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

[urmysunshine54]

I thought I was relatively healthy until about 5 years ago. Looking back though, I probably had a similar experience to most adults that recieved a latediagnosis of cf...in that I was somewhat sick through the years, but was able to handle all that came my way in terms of living my life as awife, mom andcareer woman. The last 3 years have been the toughest (surgeries, hospitalizations.sinus infections,pulmonary issues, etc.) -severe joint, bone and muscle pain (which is not related to cf).
With that long winded intro, here's the question...and it's probably geared for those that received a late diagnosis of cf in life. While some days aren't as bad as others,many are pretty difficult -and I'm alwaysaware that I'm struggling to keep myself on trackat bothwork and home because Ifeel lousy.Is is reasonable to expect that by addingthe cf 'regimen'to my day, that I'll feel 'back to my old self" at some point...and be able to sustain it?Or do you always feel somewhat sick and have just managed to rise above it?
----------------------------------------------------------------------------------------------- Susan (dx at 57 in Jan 2012)

 

[urmysunshine54]

I thought I was relatively healthy until about 5 years ago. Looking back though, I probably had a similar experience to most adults that recieved a latediagnosis of cf...in that I was somewhat sick through the years, but was able to handle all that came my way in terms of living my life as awife, mom andcareer woman. The last 3 years have been the toughest (surgeries, hospitalizations.sinus infections,pulmonary issues, etc.) -severe joint, bone and muscle pain (which is not related to cf).
With that long winded intro, here's the question...and it's probably geared for those that received a late diagnosis of cf in life. While some days aren't as bad as others,many are pretty difficult -and I'm alwaysaware that I'm struggling to keep myself on trackat bothwork and home because Ifeel lousy.Is is reasonable to expect that by addingthe cf 'regimen'to my day, that I'll feel 'back to my old self" at some point...and be able to sustain it?Or do you always feel somewhat sick and have just managed to rise above it?
----------------------------------------------------------------------------------------------- Susan (dx at 57 in Jan 2012)

 

[Printer]

Susan:

I was dx at age 47. In short, with meds, treatment and a "definition" as to why I am sick I am healther now than I was at age 47.

Bill

 

[Printer]

Susan:

I was dx at age 47. In short, with meds, treatment and a "definition" as to why I am sick I am healther now than I was at age 47.

Bill

 

[urmysunshine54]

Very, very encouraging. Thanks, Bill.

 

[urmysunshine54]

Very, very encouraging. Thanks, Bill.

 

[bea50]

I was diagnosed last year in July (i was 49 then, i'm 50 now) after being really sick for the last 3 years. I usually culture staph but in October, my CF dr. told me i was also culturing MAC. The treatment for MAC is pretty intense and i'm struggling a little bit with the meds so i'm not feeling my best right now; however, i would have to say that after being on Hypertonic Saline and Pulmozyme for almost 8 months now, I can tell a huge difference in how i am functioning day to day. Before my diagnosis and the opportunity to be given the right medications i was a mess and nothing was helping. I had to quit my job last year because i was in out of hospitals so often and i was approved for disability in August. Right now i would say my full time job is taking care of myself and even though i am not where i would like to be, i am in better shape than i was last year at this time when i didn't know what was wrong with me. I hope i will get to feeling even better but i guess a lot of that depends on how i do with the MAC treatment and since I do have a lot of lung damage from years of undiagnosed CF and bronchiactasis, i really don't know how likely that is either.

 

[bea50]

I was diagnosed last year in July (i was 49 then, i'm 50 now) after being really sick for the last 3 years. I usually culture staph but in October, my CF dr. told me i was also culturing MAC. The treatment for MAC is pretty intense and i'm struggling a little bit with the meds so i'm not feeling my best right now; however, i would have to say that after being on Hypertonic Saline and Pulmozyme for almost 8 months now, I can tell a huge difference in how i am functioning day to day. Before my diagnosis and the opportunity to be given the right medications i was a mess and nothing was helping. I had to quit my job last year because i was in out of hospitals so often and i was approved for disability in August. Right now i would say my full time job is taking care of myself and even though i am not where i would like to be, i am in better shape than i was last year at this time when i didn't know what was wrong with me. I hope i will get to feeling even better but i guess a lot of that depends on how i do with the MAC treatment and since I do have a lot of lung damage from years of undiagnosed CF and bronchiactasis, i really don't know how likely that is either.

 

[Printer]

Bea

Be patient, it will get better.

