Mild and Rare Cases...where are you?

[wanderlost]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdubbs</b></i>

SWIM!



PFTs above 100%. FEV1/FVC ratio is slightly low. Culture PA. Take enzymes. 4 polypectomies, no sense of smell. PFTs dropped during college when I did little exercise and no physiotherapy. Since then I've exercised regularly (but no physio) and PFTs have remained stable.



The best exercise, hands down, for my lungs is swimming. 1.5 hours of pretty vigorous (albeit slow) swimming for 6 months boosted my pfts by 10 points, after having been stable for about 5 years. If you want to boost your lung capacity, swim. Having said that, I should probably get back in the pool.



Quick search found: (of course maybe people with large lungs are better at swimming to begin with, but hey)



<a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/abstract/6/2/237
">http://www.erj.ersjournals.com...bstract/6/2/237
</a>


Best wishes



-James



31/w cf</end quote></div>

like I keep saying! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[wanderlost]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdubbs</b></i>

SWIM!



PFTs above 100%. FEV1/FVC ratio is slightly low. Culture PA. Take enzymes. 4 polypectomies, no sense of smell. PFTs dropped during college when I did little exercise and no physiotherapy. Since then I've exercised regularly (but no physio) and PFTs have remained stable.



The best exercise, hands down, for my lungs is swimming. 1.5 hours of pretty vigorous (albeit slow) swimming for 6 months boosted my pfts by 10 points, after having been stable for about 5 years. If you want to boost your lung capacity, swim. Having said that, I should probably get back in the pool.



Quick search found: (of course maybe people with large lungs are better at swimming to begin with, but hey)



<a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/abstract/6/2/237
">http://www.erj.ersjournals.com...bstract/6/2/237
</a>


Best wishes



-James



31/w cf</end quote></div>

like I keep saying! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[wanderlost]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdubbs</b></i>

SWIM!



PFTs above 100%. FEV1/FVC ratio is slightly low. Culture PA. Take enzymes. 4 polypectomies, no sense of smell. PFTs dropped during college when I did little exercise and no physiotherapy. Since then I've exercised regularly (but no physio) and PFTs have remained stable.



The best exercise, hands down, for my lungs is swimming. 1.5 hours of pretty vigorous (albeit slow) swimming for 6 months boosted my pfts by 10 points, after having been stable for about 5 years. If you want to boost your lung capacity, swim. Having said that, I should probably get back in the pool.



Quick search found: (of course maybe people with large lungs are better at swimming to begin with, but hey)



<a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/abstract/6/2/237
">http://www.erj.ersjournals.com...bstract/6/2/237
</a>


Best wishes



-James



31/w cf</end quote></div>

like I keep saying! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[wanderlost]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdubbs</b></i>

SWIM!



PFTs above 100%. FEV1/FVC ratio is slightly low. Culture PA. Take enzymes. 4 polypectomies, no sense of smell. PFTs dropped during college when I did little exercise and no physiotherapy. Since then I've exercised regularly (but no physio) and PFTs have remained stable.



The best exercise, hands down, for my lungs is swimming. 1.5 hours of pretty vigorous (albeit slow) swimming for 6 months boosted my pfts by 10 points, after having been stable for about 5 years. If you want to boost your lung capacity, swim. Having said that, I should probably get back in the pool.



Quick search found: (of course maybe people with large lungs are better at swimming to begin with, but hey)



<a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/abstract/6/2/237
">http://www.erj.ersjournals.com...bstract/6/2/237
</a>


Best wishes



-James



31/w cf</end quote></div>

like I keep saying! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[wanderlost]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdubbs</b></i>

SWIM!



PFTs above 100%. FEV1/FVC ratio is slightly low. Culture PA. Take enzymes. 4 polypectomies, no sense of smell. PFTs dropped during college when I did little exercise and no physiotherapy. Since then I've exercised regularly (but no physio) and PFTs have remained stable.



The best exercise, hands down, for my lungs is swimming. 1.5 hours of pretty vigorous (albeit slow) swimming for 6 months boosted my pfts by 10 points, after having been stable for about 5 years. If you want to boost your lung capacity, swim. Having said that, I should probably get back in the pool.



Quick search found: (of course maybe people with large lungs are better at swimming to begin with, but hey)



<a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/abstract/6/2/237
">http://www.erj.ersjournals.com...bstract/6/2/237
</a>


Best wishes



-James



31/w cf</end quote>

like I keep saying! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[wanderlost]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdubbs</b></i>

SWIM!



PFTs above 100%. FEV1/FVC ratio is slightly low. Culture PA. Take enzymes. 4 polypectomies, no sense of smell. PFTs dropped during college when I did little exercise and no physiotherapy. Since then I've exercised regularly (but no physio) and PFTs have remained stable.



