My name's Jan and if you have cepacia, if we haven't 'talked' we have probably at least read each other's posts. My husband is 45, w/cepacia and on the list for a double lung tx. This is where we are at: Every antibiotic now tests resistant, including synergy tests from NY. (Except meropenem, of which they just gave him a larger dose and he had a rash so they stopped it.). They are now sending his cultures to Ottawa for triple synergy testing. Basically, they are saying (or trying actually not to tell us) they have no options, or only drastic options that they would only try if he was bad enough to be on a ventilator because of the 'risk vs. benefit.' It is as if they are going to cross their fingers and hope he coasts into the tx in time. Well, that's not good enough for me (besides txing w/cepacia has its own set of challenges).
I know they can't give us options that aren't available, but I am looking for more information and support. It seems the main way the CF community is fighting cepacia, is by relying on eliminating the contact with infected CFer's, which makes sense, obviously. But on the other hand, cepacia is prevalent in the environment (in the hospitals, in the ground, rotten onions, even in the water on the space shuttle) so this threat is not going to go away. But what I want to know is what is the CF community doing to help those already infected? I know U of MI types. I know Columbia does synergy. But who else does anything? Is there one center that specializes in cepacia? Is there some dr. heading the fight? When I surf the web it seems there really is nothing new, other than occasional updated (depressing) statistics or a study or two looking at all the strains and their differences, which is probably fundamental to any treatment, but still, not particularly promising for treatments in the near future. I am not involved with the CF Foundation, so maybe you are aware of something substantial they are doing that you can share with me. I realize that only about 4% of the CF population in US has cepacia, and that fact alone might not result in an incentive to devote time/enery/money to cepacia research. What about other countries? Canada?
Is there some cepacia support group or newsletter to keep us informed of current treatments and developments? Or are we really the ones leading the way, and they are learning from us how to help those that follow? Do we have someone representing us at the CF foundation? Would that be helpful? Is cepacia the focus of your own medical care and treatment? Do you know of other CF chat rooms or message boards or groups where others with cepacia are that do not come on this message board? If you want to email me instead of posting, reach me at standinginthegap4Greg@hotmail.com. If there is interest, maybe we can stay in touch with each other, sharing what we know and what's being done for us.
Of course, he does pulmozyme, TOBI, and colystin (nebs), and had been prescribed two iv antibiotics every flare up, which had gotten to be about every 6 - 8 weeks. We have never been ones to sit around - he's lived his life very proactive, fighting every step of the way. I am not ready to start sitting by and waiting for the inevitable. He has grown up living past all the 'median age' predictions, and I am planning on him to keep beating all the odds now. I am currently trying to get information on an article about txing with cepacia regarding the use of dextran & xylitol, but not having success at obtaining the info.
Sorry if this sounds intense or depressed or whatever. I guess I am! Thanks for all your input, and as always we wish all of you the best.
I know they can't give us options that aren't available, but I am looking for more information and support. It seems the main way the CF community is fighting cepacia, is by relying on eliminating the contact with infected CFer's, which makes sense, obviously. But on the other hand, cepacia is prevalent in the environment (in the hospitals, in the ground, rotten onions, even in the water on the space shuttle) so this threat is not going to go away. But what I want to know is what is the CF community doing to help those already infected? I know U of MI types. I know Columbia does synergy. But who else does anything? Is there one center that specializes in cepacia? Is there some dr. heading the fight? When I surf the web it seems there really is nothing new, other than occasional updated (depressing) statistics or a study or two looking at all the strains and their differences, which is probably fundamental to any treatment, but still, not particularly promising for treatments in the near future. I am not involved with the CF Foundation, so maybe you are aware of something substantial they are doing that you can share with me. I realize that only about 4% of the CF population in US has cepacia, and that fact alone might not result in an incentive to devote time/enery/money to cepacia research. What about other countries? Canada?
Is there some cepacia support group or newsletter to keep us informed of current treatments and developments? Or are we really the ones leading the way, and they are learning from us how to help those that follow? Do we have someone representing us at the CF foundation? Would that be helpful? Is cepacia the focus of your own medical care and treatment? Do you know of other CF chat rooms or message boards or groups where others with cepacia are that do not come on this message board? If you want to email me instead of posting, reach me at standinginthegap4Greg@hotmail.com. If there is interest, maybe we can stay in touch with each other, sharing what we know and what's being done for us.
Of course, he does pulmozyme, TOBI, and colystin (nebs), and had been prescribed two iv antibiotics every flare up, which had gotten to be about every 6 - 8 weeks. We have never been ones to sit around - he's lived his life very proactive, fighting every step of the way. I am not ready to start sitting by and waiting for the inevitable. He has grown up living past all the 'median age' predictions, and I am planning on him to keep beating all the odds now. I am currently trying to get information on an article about txing with cepacia regarding the use of dextran & xylitol, but not having success at obtaining the info.
Sorry if this sounds intense or depressed or whatever. I guess I am! Thanks for all your input, and as always we wish all of you the best.