"Bugs" transmission between cf patients

D

Diane

New member
"Bugs

well, years ago (26 to be exact) when i was first diagnosed with diabetes i spent a lot of time in pediatrics at a childrens hospital and met several cf patients. Some i became friends with. I also had more than one cf patient as a room mate. Back then they kept 4 - 6 in a ward ( ooooooo what a bad idea). Any way i didnt have lung involvement back then and maybe that was a blessing, because i didnt pick anything up. I dont think they even knew about cepacia back then, and i never even heard the word psudomonas. There was never a mention of all these bactarial infections i could catch, and sadly i never knew the risks till i got cepacia 9 years ago. I am guessing when i switched Clinics when i was 27 they probably figured i HAD to know the risks by then, but i didnt. I am now very afraid to be around other cf patients because since i already have cepacia i am at risk of getting whatever they have , and i sure dont want to give them what i have. I did a car show this summer to benefit cf and there was a cf patient there that i met last year. We kept at least 4 feet apart to talk ( outdoors on the field ). He does not have cepacia and when i emailed him before the show i told him that i did, and that we have to keep distance. It really is a personal decision as everyone else has mentioned. Before i knew the risks i welcomed any cf patient as a friend, but now a days i dont even welcome people with the sniffles....lol
BUT i love my online cf friends <img src="i/expressions/heart.gif" border="0">
 
M

mic10467

New member
"Bugs

Well here's my story. I was late diagnosed at the age of 18, my younger brother also diagnosed a few years later. The issue of cross contamination has only come up in recent years. We lived together on and off through the years in our parents home. Recently we've lived together for the last two years. We aren't the most cleanest people in the world, since me, my brother, and my mom all live with lung disease, my mom having emphysema. Cross contamination never entered my mind and we've lived oblivious. My brother cultured many things that I did not. I mainly have stuck with two types of pseudomonas. He had two also along with various other non serious bacterias. We were both lucky enough not to get MRSA or cepacia. Last October, my brother had a successful double lung transplant and he's great. My health is still pretty good, 73% lung function I believe on a good day.

I was only confronted with the subject of cross contamination when my young 3 month old nephew discovered he has CF. Now we all are banned from seeing him, and even my mom, though she is bacteria free, is not allowed to touch him. She is not even allowed to go to my brother's house. It is only after 1 year that she's gotten to go to a park, sit on a blanket, and watch my nephew run all over. When he's come close to really looking at his grandma, he has been whisked away. It's a sad situation that has really torn our whole family apart. A few months ago, the babies father was told that he has also a novel mutation of CF, that me and my other two brothers don't have. So though this brother was always the healthiest in the family, it seems that he has some kind of mild case, diagnosed at 41. The doctor informed him that he should have minimal contact with his son now. Though this brother has never had any lung involvement of any kind. And though I've been in close quarters with this brother all of my life, and he hadn't developed lung involvement, he was strongly advised not to have alot of contact with me. I am the one left feeling like I have aids or something. My brother of course told me that it wasn't going to stop him from being around his son at all.

I am not into this whole cross contamination thing. I believe in common sense. I would probably honestly be wary of getting around a cfer with cepacia or mrsa, but don't know how I'd deal with that til then. I went to CF camp a few years when I was 18 and met some good friends that gave me a deep understanding in the world that I could get no other place. I didn't feel okay in the world til I met other cfers.

I've been lucky to find out late about my CF so that to me, I am the ultimate doctor. Not hearing all of the medical information from a young age, seems to have empowered me with a sense of control about my destiny, that I don't think I'd have if I'd known as a child. But of course, I would of loved to have known. I do the research on what's bugging me healthwise. This website and cystic-l have become invaluable and priceless in learning about potential health problems we cfers might encounter. I can't say that I've never listened to the doctors because they have never told me anything like this. I don't think I'd sit around for it, or I'd just ignore it. I am the one with final say. Granted I know that I am in the minority. I am okay with this, but since you asked I just wanted to tell my story. To me noone really knows for sure how we get those bacteria's so I will continue to live my life, be careful, and enjoy as much as I can.