The best exercise, hands down, for my lungs is swimming. 1.5 hours of pretty vigorous (albeit slow) swimming for 6 months boosted my pfts by 10 points, after having been stable for about 5 years. If you want to boost your lung capacity, swim. Having said that, I should probably get back in the pool.



Quick search found: (of course maybe people with large lungs are better at swimming to begin with, but hey)



<a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/abstract/6/2/237
">http://www.erj.ersjournals.com...bstract/6/2/237
</a>


Best wishes



-James



31/w cf</end quote>

like I keep saying! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[jdprecious]

wow that is good to know james.... my little fishy should have even better pft's next visit!!!! she asks me at least ten times a day if we can go to the pool today... guess i will stop telling her not today!! haha!

 

[jdprecious]

wow that is good to know james.... my little fishy should have even better pft's next visit!!!! she asks me at least ten times a day if we can go to the pool today... guess i will stop telling her not today!! haha!

 

[jdprecious]

wow that is good to know james.... my little fishy should have even better pft's next visit!!!! she asks me at least ten times a day if we can go to the pool today... guess i will stop telling her not today!! haha!

 

[jdprecious]

wow that is good to know james.... my little fishy should have even better pft's next visit!!!! she asks me at least ten times a day if we can go to the pool today... guess i will stop telling her not today!! haha!

 

[jdprecious]

wow that is good to know james.... my little fishy should have even better pft's next visit!!!! she asks me at least ten times a day if we can go to the pool today... guess i will stop telling her not today!! haha!

 

[jdprecious]

wow that is good to know james.... my little fishy should have even better pft's next visit!!!! she asks me at least ten times a day if we can go to the pool today... guess i will stop telling her not today!! haha!

 

[jodijp]

Hi everyone, I'm new to the board <img src="i/expressions/face-icon-small-happy.gif" border="0">

Lindsay, I can completely relate to your situation. Since my dx at 25, I really didn't have too many problems until 7 years ago at 44 when I contracted mycobacterial avium, which completely flipped my world upside down, as I knew it.

Prior to that time, I tried to fit in to the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life, married, 2 kids, working full time. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going.

But then, on the other hand, having 'so called mild' CF with all my medical routine & minor problems, I didn't quite fit in the healthy, normal world either!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"> A lot of people I knew didn't even know I had CF, which I felt was on a 'need to know' basis of who I told or not.

Fast forward to the present. I've still been pretty healthy until this last year. Fighting infections right & left with my baseline & PFTs gradually slipping down a notch. I don't seem to be able to bounce back like I used to after a tune up. But fight I will. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsay, take care of yourself, even if you feel fine. There is no crystal ball out there or guesstimate prognosis. Things change in an instant and sometimes there is no turning the clock back. In the CF world, it is not a question of if, but of when. Jeez, like I need to tell anyone here that!!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I hope to get to know some of you here. We can never learn too much about what we may need to face down the road.

 

[jodijp]

Hi everyone, I'm new to the board <img src="i/expressions/face-icon-small-happy.gif" border="0">

Lindsay, I can completely relate to your situation. Since my dx at 25, I really didn't have too many problems until 7 years ago at 44 when I contracted mycobacterial avium, which completely flipped my world upside down, as I knew it.

Prior to that time, I tried to fit in to the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life, married, 2 kids, working full time. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going.

But then, on the other hand, having 'so called mild' CF with all my medical routine & minor problems, I didn't quite fit in the healthy, normal world either!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"> A lot of people I knew didn't even know I had CF, which I felt was on a 'need to know' basis of who I told or not.

Fast forward to the present. I've still been pretty healthy until this last year. Fighting infections right & left with my baseline & PFTs gradually slipping down a notch. I don't seem to be able to bounce back like I used to after a tune up. But fight I will. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsay, take care of yourself, even if you feel fine. There is no crystal ball out there or guesstimate prognosis. Things change in an instant and sometimes there is no turning the clock back. In the CF world, it is not a question of if, but of when. Jeez, like I need to tell anyone here that!!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I hope to get to know some of you here. We can never learn too much about what we may need to face down the road.

 

[jodijp]

Hi everyone, I'm new to the board <img src="i/expressions/face-icon-small-happy.gif" border="0">

Lindsay, I can completely relate to your situation. Since my dx at 25, I really didn't have too many problems until 7 years ago at 44 when I contracted mycobacterial avium, which completely flipped my world upside down, as I knew it.

Prior to that time, I tried to fit in to the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life, married, 2 kids, working full time. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going.

