Supporting someone DX later in life

M

mamaScarlett

Active member
For those of you who've been diagnosed later in life (over 30, say) how did you cope with it?
What could I do to support someone who is Dx later in life?
Its hard for me to think of the emotions that a person would go through. I was dx at 1.5 yrs old. Its all I've ever known. What about when you're 35, 40, 50, you've been basically healthy your whole life with some odd things here and there, and then you find this out?
If you are still 'relatively' healthy, but you have Cf, is it easier? Or not at all?
 
M

mamaScarlett

Active member
For those of you who've been diagnosed later in life (over 30, say) how did you cope with it?
What could I do to support someone who is Dx later in life?
Its hard for me to think of the emotions that a person would go through. I was dx at 1.5 yrs old. Its all I've ever known. What about when you're 35, 40, 50, you've been basically healthy your whole life with some odd things here and there, and then you find this out?
If you are still 'relatively' healthy, but you have Cf, is it easier? Or not at all?
 
P

Printer

Active member
I was dx at age 47. I didn't have to cope with it, my dx was a blessing. See, I was NEVER was "basically healthy". I was always a thin, underweight, sickly kid. In one ten year span (before dx) I was hospitalized over 80 times.

My dx saved my life.

Bill
 
P

Printer

Active member
I was dx at age 47. I didn't have to cope with it, my dx was a blessing. See, I was NEVER was "basically healthy". I was always a thin, underweight, sickly kid. In one ten year span (before dx) I was hospitalized over 80 times.

My dx saved my life.

Bill
 
G

gunelle

Guest
Hi, I agree with Bill, that a diagnosis for me was a relief. I was diagnosed at 32. It was not like I was perfectly healthy and "normal" and then getting a diagnosis out of the blue. I knew something was wrong, I just did not know what it was. I was a bit shocked at first, but I had playeded with the tought in my head, over a period of time, reading about CF, talking about it with my doctor etc, so when the diagnosis finally came it wasn't something that I had never heard of. But it had of course a inpact on my life, mainly becasue of the medication I had to take. Making a new shedule of my day. At first I didn't want to do it... it was too much, but slowly I began, and now it has become rutine. I am "relativly healthy" as you put it. I have "mild" CF and yes the diagnosis made a difference, for the better. Before diagnois I had reacurring pneumonia, and felt much worse than I do now. It is a life change, but for the better. I now know why I always have been sick, and now I can treat that.
 
G

gunelle

Guest
Hi, I agree with Bill, that a diagnosis for me was a relief. I was diagnosed at 32. It was not like I was perfectly healthy and "normal" and then getting a diagnosis out of the blue. I knew something was wrong, I just did not know what it was. I was a bit shocked at first, but I had playeded with the tought in my head, over a period of time, reading about CF, talking about it with my doctor etc, so when the diagnosis finally came it wasn't something that I had never heard of. But it had of course a inpact on my life, mainly becasue of the medication I had to take. Making a new shedule of my day. At first I didn't want to do it... it was too much, but slowly I began, and now it has become rutine. I am "relativly healthy" as you put it. I have "mild" CF and yes the diagnosis made a difference, for the better. Before diagnois I had reacurring pneumonia, and felt much worse than I do now. It is a life change, but for the better. I now know why I always have been sick, and now I can treat that.
 
G

gunelle

Guest
Just want to add, I am still me, I just now know what's wrong with me.
 
G

gunelle

Guest
Just want to add, I am still me, I just now know what's wrong with me.
 