Bill

 

[Printer]

Bea

Be patient, it will get better.

Bill

 

[beleache]

Hi Susan,
I would have to say the answer for me would be both.. While somedays are rough, there are days that I fee.l dare I say wonderful..
As we age, even ppl w/o CF, health issues do seem to worsen. That being said, I do do whatever I can to stay as healthy as possible ...
Like Bea said, taking care of myself is a full time job, but one I am willing to take on so that I know I am doing all I can to be here with my family as long as I can & until God decides it's time for me to come home.
I was dxd at 44 & worked for several years after, until I realized it was becoming to much for me.
There have been many bumps in the road, two of hardest were when I went into renal failure from IV abx the other was when I cultured Mycobacterium abbesses about 3 1/2 yrs ago.. The Myco dx hit me hard & thank God I got the support I need here at cf.com to ease some of my fears.
I know it isn't easy, but there is always hope ! Hang in & if you want to chat pm me..
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[beleache]

Hi Susan,
I would have to say the answer for me would be both.. While somedays are rough, there are days that I fee.l dare I say wonderful..
As we age, even ppl w/o CF, health issues do seem to worsen. That being said, I do do whatever I can to stay as healthy as possible ...
Like Bea said, taking care of myself is a full time job, but one I am willing to take on so that I know I am doing all I can to be here with my family as long as I can & until God decides it's time for me to come home.
I was dxd at 44 & worked for several years after, until I realized it was becoming to much for me.
There have been many bumps in the road, two of hardest were when I went into renal failure from IV abx the other was when I cultured Mycobacterium abbesses about 3 1/2 yrs ago.. The Myco dx hit me hard & thank God I got the support I need here at cf.com to ease some of my fears.
I know it isn't easy, but there is always hope ! Hang in & if you want to chat pm me..
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[kgfrompa]

I was DX at 50 and will be 56 next month,I have to work at eating and taking care of my self with my meds and walking as much as I can I have joint pain and get teird by afternoon.My morning are when I feel my best by afternoon I am winding down energy wise.i do have pain in my lungs that is awful but with all the junk that I cough it makes me understand why they hurt I think I have alot more damage because no one knew it was Cf .I am very grateful to know why I am sick and to have a DX.I have had so many collasped lungs 19 in all that I have scaring which is part of why my lungs hurt so.

 

[kgfrompa]

I was DX at 50 and will be 56 next month,I have to work at eating and taking care of my self with my meds and walking as much as I can I have joint pain and get teird by afternoon.My morning are when I feel my best by afternoon I am winding down energy wise.i do have pain in my lungs that is awful but with all the junk that I cough it makes me understand why they hurt I think I have alot more damage because no one knew it was Cf .I am very grateful to know why I am sick and to have a DX.I have had so many collasped lungs 19 in all that I have scaring which is part of why my lungs hurt so.

 

[kgfrompa]

I was DX at 50 and will be 56 next month,I have to work at eating and taking care of my self with my meds and walking as much as I can I have joint pain and get teird by afternoon.My morning are when I feel my best by afternoon I am winding down energy wise.i do have pain in my lungs that is awful but with all the junk that I cough it makes me understand why they hurt I think I have alot more damage because no one knew it was Cf .I am very grateful to know why I am sick and to have a DX.I have had so many collasped lungs 19 in all that I have scaring which is part of why my lungs hurt so.

 

[kgfrompa]

I was DX at 50 and will be 56 next month,I have to work at eating and taking care of my self with my meds and walking as much as I can I have joint pain and get teird by afternoon.My morning are when I feel my best by afternoon I am winding down energy wise.i do have pain in my lungs that is awful but with all the junk that I cough it makes me understand why they hurt I think I have alot more damage because no one knew it was Cf .I am very grateful to know why I am sick and to have a DX.I have had so many collasped lungs 19 in all that I have scaring which is part of why my lungs hurt so.

 

[urmysunshine54]

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

 

[urmysunshine54]

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

 

[kgfrompa]

I no longer make plans, most that know me understand .It is not good to push my self so that I run myself down which doent take much.Now if I have a special event I rest and rest and then go until my body has had enough.It has taking alot of time and events to listen to my body.I have to go with how I am and accept one day at a time.

 

[kgfrompa]

I no longer make plans, most that know me understand .It is not good to push my self so that I run myself down which doent take much.Now if I have a special event I rest and rest and then go until my body has had enough.It has taking alot of time and events to listen to my body.I have to go with how I am and accept one day at a time.