Friend w/CF

sarabeth87 · May 27, 2010

I know I haven't been on here in a while (because I couldn't remember my password lol). Anyways, I have a question about hanging out with other CF patients. My brother & I both have CF, so we've never went by the 3' rule with each other. Now, however, we have made a new friend (I'll call him Dal) with CF. He's in the process of getting evaluated for a lung transplant. I have PA & MRSA and my brother has PA and Staph. Dal only has PA. Are there any other precautions we should take, other than the 3' rule and not being indoors? And another question...Dal said his FEV1 was around 13%. Mine is around 65% and my brother's is aroung 45%. I've always thought that with a lung function that low, you'd be bed-ridden or something. He said he's on O2 24/7. It just worries me because we were gonna ride 4-wheelers this weekend and I don't want him to get too tired or anything to happen while we are out there. He's 25, so I know he's a grown man, but I still worry. I've only met him one time for just a minute and I already feel a close connection with him and I can't stop thinking about him getting listed or even worse, not being able to get listed.

sarabeth87 · May 27, 2010

I know I haven't been on here in a while (because I couldn't remember my password lol). Anyways, I have a question about hanging out with other CF patients. My brother & I both have CF, so we've never went by the 3' rule with each other. Now, however, we have made a new friend (I'll call him Dal) with CF. He's in the process of getting evaluated for a lung transplant. I have PA & MRSA and my brother has PA and Staph. Dal only has PA. Are there any other precautions we should take, other than the 3' rule and not being indoors? And another question...Dal said his FEV1 was around 13%. Mine is around 65% and my brother's is aroung 45%. I've always thought that with a lung function that low, you'd be bed-ridden or something. He said he's on O2 24/7. It just worries me because we were gonna ride 4-wheelers this weekend and I don't want him to get too tired or anything to happen while we are out there. He's 25, so I know he's a grown man, but I still worry. I've only met him one time for just a minute and I already feel a close connection with him and I can't stop thinking about him getting listed or even worse, not being able to get listed.

sarabeth87 · May 27, 2010

I know I haven't been on here in a while (because I couldn't remember my password lol). Anyways, I have a question about hanging out with other CF patients. My brother & I both have CF, so we've never went by the 3' rule with each other. Now, however, we have made a new friend (I'll call him Dal) with CF. He's in the process of getting evaluated for a lung transplant. I have PA & MRSA and my brother has PA and Staph. Dal only has PA. Are there any other precautions we should take, other than the 3' rule and not being indoors? And another question...Dal said his FEV1 was around 13%. Mine is around 65% and my brother's is aroung 45%. I've always thought that with a lung function that low, you'd be bed-ridden or something. He said he's on O2 24/7. It just worries me because we were gonna ride 4-wheelers this weekend and I don't want him to get too tired or anything to happen while we are out there. He's 25, so I know he's a grown man, but I still worry. I've only met him one time for just a minute and I already feel a close connection with him and I can't stop thinking about him getting listed or even worse, not being able to get listed.

Mallymookcf · May 28, 2010

it is really unfortunate that c.f is one of those diseases that can spread danger to other cf-ers, because that is where i find the most compfort in other cf patients. They can relate in a way no one else can...even your closest friends and family just dont get it quite like a c.f patient. if it were not for cross-contamination scare i would hang out with all c.f-ers all the time!! haha! That is why this website is such a great idea! its being friends without getting each other sick. I actually have grown b-cepatia (pandorea) in a culture a year back...so i am banned from being around c.f patients even in the clinic. (I have to come on non-c.f. days) Unfortunately i have no advice any different from what it seems you aready know about cross contamination. You guys can talk on the phone,internet, etc... especially with his lung function so low, he may have bugs that have not cultured out that you dont know about, or vice-versa. i will keep you all in my prayers, and good luck to you and ur c.f buddy!
Lots of love
Mallory

