have been dx you will get treatment and your life will be much better.

Reply if you like.

Bill

 

[Printer]

Hi:
<br />
<br />I'm male 70 years old and I hope that you get your self to the only CF Center in Boston (MGH). I was dx at 47. I say this because I was dx dy Lahey and while there were good, they were not good enough. There are so FEW doctors who can treat adult CF patients.
<br />
<br />Having said that now that you have been dx you will get treatment and your life will be much better.
<br />
<br />Reply if you like.
<br />
<br />Bill

 

[Brad]

Welcome to the Club, that No one wants to be a member of..

Some of the Meds will cause issues, You will get used to them.

The first time I nebbed mucolmyst I gagged and threw up, fact I did
for a while. first time I was 9 ?, been using ever since.

I met a pair of lady's who were twins that had just gotten DX.
They were 56 at the time.
Some docs seem to miss the signs. My Mother was pushing the
Docs to test me a few years before they finally did.

Good Luck to Ya. Keep active and do your Nebs and Hydrate Hydrate Hydrate !

 

[Brad]

Welcome to the Club, that No one wants to be a member of..

Some of the Meds will cause issues, You will get used to them.

The first time I nebbed mucolmyst I gagged and threw up, fact I did
for a while. first time I was 9 ?, been using ever since.

I met a pair of lady's who were twins that had just gotten DX.
They were 56 at the time.
Some docs seem to miss the signs. My Mother was pushing the
Docs to test me a few years before they finally did.

Good Luck to Ya. Keep active and do your Nebs and Hydrate Hydrate Hydrate !

 

[Brad]

Welcome to the Club, that No one wants to be a member of..
<br />
<br /> Some of the Meds will cause issues, You will get used to them.
<br />
<br /> The first time I nebbed mucolmyst I gagged and threw up, fact I did
<br /> for a while. first time I was 9 ?, been using ever since.
<br />
<br /> I met a pair of lady's who were twins that had just gotten DX.
<br /> They were 56 at the time.
<br /> Some docs seem to miss the signs. My Mother was pushing the
<br /> Docs to test me a few years before they finally did.
<br />
<br /> Good Luck to Ya. Keep active and do your Nebs and Hydrate Hydrate Hydrate !

 

[mjp317]

Reading posts from the "older and wiser" folks gives me a lot of hope. While being seen currently at Tufts, I will likely switch over to MGH - but wanted to get things started as quickly as I could and that is where I was to start. I do have hope - and am not as upset as some think I should be - to me - an answer is better than not knowing. Knowledge is the key...

Any tips you can pass on are great!

 

[mjp317]

Reading posts from the "older and wiser" folks gives me a lot of hope. While being seen currently at Tufts, I will likely switch over to MGH - but wanted to get things started as quickly as I could and that is where I was to start. I do have hope - and am not as upset as some think I should be - to me - an answer is better than not knowing. Knowledge is the key...

Any tips you can pass on are great!