Looking for information/support with this unfortunate diagnosis. <br>I am pretty wrecked over it. <br><br>Are things any brighter for a 16yo CF patient in the year 2011? The research I have seen (2008/2009) doesnt put survival much past 5 years. <div><br><br>Anyone here been with cenocepacia for long?</div>
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
cenocepacia or b.cepacia III
- Thread starter revofev
- Start date
Looking for information/support with this unfortunate diagnosis.<br>I am pretty wrecked over it.<br><br>Are things any brighter for a 16yo CF patient in the year 2011? The research I have seen (2008/2009) doesnt put survival much past 5 years.<br><br>Anyone here been with cenocepacia for long?
Looking for information/support with this unfortunate diagnosis.<br>I am pretty wrecked over it.<br><br>Are things any brighter for a 16yo CF patient in the year 2011? The research I have seen (2008/2009) doesnt put survival much past 5 years.<br><br>Anyone here been with cenocepacia for long?
M
moxie1
Guest
<P>I just sent you a pm.</P>
<P> </P>
<P>I've had it for 20 years! My FEV1 is still 68% and I'm a DDF08.Praise God!!!!</P>
<P> </P>
<P>I've had it for 20 years! My FEV1 is still 68% and I'm a DDF08.Praise God!!!!</P>
M
moxie1
Guest
<P>I just sent you a pm.</P>
<P></P>
<P>I've had it for 20 years! My FEV1 is still 68% and I'm a DDF08.Praise God!!!!</P>
<P></P>
<P>I've had it for 20 years! My FEV1 is still 68% and I'm a DDF08.Praise God!!!!</P>
M
moxie1
Guest
<P>I just sent you a pm.</P>
<P></P>
<P>I've had it for 20 years! My FEV1 is still 68% and I'm a DDF08.<BR>Praise God!!!!</P>
<P></P>
<P>I've had it for 20 years! My FEV1 is still 68% and I'm a DDF08.<BR>Praise God!!!!</P>
markinohio
New member
I'm 42 and have cenocepacia. Not sure how long I've had it, probably about 5-10 years. My FEV1 is in the mid thirties, but not sure if that's cepacia related or just getting older related. I don't put much thought into survival statistcis because everyone is different. I wasn't supposed to live past age five and now I'm almost 43.
Mark
Mark
markinohio
New member
I'm 42 and have cenocepacia. Not sure how long I've had it, probably about 5-10 years. My FEV1 is in the mid thirties, but not sure if that's cepacia related or just getting older related. I don't put much thought into survival statistcis because everyone is different. I wasn't supposed to live past age five and now I'm almost 43.
Mark
Mark
markinohio
New member
I'm 42 and have cenocepacia. Not sure how long I've had it, probably about 5-10 years. My FEV1 is in the mid thirties, but not sure if that's cepacia related or just getting older related. I don't put much thought into survival statistcis because everyone is different. I wasn't supposed to live past age five and now I'm almost 43.
<br />
<br />Mark
<br />
<br />Mark
L
littlemisssilly
Guest
I have had b.cepacia (III) for 15yrs now. Thankfully, I haven't experienced any major decline with it. In fact, my fev 1 is better now than when I was diagnosed due to being compliant with treatment and exercise. My fev1 stays around high 80's, I'm 34 and have even had a baby without any complications. You'll just have to wait and see how the cepacia affects you, only time will tell. Hopefully, u will not experience any sudden decline in health.
L
littlemisssilly
Guest
I have had b.cepacia (III) for 15yrs now. Thankfully, I haven't experienced any major decline with it. In fact, my fev 1 is better now than when I was diagnosed due to being compliant with treatment and exercise. My fev1 stays around high 80's, I'm 34 and have even had a baby without any complications. You'll just have to wait and see how the cepacia affects you, only time will tell. Hopefully, u will not experience any sudden decline in health.
L
littlemisssilly
Guest
I have had b.cepacia (III) for 15yrs now. Thankfully, I haven't experienced any major decline with it. In fact, my fev 1 is better now than when I was diagnosed due to being compliant with treatment and exercise. My fev1 stays around high 80's, I'm 34 and have even had a baby without any complications. You'll just have to wait and see how the cepacia affects you, only time will tell. Hopefully, u will not experience any sudden decline in health.
mamaScarlett
Active member
Do you know how or where the patient may have picked this bug up? Myself, I've had b.Cep for 15 yrs, likely got it from a hosp in the old days when they put Cfers in the same room. it not affected my cf much.
mamaScarlett
Active member
Do you know how or where the patient may have picked this bug up? Myself, I've had b.Cep for 15 yrs, likely got it from a hosp in the old days when they put Cfers in the same room. it not affected my cf much.
mamaScarlett
Active member
Do you know how or where the patient may have picked this bug up? Myself, I've had b.Cep for 15 yrs, likely got it from a hosp in the old days when they put Cfers in the same room. it not affected my cf much.