Mallymookcf · May 28, 2010

it is really unfortunate that c.f is one of those diseases that can spread danger to other cf-ers, because that is where i find the most compfort in other cf patients. They can relate in a way no one else can...even your closest friends and family just dont get it quite like a c.f patient. if it were not for cross-contamination scare i would hang out with all c.f-ers all the time!! haha! That is why this website is such a great idea! its being friends without getting each other sick. I actually have grown b-cepatia (pandorea) in a culture a year back...so i am banned from being around c.f patients even in the clinic. (I have to come on non-c.f. days) Unfortunately i have no advice any different from what it seems you aready know about cross contamination. You guys can talk on the phone,internet, etc... especially with his lung function so low, he may have bugs that have not cultured out that you dont know about, or vice-versa. i will keep you all in my prayers, and good luck to you and ur c.f buddy!
Lots of love
Mallory

Mallymookcf · May 28, 2010

it is really unfortunate that c.f is one of those diseases that can spread danger to other cf-ers, because that is where i find the most compfort in other cf patients. They can relate in a way no one else can...even your closest friends and family just dont get it quite like a c.f patient. if it were not for cross-contamination scare i would hang out with all c.f-ers all the time!! haha! That is why this website is such a great idea! its being friends without getting each other sick. I actually have grown b-cepatia (pandorea) in a culture a year back...so i am banned from being around c.f patients even in the clinic. (I have to come on non-c.f. days) Unfortunately i have no advice any different from what it seems you aready know about cross contamination. You guys can talk on the phone,internet, etc... especially with his lung function so low, he may have bugs that have not cultured out that you dont know about, or vice-versa. i will keep you all in my prayers, and good luck to you and ur c.f buddy!
 Lots of love
 Mallory

Lance2020x · May 28, 2010

One option that will help is masks... it'll make it a little cumbersome to talk and such, but as your doctors probably wouldn't suggest hanging out, and you're doing it anyway, a mask would be a little touch of extra precaution.

I have the exact same problem, my brother has CF as well, and it makes you forget that other CFers are forbidden.... My very dearest friend I met through this website, we've been talking over email for years, and we talk about 'the day we hang out together', but we both know that probably won't ever happen :-(

Lance2020x · May 28, 2010

One option that will help is masks... it'll make it a little cumbersome to talk and such, but as your doctors probably wouldn't suggest hanging out, and you're doing it anyway, a mask would be a little touch of extra precaution.

I have the exact same problem, my brother has CF as well, and it makes you forget that other CFers are forbidden.... My very dearest friend I met through this website, we've been talking over email for years, and we talk about 'the day we hang out together', but we both know that probably won't ever happen :-(

Lance2020x · May 28, 2010

One option that will help is masks... it'll make it a little cumbersome to talk and such, but as your doctors probably wouldn't suggest hanging out, and you're doing it anyway, a mask would be a little touch of extra precaution.
 
 I have the exact same problem, my brother has CF as well, and it makes you forget that other CFers are forbidden.... My very dearest friend I met through this website, we've been talking over email for years, and we talk about 'the day we hang out together', but we both know that probably won't ever happen :-(

tlcquiltnut · May 28, 2010

All of us kids had CF. Growing up it wasn't a problem. Mike coughed and coughed I never got his bugs. Kerry the same thing. I have been around lots and lots of CF'ers and not had a problem. I have given lots of hugs and I am ok. But I agree, do not throw caution to the wind. Always be safe than sorry.
Oh, BTW, I will be 60 in November.

tlcquiltnut · May 28, 2010

All of us kids had CF. Growing up it wasn't a problem. Mike coughed and coughed I never got his bugs. Kerry the same thing. I have been around lots and lots of CF'ers and not had a problem. I have given lots of hugs and I am ok. But I agree, do not throw caution to the wind. Always be safe than sorry.
Oh, BTW, I will be 60 in November.

tlcquiltnut · May 28, 2010

All of us kids had CF. Growing up it wasn't a problem. Mike coughed and coughed I never got his bugs. Kerry the same thing. I have been around lots and lots of CF'ers and not had a problem. I have given lots of hugs and I am ok. But I agree, do not throw caution to the wind. Always be safe than sorry.
 Oh, BTW, I will be 60 in November.

