For all Cystic's in there 20's

[lilmac7]

<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 have to second this! I'm 26 and am at 38-40% PFT, I work out alot (weight lifting) and push myself hard, I mean REALLY push myself 5 days a week for an hour to an hour and a half and I have competed the last 3 years in bodybuilding competitions. I can cycle/treadmill at a nice brisk pace easily enough for 15min maybe longer but I've never really tested it much 'cause I hate cardio, I mainly only do it when I'm preparing for a competition to cut down some fat and help get my breathing up to speed to handle the posing onstage. And I do all this without oxygen, granted I am of the belief that because of me pushing myself so hard all the time my body has somehow adapted to be able to cope despite the low PFT's. I'm kinda wondering if this doc knows what to look for on the PFT's for basing the extent of lung damage? The reason I say this is because like what miesl mentioned, my FEV1 (which is what is used to base the extent of lung damage) was last time I checked 38-40% but my FVC was quite high like 70's or something, if I remember right. So if they were reading from that in error then I wouldn't have much to worry about. Definitely I'd say get a doctor that's an expert in CF to evaluate you. And maybe you can ask them for a copy of the print out and post what's on it and someone hear can help you out with understanding it better.

 

[lilmac7]

<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 have to second this! I'm 26 and am at 38-40% PFT, I work out alot (weight lifting) and push myself hard, I mean REALLY push myself 5 days a week for an hour to an hour and a half and I have competed the last 3 years in bodybuilding competitions. I can cycle/treadmill at a nice brisk pace easily enough for 15min maybe longer but I've never really tested it much 'cause I hate cardio, I mainly only do it when I'm preparing for a competition to cut down some fat and help get my breathing up to speed to handle the posing onstage. And I do all this without oxygen, granted I am of the belief that because of me pushing myself so hard all the time my body has somehow adapted to be able to cope despite the low PFT's. I'm kinda wondering if this doc knows what to look for on the PFT's for basing the extent of lung damage? The reason I say this is because like what miesl mentioned, my FEV1 (which is what is used to base the extent of lung damage) was last time I checked 38-40% but my FVC was quite high like 70's or something, if I remember right. So if they were reading from that in error then I wouldn't have much to worry about. Definitely I'd say get a doctor that's an expert in CF to evaluate you. And maybe you can ask them for a copy of the print out and post what's on it and someone hear can help you out with understanding it better.

 

[lilmac7]

<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 have to second this! I'm 26 and am at 38-40% PFT, I work out alot (weight lifting) and push myself hard, I mean REALLY push myself 5 days a week for an hour to an hour and a half and I have competed the last 3 years in bodybuilding competitions. I can cycle/treadmill at a nice brisk pace easily enough for 15min maybe longer but I've never really tested it much 'cause I hate cardio, I mainly only do it when I'm preparing for a competition to cut down some fat and help get my breathing up to speed to handle the posing onstage. And I do all this without oxygen, granted I am of the belief that because of me pushing myself so hard all the time my body has somehow adapted to be able to cope despite the low PFT's. I'm kinda wondering if this doc knows what to look for on the PFT's for basing the extent of lung damage? The reason I say this is because like what miesl mentioned, my FEV1 (which is what is used to base the extent of lung damage) was last time I checked 38-40% but my FVC was quite high like 70's or something, if I remember right. So if they were reading from that in error then I wouldn't have much to worry about. Definitely I'd say get a doctor that's an expert in CF to evaluate you. And maybe you can ask them for a copy of the print out and post what's on it and someone hear can help you out with understanding it better.

 

[lilmac7]

<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 have to second this! I'm 26 and am at 38-40% PFT, I work out alot (weight lifting) and push myself hard, I mean REALLY push myself 5 days a week for an hour to an hour and a half and I have competed the last 3 years in bodybuilding competitions. I can cycle/treadmill at a nice brisk pace easily enough for 15min maybe longer but I've never really tested it much 'cause I hate cardio, I mainly only do it when I'm preparing for a competition to cut down some fat and help get my breathing up to speed to handle the posing onstage. And I do all this without oxygen, granted I am of the belief that because of me pushing myself so hard all the time my body has somehow adapted to be able to cope despite the low PFT's. I'm kinda wondering if this doc knows what to look for on the PFT's for basing the extent of lung damage? The reason I say this is because like what miesl mentioned, my FEV1 (which is what is used to base the extent of lung damage) was last time I checked 38-40% but my FVC was quite high like 70's or something, if I remember right. So if they were reading from that in error then I wouldn't have much to worry about. Definitely I'd say get a doctor that's an expert in CF to evaluate you. And maybe you can ask them for a copy of the print out and post what's on it and someone hear can help you out with understanding it better.

