For all Cystic's in there 20's

[bittyhorse23]

<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 am confused too. My FEV1 is in the mid 40s and I am just now requiring O2 at home. I think if you are sick every 4 weeks and have FEV1 in the 90s something else is wrong besides CF. And if you need O2 at 96% then you need a new DR. And any DR that says you should be dead or on the TX list at 20 yrs old needs a new job.

 

[bittyhorse23]

<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 am confused too. My FEV1 is in the mid 40s and I am just now requiring O2 at home. I think if you are sick every 4 weeks and have FEV1 in the 90s something else is wrong besides CF. And if you need O2 at 96% then you need a new DR. And any DR that says you should be dead or on the TX list at 20 yrs old needs a new job.

 

[bittyhorse23]

<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 am confused too. My FEV1 is in the mid 40s and I am just now requiring O2 at home. I think if you are sick every 4 weeks and have FEV1 in the 90s something else is wrong besides CF. And if you need O2 at 96% then you need a new DR. And any DR that says you should be dead or on the TX list at 20 yrs old needs a new job.

 

[bittyhorse23]

<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 am confused too. My FEV1 is in the mid 40s and I am just now requiring O2 at home. I think if you are sick every 4 weeks and have FEV1 in the 90s something else is wrong besides CF. And if you need O2 at 96% then you need a new DR. And any DR that says you should be dead or on the TX list at 20 yrs old needs a new job.

 

[bittyhorse23]

<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 />Nope I am confused too. My FEV1 is in the mid 40s and I am just now requiring O2 at home. I think if you are sick every 4 weeks and have FEV1 in the 90s something else is wrong besides CF. And if you need O2 at 96% then you need a new DR. And any DR that says you should be dead or on the TX list at 20 yrs old needs a new job.

 

[CFTEAMA]

as I say I have other issues not Just CF. I also have blood issues that case me to get low sats and high heart rate. Get it got it good

 

[CFTEAMA]

as I say I have other issues not Just CF. I also have blood issues that case me to get low sats and high heart rate. Get it got it good

 

[CFTEAMA]

as I say I have other issues not Just CF. I also have blood issues that case me to get low sats and high heart rate. Get it got it good

 

[CFTEAMA]

as I say I have other issues not Just CF. I also have blood issues that case me to get low sats and high heart rate. Get it got it good

 

[CFTEAMA]

as I say I have other issues not Just CF. I also have blood issues that case me to get low sats and high heart rate. Get it got it good

 

[Daverog75]

Hello Sarah,

I wasn't even diagnosed with CF until I was 22, and transplant was not mentioned to me until this year. I am 33.

Dave

 

[Daverog75]

Hello Sarah,

I wasn't even diagnosed with CF until I was 22, and transplant was not mentioned to me until this year. I am 33.

Dave

 

[Daverog75]

Hello Sarah,

I wasn't even diagnosed with CF until I was 22, and transplant was not mentioned to me until this year. I am 33.

Dave

 

[Daverog75]

Hello Sarah,

I wasn't even diagnosed with CF until I was 22, and transplant was not mentioned to me until this year. I am 33.

Dave

 

[Daverog75]

Hello Sarah,

I wasn't even diagnosed with CF until I was 22, and transplant was not mentioned to me until this year. I am 33.

Dave

 

[Sevenstars]

Sorry if you haven't been following these threads.

Basically it came out that she was a liar in some form or another... none of her "stories" are concise and they make no sense. The other threads addressing this have been locked so they're probably many pages back by now.

That being said, you can probably find a good many people on here that were not diagnosed until later in life that ACTUALLY have CF, and would be more than happy to talk to you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

Sorry if you haven't been following these threads.

Basically it came out that she was a liar in some form or another... none of her "stories" are concise and they make no sense. The other threads addressing this have been locked so they're probably many pages back by now.

That being said, you can probably find a good many people on here that were not diagnosed until later in life that ACTUALLY have CF, and would be more than happy to talk to you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

Sorry if you haven't been following these threads.

Basically it came out that she was a liar in some form or another... none of her "stories" are concise and they make no sense. The other threads addressing this have been locked so they're probably many pages back by now.

That being said, you can probably find a good many people on here that were not diagnosed until later in life that ACTUALLY have CF, and would be more than happy to talk to you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

Sorry if you haven't been following these threads.

Basically it came out that she was a liar in some form or another... none of her "stories" are concise and they make no sense. The other threads addressing this have been locked so they're probably many pages back by now.

That being said, you can probably find a good many people on here that were not diagnosed until later in life that ACTUALLY have CF, and would be more than happy to talk to you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

Sorry if you haven't been following these threads.
<br />
<br />Basically it came out that she was a liar in some form or another... none of her "stories" are concise and they make no sense. The other threads addressing this have been locked so they're probably many pages back by now.
<br />
<br />That being said, you can probably find a good many people on here that were not diagnosed until later in life that ACTUALLY have CF, and would be more than happy to talk to you. <img src="i/expressions/face-icon-small-smile.gif" border="0">