sarabeth87 · May 30, 2010

Well we all hung out today and I'm glad that we did. For most of the day we followed the 3' rule, well actually the 6' rule. By the end of the day though we kinda didn't care anymore and rode in the same vehicle. I know we probably shouldn't have...Anyways, I have MRSA and Travis only has staph and so far he's never cultured MRSA and we're always around each other. We even share nebulizers sometimes.

sarabeth87 · May 30, 2010

Well we all hung out today and I'm glad that we did. For most of the day we followed the 3' rule, well actually the 6' rule. By the end of the day though we kinda didn't care anymore and rode in the same vehicle. I know we probably shouldn't have...Anyways, I have MRSA and Travis only has staph and so far he's never cultured MRSA and we're always around each other. We even share nebulizers sometimes.

sarabeth87 · May 30, 2010

Well we all hung out today and I'm glad that we did. For most of the day we followed the 3' rule, well actually the 6' rule. By the end of the day though we kinda didn't care anymore and rode in the same vehicle. I know we probably shouldn't have...Anyways, I have MRSA and Travis only has staph and so far he's never cultured MRSA and we're always around each other. We even share nebulizers sometimes.

sky · Jul 7, 2010

This is my first time writting in this I guess this is a newsletter. I was diagnosed at 21 and knew something was wrong,but never knew something this serious.I grew up on the streets of NYC and have been in the 12 step fellowship(N.A.) for the past 27 years. I was using illicet drugs until I was 27, had a pretty bad habit and smoked for about 18 years and then had to stop for apparent reasons. I I am now 55 and am now starting to do treatments. I am a skydiver,and bodybuilder. I did anything I want until I got the T.B.. I was on world record attemps and jumped using oxygen like the rest. We all need oxygen when jumping over 16000 feet. I have been in compitions and really never gave this disease any of the attention the doctors told had me to. I am now suffering with MRSA and TB,,,so guess what,, I am doing what the doctor tells me to now,cause I do not want to croak,but croaking is a reality and need to face the fact that I am probably comming to the end of a great life that I was fortunate to have been able to live. My wife tells me that I will probably out live her,, but in reality,, I do not think so.I am writting this cause I just can't figure this disease out.I am familar with many other types of diseases and understand them because they follow some kind of pattern,yet this disease is a tricky 1 for me. I always wonder why God gave me a break. I guess I haven't done the job I was sent here to do yet. Take care and keep up what it is you are doing, it seems to be working. It is always good to hear about someone older than I that also has this disease, so maybe with this new attitude,I may just beat this *****. Oh by the way,, my brother doesn't have this .

sky · Jul 7, 2010

This is my first time writting in this I guess this is a newsletter. I was diagnosed at 21 and knew something was wrong,but never knew something this serious.I grew up on the streets of NYC and have been in the 12 step fellowship(N.A.) for the past 27 years. I was using illicet drugs until I was 27, had a pretty bad habit and smoked for about 18 years and then had to stop for apparent reasons. I I am now 55 and am now starting to do treatments. I am a skydiver,and bodybuilder. I did anything I want until I got the T.B.. I was on world record attemps and jumped using oxygen like the rest. We all need oxygen when jumping over 16000 feet. I have been in compitions and really never gave this disease any of the attention the doctors told had me to. I am now suffering with MRSA and TB,,,so guess what,, I am doing what the doctor tells me to now,cause I do not want to croak,but croaking is a reality and need to face the fact that I am probably comming to the end of a great life that I was fortunate to have been able to live. My wife tells me that I will probably out live her,, but in reality,, I do not think so.I am writting this cause I just can't figure this disease out.I am familar with many other types of diseases and understand them because they follow some kind of pattern,yet this disease is a tricky 1 for me. I always wonder why God gave me a break. I guess I haven't done the job I was sent here to do yet. Take care and keep up what it is you are doing, it seems to be working. It is always good to hear about someone older than I that also has this disease, so maybe with this new attitude,I may just beat this *****. Oh by the way,, my brother doesn't have this .