K

kgfrompa

Guest
I WAS DX WHEN I WAS 50 AND WILL BE 56 IN APRIL.I ALSO HAVE BEEN VERY SICK OFF AND ON WONDERING WHAT WAS WRONG WITH ME. SO WHEN THEY TOLD ME CF I NEVER EVEN HEARD THE WORD FIRST I HAD TO LEARN TO SPELL IT,I REALLY THROUGH MYSELF INTO READING AND LEARNING ALL I COULD AND THINGS LIKE EMZYMES AND MEDS WERE AND STILL ARE A LEARNING PROCESS.hOW GRATEFUL I AM TO THE CFS THAT TEACH ME AND HELP ME THROUGH THE TUFF TIMES I DO HAVE MY FAVORITES WHO HELP ME UNDERSTAND CF.WE ALL SUPPORT EACH EVEN WHEN I ASK QUESTIONS I KNOW MAYBE ONE PERSON CAN INDENTIFY AND SOMETIMES THAT IS ALL I NEED.
 
K

kgfrompa

Guest
I WAS DX WHEN I WAS 50 AND WILL BE 56 IN APRIL.I ALSO HAVE BEEN VERY SICK OFF AND ON WONDERING WHAT WAS WRONG WITH ME. SO WHEN THEY TOLD ME CF I NEVER EVEN HEARD THE WORD FIRST I HAD TO LEARN TO SPELL IT,I REALLY THROUGH MYSELF INTO READING AND LEARNING ALL I COULD AND THINGS LIKE EMZYMES AND MEDS WERE AND STILL ARE A LEARNING PROCESS.hOW GRATEFUL I AM TO THE CFS THAT TEACH ME AND HELP ME THROUGH THE TUFF TIMES I DO HAVE MY FAVORITES WHO HELP ME UNDERSTAND CF.WE ALL SUPPORT EACH EVEN WHEN I ASK QUESTIONS I KNOW MAYBE ONE PERSON CAN INDENTIFY AND SOMETIMES THAT IS ALL I NEED.
 
B

beleache

New member
I was dxd @ 44 & truthfully it was a relief after so many years knowing there was something wrong (wrong dx, surgeries, hospitalizations,dr visits, being in pain, you name it) & then finally knowing what it was.. although, after reading what CF was, it scared the crap out of me lol..
It truly changed my perspective on life. An example: for a few years before my 40th. B'day I warned my husband NOT to give me a 40th. B'day party.. Then dxd @ 44 & when I was getting closer to 50 I wanted a party for my 50th.(didnt get one though lol) & was so proud, now knowing what cf was , that I was turing 50! Fast forward to this past Dec. 2011 when I turned 60 ! & my husband threw me the best surprise (& yes i was really surprised) 60th. B'day ! It was a celebration of life party & was great !
Anyways, I would say if someone is a late dx the best thing would be to listen to them, answer their questions & support them in any way you can.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
B

beleache

New member
I was dxd @ 44 & truthfully it was a relief after so many years knowing there was something wrong (wrong dx, surgeries, hospitalizations,dr visits, being in pain, you name it) & then finally knowing what it was.. although, after reading what CF was, it scared the crap out of me lol..
It truly changed my perspective on life. An example: for a few years before my 40th. B'day I warned my husband NOT to give me a 40th. B'day party.. Then dxd @ 44 & when I was getting closer to 50 I wanted a party for my 50th.(didnt get one though lol) & was so proud, now knowing what cf was , that I was turing 50! Fast forward to this past Dec. 2011 when I turned 60 ! & my husband threw me the best surprise (& yes i was really surprised) 60th. B'day ! It was a celebration of life party & was great !
Anyways, I would say if someone is a late dx the best thing would be to listen to them, answer their questions & support them in any way you can.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
S

stephen

Guest
Hi,

I could not agree more with Bill!

I was diagnosed at the age of 63 in 2005. The diagnosis was really a blessing, thank G-d! It made drugs and a treatment regiment available that is only available to CF suffers. What a life changer.

In addition, it finally provided definitive answers of why I had persistent lung infections all my life and what really caused my lung damage, among other things. Multiple sweat tests over the years were always negative and Immotile Celia had been the suspected cause.

I'll never forget getting the phone call from Dr Gwen Huitt at National Jewish advising me of the results of the genetic testing. I was stunned at first. She wanted to know if it upset me. She added that at my age there was probably nothing to be upset about - and there wasn't.

