For all Cystic's in there 20's

S

Sevenstars

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

First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.
</end quote></div>

I agree with this statement completely. I had about... 2 exacerbations from the time I was 8 til I was 18! Then when I hit college, it just took a huge toll on my body and of course I was older too, so my PFTs took a plummet.

Also I find doctors with the "everyone is waiting for a transplant" mindset to be very annoying too. Not every one of us wants a transplant... some of us are unable to get one for other reasons, too.

Why did you change docs anyway? Is this just your adult doc now that you've switched from pediatric care?

Edit: I also agree with miesl. You don't go from needing O2 and desatting to having sparkly clean lungs. Even if your PFTs are now 96% I'd be worried that they could drop or that if you are still desatting with them that high, that there is some other problem that hasn't been accounted for. (maybe the Bronchiectasis? I'm not familiar with that)
 
S

Sevenstars

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

First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.
</end quote></div>

I agree with this statement completely. I had about... 2 exacerbations from the time I was 8 til I was 18! Then when I hit college, it just took a huge toll on my body and of course I was older too, so my PFTs took a plummet.

Also I find doctors with the "everyone is waiting for a transplant" mindset to be very annoying too. Not every one of us wants a transplant... some of us are unable to get one for other reasons, too.

Why did you change docs anyway? Is this just your adult doc now that you've switched from pediatric care?

Edit: I also agree with miesl. You don't go from needing O2 and desatting to having sparkly clean lungs. Even if your PFTs are now 96% I'd be worried that they could drop or that if you are still desatting with them that high, that there is some other problem that hasn't been accounted for. (maybe the Bronchiectasis? I'm not familiar with that)
 
S

Sevenstars

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

First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.
</end quote></div>

I agree with this statement completely. I had about... 2 exacerbations from the time I was 8 til I was 18! Then when I hit college, it just took a huge toll on my body and of course I was older too, so my PFTs took a plummet.

Also I find doctors with the "everyone is waiting for a transplant" mindset to be very annoying too. Not every one of us wants a transplant... some of us are unable to get one for other reasons, too.

Why did you change docs anyway? Is this just your adult doc now that you've switched from pediatric care?

Edit: I also agree with miesl. You don't go from needing O2 and desatting to having sparkly clean lungs. Even if your PFTs are now 96% I'd be worried that they could drop or that if you are still desatting with them that high, that there is some other problem that hasn't been accounted for. (maybe the Bronchiectasis? I'm not familiar with that)
 
S

Sevenstars

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

First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.
</end quote>

I agree with this statement completely. I had about... 2 exacerbations from the time I was 8 til I was 18! Then when I hit college, it just took a huge toll on my body and of course I was older too, so my PFTs took a plummet.

Also I find doctors with the "everyone is waiting for a transplant" mindset to be very annoying too. Not every one of us wants a transplant... some of us are unable to get one for other reasons, too.

Why did you change docs anyway? Is this just your adult doc now that you've switched from pediatric care?

Edit: I also agree with miesl. You don't go from needing O2 and desatting to having sparkly clean lungs. Even if your PFTs are now 96% I'd be worried that they could drop or that if you are still desatting with them that high, that there is some other problem that hasn't been accounted for. (maybe the Bronchiectasis? I'm not familiar with that)
 
S

Sevenstars

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Audex</b></i>
<br />
<br />First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.
<br /></end quote>
<br />
<br />I agree with this statement completely. I had about... 2 exacerbations from the time I was 8 til I was 18! Then when I hit college, it just took a huge toll on my body and of course I was older too, so my PFTs took a plummet.
<br />
<br />Also I find doctors with the "everyone is waiting for a transplant" mindset to be very annoying too. Not every one of us wants a transplant... some of us are unable to get one for other reasons, too.
<br />
<br />Why did you change docs anyway? Is this just your adult doc now that you've switched from pediatric care?
<br />
<br />Edit: I also agree with miesl. You don't go from needing O2 and desatting to having sparkly clean lungs. Even if your PFTs are now 96% I'd be worried that they could drop or that if you are still desatting with them that high, that there is some other problem that hasn't been accounted for. (maybe the Bronchiectasis? I'm not familiar with that)
 
C

CFTEAMA

New member
I have a different doctor who is on my team that could talk with the lung doc. Thanks for allot the info guys.
 