sky · Jul 7, 2010

This is my first time writting in this I guess this is a newsletter. I was diagnosed at 21 and knew something was wrong,but never knew something this serious.I grew up on the streets of NYC and have been in the 12 step fellowship(N.A.) for the past 27 years. I was using illicet drugs until I was 27, had a pretty bad habit and smoked for about 18 years and then had to stop for apparent reasons. I I am now 55 and am now starting to do treatments. I am a skydiver,and bodybuilder. I did anything I want until I got the T.B.. I was on world record attemps and jumped using oxygen like the rest. We all need oxygen when jumping over 16000 feet. I have been in compitions and really never gave this disease any of the attention the doctors told had me to. I am now suffering with MRSA and TB,,,so guess what,, I am doing what the doctor tells me to now,cause I do not want to croak,but croaking is a reality and need to face the fact that I am probably comming to the end of a great life that I was fortunate to have been able to live. My wife tells me that I will probably out live her,, but in reality,, I do not think so.I am writting this cause I just can't figure this disease out.I am familar with many other types of diseases and understand them because they follow some kind of pattern,yet this disease is a tricky 1 for me. I always wonder why God gave me a break. I guess I haven't done the job I was sent here to do yet. Take care and keep up what it is you are doing, it seems to be working. It is always good to hear about someone older than I that also has this disease, so maybe with this new attitude,I may just beat this *****. Oh by the way,, my brother doesn't have this .

sky · Jul 7, 2010

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This is my first time writting in this I guess this is a newsletter. I was diagnosed at 21 and knew something was wrong,but never knew something this serious.I grew up on the streets of NYC and have been in the 12 step fellowship(N.A.) for the past 27 years. I was using illicet drugs until I was 27, had a pretty bad habbit and smoked for about 18 years and then had to stop for apparent reasons. I I am now 55 and am now starting to do treatments. I am a skydiver,and bodybuilder. I did anything I want until I got the T.B.. I was on world record attemps and jumped using oxygen like the rest. We all need oxygen when jumping over 16000 feet. I have been in compitions and really never gave this disease any of the attention the doctors told had me to. I am now suffering with MRSA and TB,,,so guess what,, I am doing what the doctor tells me to now,cause I do not want to croak,but croaking is a reality and need to face the fact that I am probably comming to the end of a great life that I was fortunate to have been able to live. My wife tells me that I will probably out live her,, but in reality,, I do not think so.I am writting this cause I just can't figure this disease out.I am familar with many other types of diseases and understand them because they follow some kind of pattern,yet this disease is a tricky 1 for me. I always wonder why God gave me a break. I guess I haven't done the job I was sent here to do yet. Take care and keep up what it is you are doing, it seems to be working. It is always good to hear about someone older than I that also has this disease, so maybe with this new attitude,I may just beat this

sky · Jul 7, 2010

Preview Message

This is my first time writting in this I guess this is a newsletter. I was diagnosed at 21 and knew something was wrong,but never knew something this serious.I grew up on the streets of NYC and have been in the 12 step fellowship(N.A.) for the past 27 years. I was using illicet drugs until I was 27, had a pretty bad habbit and smoked for about 18 years and then had to stop for apparent reasons. I I am now 55 and am now starting to do treatments. I am a skydiver,and bodybuilder. I did anything I want until I got the T.B.. I was on world record attemps and jumped using oxygen like the rest. We all need oxygen when jumping over 16000 feet. I have been in compitions and really never gave this disease any of the attention the doctors told had me to. I am now suffering with MRSA and TB,,,so guess what,, I am doing what the doctor tells me to now,cause I do not want to croak,but croaking is a reality and need to face the fact that I am probably comming to the end of a great life that I was fortunate to have been able to live. My wife tells me that I will probably out live her,, but in reality,, I do not think so.I am writting this cause I just can't figure this disease out.I am familar with many other types of diseases and understand them because they follow some kind of pattern,yet this disease is a tricky 1 for me. I always wonder why God gave me a break. I guess I haven't done the job I was sent here to do yet. Take care and keep up what it is you are doing, it seems to be working. It is always good to hear about someone older than I that also has this disease, so maybe with this new attitude,I may just beat this

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