Mixing with other CFers.. thoughts and opinions?

X

xxlilmissmorrisseyxx

New member
Just wondering how people feel about mixing with other poeple with CF. I have a lot of CF friends,, one that lives just down the road from me and we meet up all the time and hang out. I don't care about the infection risks,, and neither does he..
 
D

Dank

Guest
You should consult your doctor. This is a very bad idea that will likely lead to serious infections
 
E

erock77

Member
As someone who was alive and mingling w/ CFers before the days of isolation, it's not that dire. However you should be wary of any new bugs you guys culture or when you get sick. If one of you gets MRSA or cepacia keep your distance. And maybe keep the physical contact low. As a kid I would be hospitalized 3-5x per year, and they'd often put the CFer's in a big room w/ 4-6 CF patients, or we got our own. But we all hung out. I even dated a girl w/ CF when I was 17 that I met in the hospital. Not recommended, but I know younger CFers are freaked out by the thought of mingling w/ other CFers. It's not necessarily a good idea, but just take some precautions, sanitize your hands, etc. It can be pretty great hanging w/ someone dealing w/ similar issues. I know many who go by the 3-foot rule, try and stay 3-feet away, but keep in mind the CFF has gotten much stricter w/ their isolation policies. So just be careful, but enjoy yourself too.
 
I

imported_Momto2

New member
I'm sorry, but you couldnt pay be enough to be in a room with another CF adult without a mask on and a bottle of hand sanitizer nearby. I grew up with other CFers around, before the strict isolation policies, but my parents and doctor strongly urged me to stay away from the other kids with CF. I have watched (from a distance) all the other kids pass around the nasty bugs and then pass on. I'm sorry this sounds so harsh, as much as I disagree with the CFF on some of their policies, they have made the right call on the "keep your distance" from other CFers. My parents never let me attend CF events as a kid or go to CF clinics. I think that saved my life. I would strongly suggest listening to erock77's advice. Now that there are precautions at the clinics and events I will attend (masked and gloved), but the underlying advice is still sound.
 
S

SunnyBunny9600

New member
Oi

xxlilmissmorrisseyxx said:
Just wondering how people feel about mixing with other poeple with CF. I have a lot of CF friends,, one that lives just down the road from me and we meet up all the time and hang out. I don't care about the infection risks,, and neither does he..
Click to expand...
I had a friend with CF and I was with him every Sunday, Wednesday, and Thursday. we were just careful like we always stayed at least 3 feet away from each other and if one of us was sick we would try to stay away from each other. My point is I don't think it really matters as long as you're both healthy.
:p
 
B

Bellithorp

New member
let me just say how I live by what my daughters doctor tells me and his idea is NO it is a bad idea.

I was able to connect with a few mothers of cf kids in my area and lets just say how I was completely bullied by being OVERPROTECTIVE and not letting my daughter interact face to face with the other cf kids. They thought It would be a great idea to have slumber and pool parties. When I told them I have been advised by the doctor not to I was completely shunned. I don't feel like I know 100% about the condition to take the risk with my daughter :(
 
P

Printer

Active member
In the 1960's, CF kids would go to summer camp and sleep in large rooms. As a result infections were exchanged between these kids. Twenty years ago we had the "three foot rule", CF Patients could not be within 3 feet of each other, now that rule has been extended to six feet. I was dx in 1987, at that time CF Patients and families would attend the Cystic Fibrosis Annual Dinner. Today, only one (1) CF Patient is allowed to attend this dinner, which is held in a function hall that will serve almost 700 people.

Your Doctor is WRONG when he tells you that "slumber and pool parties is a bad idea". It is forbidden. Don't allow your DD to violate the six foot rule.

Bill
 
K

kenna2

Member
CF patients can spread germs to each other. Which makes the stuff growing in our lungs more difficult to treat and more prone to infections. We SHOULD NOT be in contact with each other. Masks must be worn at all times if we are sick or healthy around other CF patients or in hospitals / clinics. When in doubt, stay away. However, online interaction with other CF patients is encouraged. It's nice to be in contact with people who are dealing with the same thing you are and are a great support system to each other.
 
E

Edge

New member
I am an identical twin, and we both have CF (delta F508). Needless to say neither of us stay 3 feet from each other at all times, nor do we avoid eachother when we are sick. Now, this may be a different case, as we grew up together and have always been decently healthy (him more so than I) throughout our lives. So I'm not really sure if that's a difference in immune system strength, or genetics, but I think you'd be okay.
 
R

rb1973

Guest
I understand the avoidance of intentional prolonged exposure to another CFer, but how do you know the person standing in line in front or behind you, next to you on the subway, bus, plane or ferry, walking next to you, in the elevator next to you, seated at the next table to you in a restaurant isn't me or someone else with CF? Do you wear a mask every where you go? Because I don't and won't. I grudgingly do it at the CF doctor's office - and I think its overkill because the rooms are not negative pressure rooms. For the first 42 years of my life there were no masks in the office, yet here I am no worse for the wear. I'm just saying, if you were next to me, I dont have "CF" tattooed on my forehead and you wouldn't know I have it without me telling you, which I won't.
 
P

Printer

Active member
rb: I cannot control the people that I come into contact with each day but I can control my knowingly coming in contact with another CF Patient. You need to google, Burkholders Cepia (sp).
 
You must log in or register to reply here.
Top