 

[lilmac7]

<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 have to second this! I'm 26 and am at 38-40% PFT, I work out alot (weight lifting) and push myself hard, I mean REALLY push myself 5 days a week for an hour to an hour and a half and I have competed the last 3 years in bodybuilding competitions. I can cycle/treadmill at a nice brisk pace easily enough for 15min maybe longer but I've never really tested it much 'cause I hate cardio, I mainly only do it when I'm preparing for a competition to cut down some fat and help get my breathing up to speed to handle the posing onstage. And I do all this without oxygen, granted I am of the belief that because of me pushing myself so hard all the time my body has somehow adapted to be able to cope despite the low PFT's. I'm kinda wondering if this doc knows what to look for on the PFT's for basing the extent of lung damage? The reason I say this is because like what miesl mentioned, my FEV1 (which is what is used to base the extent of lung damage) was last time I checked 38-40% but my FVC was quite high like 70's or something, if I remember right. So if they were reading from that in error then I wouldn't have much to worry about. Definitely I'd say get a doctor that's an expert in CF to evaluate you. And maybe you can ask them for a copy of the print out and post what's on it and someone hear can help you out with understanding it better.
<br />
<br />

 

[shamrock]

To answer your question, I'm in my twenties and have had a lung transplant.

 

[shamrock]

To answer your question, I'm in my twenties and have had a lung transplant.

 

[shamrock]

To answer your question, I'm in my twenties and have had a lung transplant.

 

[shamrock]

To answer your question, I'm in my twenties and have had a lung transplant.

 

[shamrock]

To answer your question, I'm in my twenties and have had a lung transplant.

 

[CountryGirl]

My name is Anna and I'm 21. I just got my lung transplant July 25 of last year. But definitely not everyone in their twenties are that sick. My sister is 18 and at the rate shes going, she wont need a transplant for many years...of course I do know things can change in an instant as thats what happened to me.
Definitely find a new doctor, she seems to be thinking like we're still in the 90s.

 

[CountryGirl]

My name is Anna and I'm 21. I just got my lung transplant July 25 of last year. But definitely not everyone in their twenties are that sick. My sister is 18 and at the rate shes going, she wont need a transplant for many years...of course I do know things can change in an instant as thats what happened to me.
Definitely find a new doctor, she seems to be thinking like we're still in the 90s.

 

[CountryGirl]

My name is Anna and I'm 21. I just got my lung transplant July 25 of last year. But definitely not everyone in their twenties are that sick. My sister is 18 and at the rate shes going, she wont need a transplant for many years...of course I do know things can change in an instant as thats what happened to me.
Definitely find a new doctor, she seems to be thinking like we're still in the 90s.

 

[CountryGirl]

My name is Anna and I'm 21. I just got my lung transplant July 25 of last year. But definitely not everyone in their twenties are that sick. My sister is 18 and at the rate shes going, she wont need a transplant for many years...of course I do know things can change in an instant as thats what happened to me.
Definitely find a new doctor, she seems to be thinking like we're still in the 90s.

 

[CountryGirl]

My name is Anna and I'm 21. I just got my lung transplant July 25 of last year. But definitely not everyone in their twenties are that sick. My sister is 18 and at the rate shes going, she wont need a transplant for many years...of course I do know things can change in an instant as thats what happened to me.
<br />Definitely find a new doctor, she seems to be thinking like we're still in the 90s.

 

[Alys1987]

I was really healthy when I was younger.I was only hospitalised 3 or 4 times and all but one were for stomach problems.

I had meconiumelias when I was born and had surgery for that and then when I was 10 I had another blockage and had another surgery.

I was fine for years until last year when I was admitted in September for severe respitory distress.I was coughing up blood,My PFTS were 20%,My oxygen was in the 80's and I weighed 98 lbs.

My PFTS are now in the 40's and range anywhere from 40 to 60%.

My problem is with plugs.I have tons of them in my lower lungs and I just got out of the hospital a month ago and they rearranged somethings in my lineup tp help with that.

I'm supposed to walk alot,I have to do accapella after every treatment and when I'm done exercising and I'm not allowed to lay float anymore unless I'm going to bed because that allows the mucus to stick to my lungs more.

I know I'm worse now then when I was younger.