I met a friend on Cystic-L in April or so. She lived in Florida and I lived in California. She's 45 and pretty funny. After emailing and calling back and forth, I flew to Florida last week and met her. Wow, it was great fun, very therapeutic, and a great experience. I will return to visit her and someday she will come see me. She informed her doctor about my visit. She had cultured MRSA a year ago, but had been clear since. She had two kinds of psuedomonas as did I. He told her not to eat from the same utensils, drink from the same cup, and the three feet rule. I got my own hotel, and car, but we still hung out together. I hugged her when I got there and when I left. My life had kind of hit a deep depression with the difficulties surrounding my nephews CF, and meeting her has I think pulled me into the next chapter of my life, which will be a happier time.

Michelle

39w/cf
 
M

mic10467

New member
"Bugs

Well here's my story. I was late diagnosed at the age of 18, my younger brother also diagnosed a few years later. The issue of cross contamination has only come up in recent years. We lived together on and off through the years in our parents home. Recently we've lived together for the last two years. We aren't the most cleanest people in the world, since me, my brother, and my mom all live with lung disease, my mom having emphysema. Cross contamination never entered my mind and we've lived oblivious. My brother cultured many things that I did not. I mainly have stuck with two types of pseudomonas. He had two also along with various other non serious bacterias. We were both lucky enough not to get MRSA or cepacia. Last October, my brother had a successful double lung transplant and he's great. My health is still pretty good, 73% lung function I believe on a good day.

I was only confronted with the subject of cross contamination when my young 3 month old nephew discovered he has CF. Now we all are banned from seeing him, and even my mom, though she is bacteria free, is not allowed to touch him. She is not even allowed to go to my brother's house. It is only after 1 year that she's gotten to go to a park, sit on a blanket, and watch my nephew run all over. When he's come close to really looking at his grandma, he has been whisked away. It's a sad situation that has really torn our whole family apart. A few months ago, the babies father was told that he has also a novel mutation of CF, that me and my other two brothers don't have. So though this brother was always the healthiest in the family, it seems that he has some kind of mild case, diagnosed at 41. The doctor informed him that he should have minimal contact with his son now. Though this brother has never had any lung involvement of any kind. And though I've been in close quarters with this brother all of my life, and he hadn't developed lung involvement, he was strongly advised not to have alot of contact with me. I am the one left feeling like I have aids or something. My brother of course told me that it wasn't going to stop him from being around his son at all.

I am not into this whole cross contamination thing. I believe in common sense. I would probably honestly be wary of getting around a cfer with cepacia or mrsa, but don't know how I'd deal with that til then. I went to CF camp a few years when I was 18 and met some good friends that gave me a deep understanding in the world that I could get no other place. I didn't feel okay in the world til I met other cfers.

I've been lucky to find out late about my CF so that to me, I am the ultimate doctor. Not hearing all of the medical information from a young age, seems to have empowered me with a sense of control about my destiny, that I don't think I'd have if I'd known as a child. But of course, I would of loved to have known. I do the research on what's bugging me healthwise. This website and cystic-l have become invaluable and priceless in learning about potential health problems we cfers might encounter. I can't say that I've never listened to the doctors because they have never told me anything like this. I don't think I'd sit around for it, or I'd just ignore it. I am the one with final say. Granted I know that I am in the minority. I am okay with this, but since you asked I just wanted to tell my story. To me noone really knows for sure how we get those bacteria's so I will continue to live my life, be careful, and enjoy as much as I can.