C

CFTEAMA

New member
I have a different doctor who is on my team that could talk with the lung doc. Thanks for allot the info guys.
 
C

CFTEAMA

New member
I have a different doctor who is on my team that could talk with the lung doc. Thanks for allot the info guys.
 
C

CFTEAMA

New member
I have a different doctor who is on my team that could talk with the lung doc. Thanks for allot the info guys.
 
C

CFTEAMA

New member
I have a different doctor who is on my team that could talk with the lung doc. Thanks for allot the info guys.
 
J

jfarel

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote></div>


Nope. I find it strange as well. It doesn't make sense that your pft's are that high and you are sick every four weeks. Cf patients who are sick that often and need oxygen would normally be considered for a transplant. If you do not go to an approved CF Clinic, you should find one. From my understanding of CF, your story highly out of the ordinary---Not because you "have a mild case" but because you supposedly have a mild case and need oxygen and have infections every four weeks.

I will add, it is not unusual to have infections, but if the infections require IV therapy every four weeks, that is pretty serious stuff.
 
J

jfarel

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote></div>


Nope. I find it strange as well. It doesn't make sense that your pft's are that high and you are sick every four weeks. Cf patients who are sick that often and need oxygen would normally be considered for a transplant. If you do not go to an approved CF Clinic, you should find one. From my understanding of CF, your story highly out of the ordinary---Not because you "have a mild case" but because you supposedly have a mild case and need oxygen and have infections every four weeks.

I will add, it is not unusual to have infections, but if the infections require IV therapy every four weeks, that is pretty serious stuff.
 
J

jfarel

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote></div>


Nope. I find it strange as well. It doesn't make sense that your pft's are that high and you are sick every four weeks. Cf patients who are sick that often and need oxygen would normally be considered for a transplant. If you do not go to an approved CF Clinic, you should find one. From my understanding of CF, your story highly out of the ordinary---Not because you "have a mild case" but because you supposedly have a mild case and need oxygen and have infections every four weeks.

I will add, it is not unusual to have infections, but if the infections require IV therapy every four weeks, that is pretty serious stuff.
 
J

jfarel

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote>


Nope. I find it strange as well. It doesn't make sense that your pft's are that high and you are sick every four weeks. Cf patients who are sick that often and need oxygen would normally be considered for a transplant. If you do not go to an approved CF Clinic, you should find one. From my understanding of CF, your story highly out of the ordinary---Not because you "have a mild case" but because you supposedly have a mild case and need oxygen and have infections every four weeks.

I will add, it is not unusual to have infections, but if the infections require IV therapy every four weeks, that is pretty serious stuff.
 
J

jfarel

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>miesl</b></i>
<br />
<br />Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?
<br />
<br />
<br />
<br />My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.
<br />
<br />
<br />
<br />Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote>
<br />
<br />
<br />Nope. I find it strange as well. It doesn't make sense that your pft's are that high and you are sick every four weeks. Cf patients who are sick that often and need oxygen would normally be considered for a transplant. If you do not go to an approved CF Clinic, you should find one. From my understanding of CF, your story highly out of the ordinary---Not because you "have a mild case" but because you supposedly have a mild case and need oxygen and have infections every four weeks.
<br />
<br />I will add, it is not unusual to have infections, but if the infections require IV therapy every four weeks, that is pretty serious stuff.
<br />
 
C

cfsucks

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote></div>

i was questioning this myself too.
 
C

cfsucks

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote></div>

i was questioning this myself too.
 
C

cfsucks

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote></div>

i was questioning this myself too.
 
C

cfsucks

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

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?



My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.



Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote>

i was questioning this myself too.
 
C

cfsucks

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>miesl</b></i>
<br />
<br />Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?
<br />
<br />
<br />
<br />My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.
<br />
<br />
<br />
<br />Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.</end quote>
<br />
<br />i was questioning this myself too.
 
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