Every person with CF is differant.There can be some who have mild cases,and there cann be some with severe cases.There can be some who were really healthy when they were younger and are'nt as healthy now,and there can be some who were very sick when they were younger and are more healthy now.

 

[Alys1987]

I was really healthy when I was younger.I was only hospitalised 3 or 4 times and all but one were for stomach problems.

I had meconiumelias when I was born and had surgery for that and then when I was 10 I had another blockage and had another surgery.

I was fine for years until last year when I was admitted in September for severe respitory distress.I was coughing up blood,My PFTS were 20%,My oxygen was in the 80's and I weighed 98 lbs.

My PFTS are now in the 40's and range anywhere from 40 to 60%.

My problem is with plugs.I have tons of them in my lower lungs and I just got out of the hospital a month ago and they rearranged somethings in my lineup tp help with that.

I'm supposed to walk alot,I have to do accapella after every treatment and when I'm done exercising and I'm not allowed to lay float anymore unless I'm going to bed because that allows the mucus to stick to my lungs more.

I know I'm worse now then when I was younger.

Every person with CF is differant.There can be some who have mild cases,and there cann be some with severe cases.There can be some who were really healthy when they were younger and are'nt as healthy now,and there can be some who were very sick when they were younger and are more healthy now.

 

[Alys1987]

I was really healthy when I was younger.I was only hospitalised 3 or 4 times and all but one were for stomach problems.

I had meconiumelias when I was born and had surgery for that and then when I was 10 I had another blockage and had another surgery.

I was fine for years until last year when I was admitted in September for severe respitory distress.I was coughing up blood,My PFTS were 20%,My oxygen was in the 80's and I weighed 98 lbs.

My PFTS are now in the 40's and range anywhere from 40 to 60%.

My problem is with plugs.I have tons of them in my lower lungs and I just got out of the hospital a month ago and they rearranged somethings in my lineup tp help with that.

I'm supposed to walk alot,I have to do accapella after every treatment and when I'm done exercising and I'm not allowed to lay float anymore unless I'm going to bed because that allows the mucus to stick to my lungs more.

I know I'm worse now then when I was younger.

Every person with CF is differant.There can be some who have mild cases,and there cann be some with severe cases.There can be some who were really healthy when they were younger and are'nt as healthy now,and there can be some who were very sick when they were younger and are more healthy now.

 

[Alys1987]

I was really healthy when I was younger.I was only hospitalised 3 or 4 times and all but one were for stomach problems.

I had meconiumelias when I was born and had surgery for that and then when I was 10 I had another blockage and had another surgery.

I was fine for years until last year when I was admitted in September for severe respitory distress.I was coughing up blood,My PFTS were 20%,My oxygen was in the 80's and I weighed 98 lbs.

My PFTS are now in the 40's and range anywhere from 40 to 60%.

My problem is with plugs.I have tons of them in my lower lungs and I just got out of the hospital a month ago and they rearranged somethings in my lineup tp help with that.

I'm supposed to walk alot,I have to do accapella after every treatment and when I'm done exercising and I'm not allowed to lay float anymore unless I'm going to bed because that allows the mucus to stick to my lungs more.

I know I'm worse now then when I was younger.

Every person with CF is differant.There can be some who have mild cases,and there cann be some with severe cases.There can be some who were really healthy when they were younger and are'nt as healthy now,and there can be some who were very sick when they were younger and are more healthy now.

 

[Alys1987]

I was really healthy when I was younger.I was only hospitalised 3 or 4 times and all but one were for stomach problems.
<br />
<br />I had meconiumelias when I was born and had surgery for that and then when I was 10 I had another blockage and had another surgery.
<br />
<br />I was fine for years until last year when I was admitted in September for severe respitory distress.I was coughing up blood,My PFTS were 20%,My oxygen was in the 80's and I weighed 98 lbs.
<br />
<br />My PFTS are now in the 40's and range anywhere from 40 to 60%.
<br />
<br />My problem is with plugs.I have tons of them in my lower lungs and I just got out of the hospital a month ago and they rearranged somethings in my lineup tp help with that.
<br />
<br />I'm supposed to walk alot,I have to do accapella after every treatment and when I'm done exercising and I'm not allowed to lay float anymore unless I'm going to bed because that allows the mucus to stick to my lungs more.
<br />
<br />I know I'm worse now then when I was younger.
<br />
<br />Every person with CF is differant.There can be some who have mild cases,and there cann be some with severe cases.There can be some who were really healthy when they were younger and are'nt as healthy now,and there can be some who were very sick when they were younger and are more healthy now.