<span class="Apple-style-span" style="background-color: rgb(250, 250, 250); "><font class="Apple-style-span" size="3" style="border-style: initial; border-color: initial; font-size: 12px; background-color: rgb(255, 255, 255); ">My mom informed me tonight, and I am sure I am going to hear from him soon. <br><br>Im aware of the severity of this news, and I have dealt with my little brothers mortality (as painful as that may be). <br>Are things still as grave now as they have been in the last ten years? Most research I can find is 2001 ish. <br><br>Also, what type of isolation will he be subjected to? He is 16..so? School? Sex? </font><div><font class="Apple-style-span" size="3" style="border-style: initial; border-color: initial; font-size: 12px; background-color: rgb(255, 255, 255); "><br>I know he's got a tough road ahead, I am just trying to prepare myself in a realistic way, considering the situation....Am I being too morbid?</font></div>
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B.Cepacia help
- Thread starter revofev
- Start date
<span class="Apple-style-span" style="background-color: rgb(250, 250, 250); "><font class="Apple-style-span" size="3" style="border-style: initial; border-color: initial; font-size: 12px; background-color: rgb(255, 255, 255); ">My mom informed me tonight, and I am sure I am going to hear from him soon.<br><br>Im aware of the severity of this news, and I have dealt with my little brothers mortality (as painful as that may be).<br>Are things still as grave now as they have been in the last ten years? Most research I can find is 2001 ish.<br><br>Also, what type of isolation will he be subjected to? He is 16..so? School? Sex?</font><font class="Apple-style-span" size="3" style="border-style: initial; border-color: initial; font-size: 12px; background-color: rgb(255, 255, 255); "><br>I know he's got a tough road ahead, I am just trying to prepare myself in a realistic way, considering the situation....Am I being too morbid?</font>
<span class="Apple-style-span" style="background-color: rgb(250, 250, 250); "><font class="Apple-style-span" size="3" style="border-style: initial; border-color: initial; font-size: 12px; background-color: rgb(255, 255, 255); ">My mom informed me tonight, and I am sure I am going to hear from him soon.<br><br>Im aware of the severity of this news, and I have dealt with my little brothers mortality (as painful as that may be).<br>Are things still as grave now as they have been in the last ten years? Most research I can find is 2001 ish.<br><br>Also, what type of isolation will he be subjected to? He is 16..so? School? Sex?</font><font class="Apple-style-span" size="3" style="border-style: initial; border-color: initial; font-size: 12px; background-color: rgb(255, 255, 255); "><br>I know he's got a tough road ahead, I am just trying to prepare myself in a realistic way, considering the situation....Am I being too morbid?</font>
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs. Best of Luck to you.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs. Best of Luck to you.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs. Best of Luck to you.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs. Best of Luck to you.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs. Best of Luck to you.
It is important to remember that every person/situation is different. My son had B. Cepacia last summer. Luckily we caught it early. We medicated as prescribed and we have since cultured negative for it. Unfortunately it is not a common bacteria so not a lot is known about it. And yes, it all sounds horrible. There is a guy in Michigan, I believe, who is the best person to speak with or contact. Call CFF.org and ask them who he is. That's what I did and if I still had that info I would give it to you. However, don't lose hope. Never lose hope with this disease as they are researching and finding help daily, whether it's treatments or drugs. Best of Luck to you.
P
pencf
Guest
Been where you are! Got that news that our daughter at age 4 (2000) cultured B. Cepacia. I was devastated, and panicked that her days were numbered, but then again, with CF I guess they are anyway. At that time, the registry for patients culturing B. Cepacia showed the longest living patient was 9 yrs. Well, its 2011, our daughter has had that bug for 11 yrs., and for the most part, we live in harmony with it, as we do PA. She has been hospitalized 6 times in 11 yrs., to CF standards, that's pretty good. <br>If your doctor has not already done so, request that the cepacia sputum culture be sent to Dr. LePuma. He is the researcher at the core of B. Cepacia Research. There are 6 to 8 genomes of B. Cepacia and not all are considered directly fatal. B. Cepacia IS common in our environment. It lives in ponds, creeks, basements, dirt...etc. I truly believe my daughter got this bug from one of two places. From the coat of our Black Lab who had taken a dip in local pond in a park near our home, OR a pile of top soil I let her play for hours in. If I had known, she wouldn't have been in either situation, however, she was 4 yrs old, and was just being a kid, "play in the dirt" and Loving on our Family Pet.<br>Take one day at a time, and ask for sputum cultures at EVERY quarterly visit! Be proactive! The Best Medicine when dealing with CF! <br>
P
pencf
Guest
Been where you are! Got that news that our daughter at age 4 (2000) cultured B. Cepacia. I was devastated, and panicked that her days were numbered, but then again, with CF I guess they are anyway. At that time, the registry for patients culturing B. Cepacia showed the longest living patient was 9 yrs. Well, its 2011, our daughter has had that bug for 11 yrs., and for the most part, we live in harmony with it, as we do PA. She has been hospitalized 6 times in 11 yrs., to CF standards, that's pretty good. <br>If your doctor has not already done so, request that the cepacia sputum culture be sent to Dr. LePuma. He is the researcher at the core of B. Cepacia Research. There are 6 to 8 genomes of B. Cepacia and not all are considered directly fatal. B. Cepacia IS common in our environment. It lives in ponds, creeks, basements, dirt...etc. I truly believe my daughter got this bug from one of two places. From the coat of our Black Lab who had taken a dip in local pond in a park near our home, OR a pile of top soil I let her play for hours in. If I had known, she wouldn't have been in either situation, however, she was 4 yrs old, and was just being a kid, "play in the dirt" and Loving on our Family Pet.<br>Take one day at a time, and ask for sputum cultures at EVERY quarterly visit! Be proactive! The Best Medicine when dealing with CF! <br>