I met a friend on Cystic-L in April or so. She lived in Florida and I lived in California. She's 45 and pretty funny. After emailing and calling back and forth, I flew to Florida last week and met her. Wow, it was great fun, very therapeutic, and a great experience. I will return to visit her and someday she will come see me. She informed her doctor about my visit. She had cultured MRSA a year ago, but had been clear since. She had two kinds of psuedomonas as did I. He told her not to eat from the same utensils, drink from the same cup, and the three feet rule. I got my own hotel, and car, but we still hung out together. I hugged her when I got there and when I left. My life had kind of hit a deep depression with the difficulties surrounding my nephews CF, and meeting her has I think pulled me into the next chapter of my life, which will be a happier time.

Michelle

39w/cf
 
M

mic10467

New member
"Bugs

Well here's my story. I was late diagnosed at the age of 18, my younger brother also diagnosed a few years later. The issue of cross contamination has only come up in recent years. We lived together on and off through the years in our parents home. Recently we've lived together for the last two years. We aren't the most cleanest people in the world, since me, my brother, and my mom all live with lung disease, my mom having emphysema. Cross contamination never entered my mind and we've lived oblivious. My brother cultured many things that I did not. I mainly have stuck with two types of pseudomonas. He had two also along with various other non serious bacterias. We were both lucky enough not to get MRSA or cepacia. Last October, my brother had a successful double lung transplant and he's great. My health is still pretty good, 73% lung function I believe on a good day.

I was only confronted with the subject of cross contamination when my young 3 month old nephew discovered he has CF. Now we all are banned from seeing him, and even my mom, though she is bacteria free, is not allowed to touch him. She is not even allowed to go to my brother's house. It is only after 1 year that she's gotten to go to a park, sit on a blanket, and watch my nephew run all over. When he's come close to really looking at his grandma, he has been whisked away. It's a sad situation that has really torn our whole family apart. A few months ago, the babies father was told that he has also a novel mutation of CF, that me and my other two brothers don't have. So though this brother was always the healthiest in the family, it seems that he has some kind of mild case, diagnosed at 41. The doctor informed him that he should have minimal contact with his son now. Though this brother has never had any lung involvement of any kind. And though I've been in close quarters with this brother all of my life, and he hadn't developed lung involvement, he was strongly advised not to have alot of contact with me. I am the one left feeling like I have aids or something. My brother of course told me that it wasn't going to stop him from being around his son at all.

I am not into this whole cross contamination thing. I believe in common sense. I would probably honestly be wary of getting around a cfer with cepacia or mrsa, but don't know how I'd deal with that til then. I went to CF camp a few years when I was 18 and met some good friends that gave me a deep understanding in the world that I could get no other place. I didn't feel okay in the world til I met other cfers.

I've been lucky to find out late about my CF so that to me, I am the ultimate doctor. Not hearing all of the medical information from a young age, seems to have empowered me with a sense of control about my destiny, that I don't think I'd have if I'd known as a child. But of course, I would of loved to have known. I do the research on what's bugging me healthwise. This website and cystic-l have become invaluable and priceless in learning about potential health problems we cfers might encounter. I can't say that I've never listened to the doctors because they have never told me anything like this. I don't think I'd sit around for it, or I'd just ignore it. I am the one with final say. Granted I know that I am in the minority. I am okay with this, but since you asked I just wanted to tell my story. To me noone really knows for sure how we get those bacteria's so I will continue to live my life, be careful, and enjoy as much as I can.

I met a friend on Cystic-L in April or so. She lived in Florida and I lived in California. She's 45 and pretty funny. After emailing and calling back and forth, I flew to Florida last week and met her. Wow, it was great fun, very therapeutic, and a great experience. I will return to visit her and someday she will come see me. She informed her doctor about my visit. She had cultured MRSA a year ago, but had been clear since. She had two kinds of psuedomonas as did I. He told her not to eat from the same utensils, drink from the same cup, and the three feet rule. I got my own hotel, and car, but we still hung out together. I hugged her when I got there and when I left. My life had kind of hit a deep depression with the difficulties surrounding my nephews CF, and meeting her has I think pulled me into the next chapter of my life, which will be a happier time.

Michelle

39w/cf
 
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