How long?

[Grendel]

I am having a mild dispute with a fellow CFer, and we disagree on the numbers, so I though we should take a survey from the CF community...

How long would it take a CFer to succumb to the disease without any breathing medication, if you had FEV1 of 90%, 65%, and 45%? (three different answers sought)

Thanks.
Grendel

 

[Grendel]

I am having a mild dispute with a fellow CFer, and we disagree on the numbers, so I though we should take a survey from the CF community...

How long would it take a CFer to succumb to the disease without any breathing medication, if you had FEV1 of 90%, 65%, and 45%? (three different answers sought)

Thanks.
Grendel

 

[Grendel]

I am having a mild dispute with a fellow CFer, and we disagree on the numbers, so I though we should take a survey from the CF community...

How long would it take a CFer to succumb to the disease without any breathing medication, if you had FEV1 of 90%, 65%, and 45%? (three different answers sought)

Thanks.
Grendel

 

[Emily65Roses]

That's a really impossible question. It would depend on what bacteria they grew, what environment they lived in, what condition the rest of their body was in (weight, etc). Like if the 90% has cepacia and the 45% only grows a little pseudomonas, the 90% may go faster. It all depends.

I couldn't give you a guess, personally. Best I can say is that the 45% would probably go fastest, then the 65%, then the 90% (though of course, as I said, it depends heavily on several things, including bacteria grown). But that's, for the most part, common sense, and I'm sure you already thought that much.

 

[Emily65Roses]

That's a really impossible question. It would depend on what bacteria they grew, what environment they lived in, what condition the rest of their body was in (weight, etc). Like if the 90% has cepacia and the 45% only grows a little pseudomonas, the 90% may go faster. It all depends.

I couldn't give you a guess, personally. Best I can say is that the 45% would probably go fastest, then the 65%, then the 90% (though of course, as I said, it depends heavily on several things, including bacteria grown). But that's, for the most part, common sense, and I'm sure you already thought that much.

 

[Emily65Roses]

That's a really impossible question. It would depend on what bacteria they grew, what environment they lived in, what condition the rest of their body was in (weight, etc). Like if the 90% has cepacia and the 45% only grows a little pseudomonas, the 90% may go faster. It all depends.

I couldn't give you a guess, personally. Best I can say is that the 45% would probably go fastest, then the 65%, then the 90% (though of course, as I said, it depends heavily on several things, including bacteria grown). But that's, for the most part, common sense, and I'm sure you already thought that much.

 

[NoExcuses]

IF you had 3 different CFers with FEV1 at 90%, they would all decline at different rates.

Same with 60% and 45%.

There isn't that much control over this disease..... progression varies with each person tremendously.....

 

[NoExcuses]

IF you had 3 different CFers with FEV1 at 90%, they would all decline at different rates.

Same with 60% and 45%.

There isn't that much control over this disease..... progression varies with each person tremendously.....

 

[NoExcuses]

IF you had 3 different CFers with FEV1 at 90%, they would all decline at different rates.

Same with 60% and 45%.

There isn't that much control over this disease..... progression varies with each person tremendously.....

 

[mom2lillian]

I agree it varies tremendously even though mutatins classes arent the end all be alls some hope for I went 21 years iwth no treatments I knwo I am a rarity but it just shows there are extremes as others do everythign right and never make it that old. It also depends alot IMO on nutritional status. I hope this is not a debate because someone is thinking of doing it.

 

[mom2lillian]

I agree it varies tremendously even though mutatins classes arent the end all be alls some hope for I went 21 years iwth no treatments I knwo I am a rarity but it just shows there are extremes as others do everythign right and never make it that old. It also depends alot IMO on nutritional status. I hope this is not a debate because someone is thinking of doing it.

 

[mom2lillian]

I agree it varies tremendously even though mutatins classes arent the end all be alls some hope for I went 21 years iwth no treatments I knwo I am a rarity but it just shows there are extremes as others do everythign right and never make it that old. It also depends alot IMO on nutritional status. I hope this is not a debate because someone is thinking of doing it.

 

[Ricky123]

medications not that important you could still live a longish life if you never did ya medications and nebulisers ie only started taking nebulisers when i was 18 and my fev 1 was pretty good up until then in the mid 80s however physio is a differnt thing i reckon if you dont do any physio ya go relativly quick ie for a person whose fev 1is in the 90s or 60s or 40s i reckon if any of these stop doing phsio completly they be dead within 10 to 15 years in the majority of cases ie i found when i miss just one day the amount of stuff i bring up is shocking

 

[Ricky123]

medications not that important you could still live a longish life if you never did ya medications and nebulisers ie only started taking nebulisers when i was 18 and my fev 1 was pretty good up until then in the mid 80s however physio is a differnt thing i reckon if you dont do any physio ya go relativly quick ie for a person whose fev 1is in the 90s or 60s or 40s i reckon if any of these stop doing phsio completly they be dead within 10 to 15 years in the majority of cases ie i found when i miss just one day the amount of stuff i bring up is shocking

 

[Ricky123]

medications not that important you could still live a longish life if you never did ya medications and nebulisers ie only started taking nebulisers when i was 18 and my fev 1 was pretty good up until then in the mid 80s however physio is a differnt thing i reckon if you dont do any physio ya go relativly quick ie for a person whose fev 1is in the 90s or 60s or 40s i reckon if any of these stop doing phsio completly they be dead within 10 to 15 years in the majority of cases ie i found when i miss just one day the amount of stuff i bring up is shocking

 

[Ricky123]

medications not that important you could still live a longish life if you never did ya medications and nebulisers ie only started taking nebulisers when i was 18 and my fev 1 was pretty good up until then in the mid 80s however physio is a differnt thing i reckon if you dont do any physio ya go relativly quick ie for a person whose fev 1is in the 90s or 60s or 40s i reckon if any of these stop doing phsio completly they be dead within 10 to 15 years in the majority of cases ie i found when i miss just one day the amount of stuff i bring up is shocking

 

[Ricky123]

medications not that important you could still live a longish life if you never did ya medications and nebulisers ie only started taking nebulisers when i was 18 and my fev 1 was pretty good up until then in the mid 80s however physio is a differnt thing i reckon if you dont do any physio ya go relativly quick ie for a person whose fev 1is in the 90s or 60s or 40s i reckon if any of these stop doing phsio completly they be dead within 10 to 15 years in the majority of cases ie i found when i miss just one day the amount of stuff i bring up is shocking

 

[Ricky123]

medications not that important you could still live a longish life if you never did ya medications and nebulisers ie only started taking nebulisers when i was 18 and my fev 1 was pretty good up until then in the mid 80s however physio is a differnt thing i reckon if you dont do any physio ya go relativly quick ie for a person whose fev 1is in the 90s or 60s or 40s i reckon if any of these stop doing phsio completly they be dead within 10 to 15 years in the majority of cases ie i found when i miss just one day the amount of stuff i bring up is shocking

 

[moxie1]

Are one of you planning on stopping your meds and treatment? I guess I'm wondering why you were discussing this in the first place...doens't seem like a healthy train of thought.

 

[moxie1]

Are one of you planning on stopping your meds and treatment? I guess I'm wondering why you were discussing this in the first place...doens't seem like a healthy train of thought.