I am probably grateful at not being diagnosed at a much younger age. Although the course of my disease might not have been much different, a CF diagnosis in the 1940's, 50's, or 60's would probably have been extremely hard to live with. The prognosis then was not as positive as it is now. The drugs and treatments (including transplants) were not available then. Thank G-d for the progress that is being made!

Best wishes to all

Stephen,
Age 70
FEV1 of 48%, otherwise feel great, thank G-d
 
S

stephen

Guest
Hi,

I could not agree more with Bill!

I was diagnosed at the age of 63 in 2005. The diagnosis was really a blessing, thank G-d! It made drugs and a treatment regiment available that is only available to CF suffers. What a life changer.

In addition, it finally provided definitive answers of why I had persistent lung infections all my life and what really caused my lung damage, among other things. Multiple sweat tests over the years were always negative and Immotile Celia had been the suspected cause.

I'll never forget getting the phone call from Dr Gwen Huitt at National Jewish advising me of the results of the genetic testing. I was stunned at first. She wanted to know if it upset me. She added that at my age there was probably nothing to be upset about - and there wasn't.

I am probably grateful at not being diagnosed at a much younger age. Although the course of my disease might not have been much different, a CF diagnosis in the 1940's, 50's, or 60's would probably have been extremely hard to live with. The prognosis then was not as positive as it is now. The drugs and treatments (including transplants) were not available then. Thank G-d for the progress that is being made!

Best wishes to all

Stephen,
Age 70
FEV1 of 48%, otherwise feel great, thank G-d
 
K

kiwilady

Member
Hello, After many years of escaping the final diagnosis, a more vigilant General Practitioner questioned my more frequent visits to his surgery. It wasn't just because I found him to be a hunky guy! This good Doc queried my family history, my countless chest infections and nasal polyp ops. He insisted I see a Chest Specialist pronto. The positive sweat test came as no real surprise. I had lost a younger bro to CF at age 22, my elder sister also had Cf. I was diagnosed at age 37, my sister died at age 43yrs, 6yrs after my diagnosis. The diagnosis came with mixed emotions, I had witnessed first hand my brothers and sisters struggles and wrongly assumed what was ahead. Like Bill stated, I too was never basically healthy. CF impacts daily on my life. MamaScarlett, you would be able to relate so much of your own CF experiences to the person in question. Your signature quotes, "you work hard, while living your life to the full", thats sound advice. It's never too late to be proactive with your health issues. I find too, exercise vital, tennis, walking, and cycling over the 6 decades has kept my bung-lungs going! You could also let the said person know of this wonderful, supportive forum and the amazing older CF generation that despite the odds, its onwards and upwards for many of us! Celebrate every day on this earth. Cheers Eileen. <img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />
 
K

kiwilady

Member
Hello, After many years of escaping the final diagnosis, a more vigilant General Practitioner questioned my more frequent visits to his surgery. It wasn't just because I found him to be a hunky guy! This good Doc queried my family history, my countless chest infections and nasal polyp ops. He insisted I see a Chest Specialist pronto. The positive sweat test came as no real surprise. I had lost a younger bro to CF at age 22, my elder sister also had Cf. I was diagnosed at age 37, my sister died at age 43yrs, 6yrs after my diagnosis. The diagnosis came with mixed emotions, I had witnessed first hand my brothers and sisters struggles and wrongly assumed what was ahead. Like Bill stated, I too was never basically healthy. CF impacts daily on my life. MamaScarlett, you would be able to relate so much of your own CF experiences to the person in question. Your signature quotes, "you work hard, while living your life to the full", thats sound advice. It's never too late to be proactive with your health issues. I find too, exercise vital, tennis, walking, and cycling over the 6 decades has kept my bung-lungs going! You could also let the said person know of this wonderful, supportive forum and the amazing older CF generation that despite the odds, its onwards and upwards for many of us! Celebrate every day on this earth. Cheers Eileen. <img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />
 
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