For Adults dx late in life - how do you feel?

[beleache]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>urmysunshine54</b></i> I really appreciate you all taking the time to share...and find you so positive, despite all of the health issues you've been dealing with. I truly feel like Joni does, the support and encouragement from these forums have been a godsend. I hope you don't mind me asking more questions. Just was wondering how do you make plans? I know good friends and family understand if you need to cancel getting together, but what about attending an out of town wedding, buying tickets to an event, etc. Do you find you've put your life 'on hold'? Do you just plan things last minute, or do you have a run of a month or two, where you're pretty confident you'll wake up feeling good? Thanks again, Susan[/q
Hi Susan,
Plans can be a bit tricky. I was supposed to have over 30 ppl at my house this past Christmas Eve but I was in the hospital <img src="i/expressions/face-icon-small-sad.gif" border="0"> (I did get out on Christmas day though <img src="i/expressions/face-icon-small-smile.gif" border="0"> )
My family & friends know that my health will determine whether I show up or not & they are 100 % ok w/ that. Most ppl in my life know that I have CF & changes in plans can happen.
As for Vacationing , Concerts, etc. I Pray & cross my fingers lol It is what it is & so I guess thats why when I am feeling good I am enjoying life to the fullest & am grateful for those moments.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[beleache]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>urmysunshine54</b></i> I really appreciate you all taking the time to share...and find you so positive, despite all of the health issues you've been dealing with. I truly feel like Joni does, the support and encouragement from these forums have been a godsend. I hope you don't mind me asking more questions. Just was wondering how do you make plans? I know good friends and family understand if you need to cancel getting together, but what about attending an out of town wedding, buying tickets to an event, etc. Do you find you've put your life 'on hold'? Do you just plan things last minute, or do you have a run of a month or two, where you're pretty confident you'll wake up feeling good? Thanks again, Susan[/q
Hi Susan,
Plans can be a bit tricky. I was supposed to have over 30 ppl at my house this past Christmas Eve but I was in the hospital <img src="i/expressions/face-icon-small-sad.gif" border="0"> (I did get out on Christmas day though <img src="i/expressions/face-icon-small-smile.gif" border="0"> )
My family & friends know that my health will determine whether I show up or not & they are 100 % ok w/ that. Most ppl in my life know that I have CF & changes in plans can happen.
As for Vacationing , Concerts, etc. I Pray & cross my fingers lol It is what it is & so I guess thats why when I am feeling good I am enjoying life to the fullest & am grateful for those moments.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[annalisa]

Hi, could you tell me which mutations do you have?
I know that each patient has got his own history, but it would be of encouragement fot other patients.
Stay healty!
thanks

 

[LittleLab4CF]

I was diagnosed at 51. With a pancreatic function test results off the scale, my doctor suggested genetic testing for CF which was positive. Having never smoked and although not a tea totaler, I would say I don't drink. Funny thing, I was a junior version of my father who although not a drinker, like many of his generation, the decision wasn't if one was to smoke but rather when to start. Smoking exaserbates CF and unfortunately in his case it masked the disease. It wouldn't have taken a doctor to arrive at the possibility I might have CF, our parallel medical problems indicated an inherited condition. My father's autopsy report had CF written all over it, with invisible ink. Being diagnosed late in life has made me very angry. I have done the loop from complaints, tests, medications that didn't work and then being sent to a psychaitrist, wich I obediently did too many times. I'm mad about it and I think this is an added demon for the lately diagnosed.

 

[LittleLab4CF]

I was diagnosed at 51. With a pancreatic function test results off the scale, my doctor suggested genetic testing for CF which was positive. Having never smoked and although not a tea totaler, I would say I don't drink. Funny thing, I was a junior version of my father who although not a drinker, like many of his generation, the decision wasn't if one was to smoke but rather when to start. Smoking exaserbates CF and unfortunately in his case it masked the disease. It wouldn't have taken a doctor to arrive at the possibility I might have CF, our parallel medical problems indicated an inherited condition. My father's autopsy report had CF written all over it, with invisible ink. Being diagnosed late in life has made me very angry. I have done the loop from complaints, tests, medications that didn't work and then being sent to a psychaitrist, wich I obediently did too many times. I'm mad about it and I think this is an added demon for the lately diagnosed.