Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FLJoan wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendleySent: Wednesday, November 21, 2007 10:39 AMTo: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen,Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954Date: Wed, 21 Nov 2007 06:56:00 -0800Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Eileen, my system could not handle the MAI meds for more than 6 weeks of the 18 month regimen, so I cannot take them. Am researching “now what”. I have a feeling I just ignore it. I am 65, living in Florida USA, and have only been diagnosed for 6 months with bronc and 2 or 3 months for MAI. We’ll see. Still feeling excellent. Lay down and cough up ever afternoon. Lucky so far. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer Sent: Friday, November 23, 2007 9:26 AM To: bronchiectasis Subject: RE: Collapsed Lung Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FL Joan <queenmum32909cfl (DOT) rr.com> wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendley Sent: Wednesday, November 21, 2007 10:39 AM To: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen, Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954 Date: Wed, 21 Nov 2007 06:56:00 -0800 Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Eileen, my system could not handle the MAI meds for more than 6 weeks of the 18 month regimen, so I cannot take them. Am researching “now what”. I have a feeling I just ignore it. I am 65, living in Florida USA, and have only been diagnosed for 6 months with bronc and 2 or 3 months for MAI. We’ll see. Still feeling excellent. Lay down and cough up ever afternoon. Lucky so far. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer Sent: Friday, November 23, 2007 9:26 AM To: bronchiectasis Subject: RE: Collapsed Lung Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FL Joan <queenmum32909cfl (DOT) rr.com> wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendley Sent: Wednesday, November 21, 2007 10:39 AM To: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen, Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954 Date: Wed, 21 Nov 2007 06:56:00 -0800 Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Eileen, my system could not handle the MAI meds for more than 6 weeks of the 18 month regimen, so I cannot take them. Am researching “now what”. I have a feeling I just ignore it. I am 65, living in Florida USA, and have only been diagnosed for 6 months with bronc and 2 or 3 months for MAI. We’ll see. Still feeling excellent. Lay down and cough up ever afternoon. Lucky so far. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer Sent: Friday, November 23, 2007 9:26 AM To: bronchiectasis Subject: RE: Collapsed Lung Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FL Joan <queenmum32909cfl (DOT) rr.com> wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendley Sent: Wednesday, November 21, 2007 10:39 AM To: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen, Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954 Date: Wed, 21 Nov 2007 06:56:00 -0800 Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Thanks, Bunny for the info. What antibiotics (if any) have helped everyone here? Are there any other drugs that help? I'm also using a warm air vaporizor most nights with campor and I'm sleeping right thru the night without waking up coughing. Hope this helps someone! Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Thanks, Bunny for the info. What antibiotics (if any) have helped everyone here? Are there any other drugs that help? I'm also using a warm air vaporizor most nights with campor and I'm sleeping right thru the night without waking up coughing. Hope this helps someone! Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Joan, did your doctor start you on all 3 meds at one time? I know when I first started treatment for MAI (or MAC) I had a bad reaction and went off them within a few weeks. My doctor started over about a month later on 1 of the meds, then a month later another one and the third one after 3 months. It took me a while to get up to full strength of the meds and I will probably be on them longer than some people, but they are working and I'm only having a few side affects which are tolerable. I was diagnosed with MAI about 5 years ago, but only started treatment about 1 1/2 years ago. When first diagnosed, I felt fine also and the physician I was seeing at that time did not think it was necessary to treat, but about 2 1/2 years ago I started feeling very run down with night sweats and a couple of bouts of pneumonia so the doctor I have now said it was time to start the meds. I am feeling much, much better with a lot more energy. I was diagnosed with bronch in 1992. There is no telling how long the MAI has been around, since like many of you have said, there are a lot of times we are not taken seriously so no tests were done. I also lie down in late afternoon or early evening to do posteral drainage. When first diagnosed, it was only a few times a week, but now I do it every day. For some people the MAI does not become invasive and I hope that is your case. Take care. Jan in St. Louis, MOJoan wrote: Eileen, my system could not handle the MAI meds for more than 6 weeks of the 18 month regimen, so I cannot take them. Am researching “now what”. I have a feeling I just ignore it. I am 65, living in Florida USA, and have only been diagnosed for 6 months with bronc and 2 or 3 months for MAI. We’ll see. Still feeling excellent. Lay down and cough up ever afternoon. Lucky so far. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen BauerSent: Friday, November 23, 2007 9:26 AMTo: bronchiectasis Subject: RE: Collapsed Lung Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FLJoan <queenmum32909cfl (DOT) rr.com> wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendleySent: Wednesday, November 21, 2007 10:39 AMTo: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen,Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954Date: Wed, 21 Nov 2007 06:56:00 -0800Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Yes, my doc started me on all 3 at once and within a short time I developed an ulcer that we have now repaired. Will suggest what you said helped you. I know he is willing to try again. Thanks. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Glass Sent: Friday, November 23, 2007 9:59 PM To: bronchiectasis Subject: RE: Collapsed Lung Joan, did your doctor start you on all 3 meds at one time? I know when I first started treatment for MAI (or MAC) I had a bad reaction and went off them within a few weeks. My doctor started over about a month later on 1 of the meds, then a month later another one and the third one after 3 months. It took me a while to get up to full strength of the meds and I will probably be on them longer than some people, but they are working and I'm only having a few side affects which are tolerable. I was diagnosed with MAI about 5 years ago, but only started treatment about 1 1/2 years ago. When first diagnosed, I felt fine also and the physician I was seeing at that time did not think it was necessary to treat, but about 2 1/2 years ago I started feeling very run down with night sweats and a couple of bouts of pneumonia so the doctor I have now said it was time to start the meds. I am feeling much, much better with a lot more energy. I was diagnosed with bronch in 1992. There is no telling how long the MAI has been around, since like many of you have said, there are a lot of times we are not taken seriously so no tests were done. I also lie down in late afternoon or early evening to do posteral drainage. When first diagnosed, it was only a few times a week, but now I do it every day. For some people the MAI does not become invasive and I hope that is your case. Take care. Jan in St. Louis, MO Joan <queenmum32909cfl (DOT) rr.com> wrote: Eileen, my system could not handle the MAI meds for more than 6 weeks of the 18 month regimen, so I cannot take them. Am researching “now what”. I have a feeling I just ignore it. I am 65, living in Florida USA, and have only been diagnosed for 6 months with bronc and 2 or 3 months for MAI. We’ll see. Still feeling excellent. Lay down and cough up ever afternoon. Lucky so far. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer Sent: Friday, November 23, 2007 9:26 AM To: bronchiectasis Subject: RE: Collapsed Lung Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FL Joan <queenmum32909cfl (DOT) rr.com> wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendley Sent: Wednesday, November 21, 2007 10:39 AM To: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen, Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954 Date: Wed, 21 Nov 2007 06:56:00 -0800 Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Yes, my doc started me on all 3 at once and within a short time I developed an ulcer that we have now repaired. Will suggest what you said helped you. I know he is willing to try again. Thanks. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Glass Sent: Friday, November 23, 2007 9:59 PM To: bronchiectasis Subject: RE: Collapsed Lung Joan, did your doctor start you on all 3 meds at one time? I know when I first started treatment for MAI (or MAC) I had a bad reaction and went off them within a few weeks. My doctor started over about a month later on 1 of the meds, then a month later another one and the third one after 3 months. It took me a while to get up to full strength of the meds and I will probably be on them longer than some people, but they are working and I'm only having a few side affects which are tolerable. I was diagnosed with MAI about 5 years ago, but only started treatment about 1 1/2 years ago. When first diagnosed, I felt fine also and the physician I was seeing at that time did not think it was necessary to treat, but about 2 1/2 years ago I started feeling very run down with night sweats and a couple of bouts of pneumonia so the doctor I