Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Hi and welcome, I feel like I am the hostess today, but you will get a lot of information in this site. I think n knows of somebody who is doing research/treatment with B Cepacia/cf patients, you will hear from her, she is a big inspiration on this list. Love to you and your family, mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf > I'm the mom of two CF kids. 17 yr old daughter and 12 year old son. I just found out about this group and I'm looking forward to sharing information. > My 12 yr old cultures b. cepacia and is much sicker than my daughter. She cultures pseudomonas.....no b. cepaicia for her so far. My husband and I both work full time....the double insurance coverage is a must. Sometimes, I'm not sure how I can continue.....with 4-6 hospitalizations a year between the two kids. I'm very lucky to have a wonderful understanding employer. > I'd love to hear from anyone with b. cepacia experience. We are quite concerned about the turn it may take. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Welcome to the group. You sound really busy. I am glad that you have an understanding employer. It must be a small company. My grand daughter, Abby, has cf. She is 18 months old. I hope that you enjoy this group. Gale > I'm the mom of two CF kids. 17 yr old daughter and 12 year old son. I just found out about this group and I'm looking forward to sharing information. > My 12 yr old cultures b. cepacia and is much sicker than my daughter. She cultures pseudomonas.....no b. cepaicia for her so far. My husband and I both work full time....the double insurance coverage is a must. Sometimes, I'm not sure how I can continue.....with 4-6 hospitalizations a year between the two kids. I'm very lucky to have a wonderful understanding employer. > I'd love to hear from anyone with b. cepacia experience. We are quite concerned about the turn it may take. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 hi, welcome, i also have 2 kids with cf, I have expirience with cepacia, im not gonna lie to you..... its not good, it will decline the health of your daughter! hopefully the docs will treat the cepacia vigorusly! my Daughter Noelle, died recently, but the last 6 months before she died , there was no cepacia, it was so marginal that it didnt show up on the tests. im sorry to be so honest. but what i did was, look up all kinds of info on the internet about cepacia! lots of cfers have it. and they are now doing transplants on people with cepacia. this is a sucky disease, both cf and cepacia!! i wish you all the luck in the world. Maureen mom of 3,,,2 with cf,, Noelle forever 20 Maureen----->-@ >From: Aggiedonna@... >Reply-To: cfparents >To: cfparents >Subject: new subscriber..... >Date: Mon, 11 Aug 2003 13:56:56 -0400 > >I'm the mom of two CF kids. 17 yr old daughter and 12 year old son. I >just found out about this group and I'm looking forward to sharing >information. >My 12 yr old cultures b. cepacia and is much sicker than my daughter. She >cultures pseudomonas.....no b. cepaicia for her so far. My husband and I >both work full time....the double insurance coverage is a must. Sometimes, >I'm not sure how I can continue.....with 4-6 hospitalizations a year >between the two kids. I'm very lucky to have a wonderful understanding >employer. >I'd love to hear from anyone with b. cepacia experience. We are quite >concerned about the turn it may take. > > > > >------------------------------------------- >The opinions and information exchanged on this list should IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >TREATMENTS. > >------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Maureen you are so right this disease sucks! mom of a 10 wcf, Venanzio 7 nocf, Pepe 7 nocf > hi, welcome, i also have 2 kids with cf, I have expirience with cepacia, im > not gonna lie to you..... its not good, it will decline the health of your > daughter! hopefully the docs will treat the cepacia vigorusly! > my Daughter Noelle, died recently, but the last 6 months before she died , > there was no cepacia, it was so marginal that it didnt show up on the tests. > im sorry to be so honest. but what i did was, look up all kinds of info on > the internet about cepacia! lots of cfers have it. and they are now doing > transplants on people with cepacia. > this is a sucky disease, both cf and cepacia!! i wish you all the luck in > the world. > Maureen mom of 3,,,2 with cf,, Noelle forever 20 > > > > Maureen----->-@ > > > > > > >From: Aggiedonna@a... > >Reply-To: cfparents > >To: cfparents > >Subject: new subscriber..... > >Date: Mon, 11 Aug 2003 13:56:56 -0400 > > > >I'm the mom of two CF kids. 17 yr old daughter and 12 year old son. I > >just found out about this group and I'm looking forward to sharing > >information. > >My 12 yr old cultures b. cepacia and is much sicker than my daughter. She > >cultures pseudomonas.....no b. cepaicia for her so far. My husband and I > >both work full time....the double insurance coverage is a must. Sometimes, > >I'm not sure how I can continue.....with 4-6 hospitalizations a year > >between the two kids. I'm very lucky to have a wonderful understanding > >employer. > >I'd love to hear from anyone with b. cepacia experience. We are quite > >concerned about the turn it may take. > > > > > > > > > >------------------------------------------- > >The opinions and information exchanged on this list should IN NO WAY > >be construed as medical advice. > > > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > >TREATMENTS. > > > >------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
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