But then, on the other hand, having 'so called mild' CF with all my medical routine & minor problems, I didn't quite fit in the healthy, normal world either!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"> A lot of people I knew didn't even know I had CF, which I felt was on a 'need to know' basis of who I told or not.

Fast forward to the present. I've still been pretty healthy until this last year. Fighting infections right & left with my baseline & PFTs gradually slipping down a notch. I don't seem to be able to bounce back like I used to after a tune up. But fight I will. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsay, take care of yourself, even if you feel fine. There is no crystal ball out there or guesstimate prognosis. Things change in an instant and sometimes there is no turning the clock back. In the CF world, it is not a question of if, but of when. Jeez, like I need to tell anyone here that!!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I hope to get to know some of you here. We can never learn too much about what we may need to face down the road.

 

[jodijp]

Hi everyone, I'm new to the board <img src="i/expressions/face-icon-small-happy.gif" border="0">

Lindsay, I can completely relate to your situation. Since my dx at 25, I really didn't have too many problems until 7 years ago at 44 when I contracted mycobacterial avium, which completely flipped my world upside down, as I knew it.

Prior to that time, I tried to fit in to the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life, married, 2 kids, working full time. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going.

But then, on the other hand, having 'so called mild' CF with all my medical routine & minor problems, I didn't quite fit in the healthy, normal world either!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"> A lot of people I knew didn't even know I had CF, which I felt was on a 'need to know' basis of who I told or not.

Fast forward to the present. I've still been pretty healthy until this last year. Fighting infections right & left with my baseline & PFTs gradually slipping down a notch. I don't seem to be able to bounce back like I used to after a tune up. But fight I will. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsay, take care of yourself, even if you feel fine. There is no crystal ball out there or guesstimate prognosis. Things change in an instant and sometimes there is no turning the clock back. In the CF world, it is not a question of if, but of when. Jeez, like I need to tell anyone here that!!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I hope to get to know some of you here. We can never learn too much about what we may need to face down the road.

 

[jodijp]

Hi everyone, I'm new to the board <img src="i/expressions/face-icon-small-happy.gif" border="0">

Lindsay, I can completely relate to your situation. Since my dx at 25, I really didn't have too many problems until 7 years ago at 44 when I contracted mycobacterial avium, which completely flipped my world upside down, as I knew it.

Prior to that time, I tried to fit in to the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life, married, 2 kids, working full time. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going.

But then, on the other hand, having 'so called mild' CF with all my medical routine & minor problems, I didn't quite fit in the healthy, normal world either!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"> A lot of people I knew didn't even know I had CF, which I felt was on a 'need to know' basis of who I told or not.

Fast forward to the present. I've still been pretty healthy until this last year. Fighting infections right & left with my baseline & PFTs gradually slipping down a notch. I don't seem to be able to bounce back like I used to after a tune up. But fight I will. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsay, take care of yourself, even if you feel fine. There is no crystal ball out there or guesstimate prognosis. Things change in an instant and sometimes there is no turning the clock back. In the CF world, it is not a question of if, but of when. Jeez, like I need to tell anyone here that!!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I hope to get to know some of you here. We can never learn too much about what we may need to face down the road.

 

[jodijp]

Hi everyone, I'm new to the board <img src="i/expressions/face-icon-small-happy.gif" border="0">

Lindsay, I can completely relate to your situation. Since my dx at 25, I really didn't have too many problems until 7 years ago at 44 when I contracted mycobacterial avium, which completely flipped my world upside down, as I knew it.

Prior to that time, I tried to fit in to the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life, married, 2 kids, working full time. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going.

But then, on the other hand, having 'so called mild' CF with all my medical routine & minor problems, I didn't quite fit in the healthy, normal world either!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"> A lot of people I knew didn't even know I had CF, which I felt was on a 'need to know' basis of who I told or not.

Fast forward to the present. I've still been pretty healthy until this last year. Fighting infections right & left with my baseline & PFTs gradually slipping down a notch. I don't seem to be able to bounce back like I used to after a tune up. But fight I will. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsay, take care of yourself, even if you feel fine. There is no crystal ball out there or guesstimate prognosis. Things change in an instant and sometimes there is no turning the clock back. In the CF world, it is not a question of if, but of when. Jeez, like I need to tell anyone here that!!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I hope to get to know some of you here. We can never learn too much about what we may need to face down the road.

 

[lmattaway]

Jodi,
Welcome! Thanks for the post. Hope you find this community helpful. Coming on the forum helps to remind me that I need to take the best care of myself that I can. And you're right, we can never be too educated!

 

[lmattaway]

Jodi,
Welcome! Thanks for the post. Hope you find this community helpful. Coming on the forum helps to remind me that I need to take the best care of myself that I can. And you're right, we can never be too educated!