have now said it was time to start the meds. I am feeling much, much better with a lot more energy. I was diagnosed with bronch in 1992. There is no telling how long the MAI has been around, since like many of you have said, there are a lot of times we are not taken seriously so no tests were done. I also lie down in late afternoon or early evening to do posteral drainage. When first diagnosed, it was only a few times a week, but now I do it every day. For some people the MAI does not become invasive and I hope that is your case. Take care. Jan in St. Louis, MO Joan <queenmum32909cfl (DOT) rr.com> wrote: Eileen, my system could not handle the MAI meds for more than 6 weeks of the 18 month regimen, so I cannot take them. Am researching “now what”. I have a feeling I just ignore it. I am 65, living in Florida USA, and have only been diagnosed for 6 months with bronc and 2 or 3 months for MAI. We’ll see. Still feeling excellent. Lay down and cough up ever afternoon. Lucky so far. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer Sent: Friday, November 23, 2007 9:26 AM To: bronchiectasis Subject: RE: Collapsed Lung Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FL Joan <queenmum32909cfl (DOT) rr.com> wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendley Sent: Wednesday, November 21, 2007 10:39 AM To: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen, Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954 Date: Wed, 21 Nov 2007 06:56:00 -0800 Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Yes, my doc started me on all 3 at once and within a short time I developed an ulcer that we have now repaired. Will suggest what you said helped you. I know he is willing to try again. Thanks. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Glass Sent: Friday, November 23, 2007 9:59 PM To: bronchiectasis Subject: RE: Collapsed Lung Joan, did your doctor start you on all 3 meds at one time? I know when I first started treatment for MAI (or MAC) I had a bad reaction and went off them within a few weeks. My doctor started over about a month later on 1 of the meds, then a month later another one and the third one after 3 months. It took me a while to get up to full strength of the meds and I will probably be on them longer than some people, but they are working and I'm only having a few side affects which are tolerable. I was diagnosed with MAI about 5 years ago, but only started treatment about 1 1/2 years ago. When first diagnosed, I felt fine also and the physician I was seeing at that time did not think it was necessary to treat, but about 2 1/2 years ago I started feeling very run down with night sweats and a couple of bouts of pneumonia so the doctor I have now said it was time to start the meds. I am feeling much, much better with a lot more energy. I was diagnosed with bronch in 1992. There is no telling how long the MAI has been around, since like many of you have said, there are a lot of times we are not taken seriously so no tests were done. I also lie down in late afternoon or early evening to do posteral drainage. When first diagnosed, it was only a few times a week, but now I do it every day. For some people the MAI does not become invasive and I hope that is your case. Take care. Jan in St. Louis, MO Joan <queenmum32909cfl (DOT) rr.com> wrote: Eileen, my system could not handle the MAI meds for more than 6 weeks of the 18 month regimen, so I cannot take them. Am researching “now what”. I have a feeling I just ignore it. I am 65, living in Florida USA, and have only been diagnosed for 6 months with bronc and 2 or 3 months for MAI. We’ll see. Still feeling excellent. Lay down and cough up ever afternoon. Lucky so far. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer Sent: Friday, November 23, 2007 9:26 AM To: bronchiectasis Subject: RE: Collapsed Lung Dear , It takes time to cure MAI, however it is curable unlike bronch. With my MAI, I was on meds for 18 months and did quite well. I think the 18 months of 2000mg. of antibiotics compromised my immune system. I wish you well, you will be fine. Eileen-FL Joan <queenmum32909cfl (DOT) rr.com> wrote: I too have MAC with my bronc and only recently diagnosed. Diagnosis was from a sputum sample which sat for 6 weeks developing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of JMP pendley Sent: Wednesday, November 21, 2007 10:39 AM To: bronchiectasis Subject: RE: Collapsed Lung Hi Eileen, Thank you for sharing this. It is amazing what can happen so quickly. I was recently diagnosed with MAC and PCD disease. They are as a result of Bronchiectasis (which I have had for 25 years). Crazy!.... - Janine To: bronchiectasis From: ecbauer954 Date: Wed, 21 Nov 2007 06:56:00 -0800 Subject: Collapsed Lung Hi All, I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. Have a happy healthy Thanksgiving everyone, Eileen-FL Never miss a thing. Make Yahoo your homepage. Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Hi Eileen, I hope you are feeling better. Sounds pretty scary. How long did you have the tube in there? I have bronchiectasis/ABPA and one time had a bleb, which could have led to a collapsed lung. Last time I got sick, my CTScan said pneumonia (July), but my doctors thought aspergillus because of having it before. I was put on Levaquin and Vfend and later prednisone. My doctor so far, will not let me quit the prednisone. I am on 5 mgs. of that and 200 mgs. of Vfend. I want to quit the prednisone. I am having a CT Scan next week and have a blood test to check my IGE levels. I will see the Dr. on 12/4. He seems to think I need to control my condition or I will get more lung damage. I am finding the doctors unsure on how to treat this..... Again, hope you are feeling better. Barbara >Hi All, > > I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. > > I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. > > My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. > > Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. > > This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. > > Have a happy healthy Thanksgiving everyone, > Eileen-FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Hi Eileen, I hope you are feeling better. Sounds pretty scary. How long did you have the tube in there? I have bronchiectasis/ABPA and one time had a bleb, which could have led to a collapsed lung. Last time I got sick, my CTScan said pneumonia (July), but my doctors thought aspergillus because of having it before. I was put on Levaquin and Vfend and later prednisone. My doctor so far, will not let me quit the prednisone. I am on 5 mgs. of that and 200 mgs. of Vfend. I want to quit the prednisone. I am having a CT Scan next week and have a blood test to check my IGE levels. I will see the Dr. on 12/4. He seems to think I need to control my condition or I will get more lung damage. I am finding the doctors unsure on how to treat this..... Again, hope you are feeling better. Barbara >Hi All, > > I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. > > I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. > > My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. > > Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. > > This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. > > Have a happy healthy Thanksgiving everyone, > Eileen-FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Hi Eileen, I hope you are feeling better. Sounds pretty scary. How long did you have the tube in there? I have bronchiectasis/ABPA and one time had a bleb, which could have led to a collapsed lung. Last time I got sick, my CTScan said pneumonia (July), but my doctors thought aspergillus because of having it before. I was put on Levaquin and Vfend and later prednisone. My doctor so far, will not let me quit the prednisone. I am on 5 mgs. of that and 200 mgs. of Vfend. I want to quit the prednisone. I am having a CT Scan next week and have a blood test to check my IGE levels. I will see the Dr. on 12/4. He seems to think I need to control my condition or I will get more lung damage. I am finding the doctors unsure on how to treat this..... Again, hope you are feeling better. Barbara >Hi All, > > I had a non-productive cough for about a week, it got worse and I was given prednisone and Levaquin. A few days later on a Friday, Dr. ordered a chest x-ray which showed walking pneumonia. Since I was on medication, he said that if I got worse over the weekend I was to go to emergency. My cough did get worse and the phlegm in the center of my chest would not come up. I was having difficulty breathing (which never happened before) and decided it was time to go to the emergency room. I was x-rayed and diagnosed with a collapsed left lung in addition to the pneumonia which was quite a shock. > > I needed a chest tube inserted and I was so frightened of the procedure, however it wasn't as painful as I thought, but coughing with this tube in your body is no picnic. Lots of morphine helped me through this ordeal. > > My sputum was cultured and they found that I have another aspergillus infection. My infectious disease Dr. gave me a script for V-Fend which has worked very well for me in the past. I had to wait 3 days for my insurance company to pre-authorize this medication which costs $2,326.00 for one month's supply (without insurance), before I was able to get it into my system. > > Apparently the surgeon feels that the incessant coughing produced a small hole in the lung, coupled with the pneumonia and fluid, it collapsed. He stated that if I get one of those horrible coughing spells, I need to take my codeine cough medicine to avoid any future problems. I didn't realize that heavy coughing spells could cause this to happen. > > This is a totally new experience for me and wonder if anyone in the group has had a similar experience to share? I also understand that after a collapsed lung, one can not fly for 6 weeks. > > Have a happy healthy Thanksgiving everyone, > Eileen-FL > Quote Link to comment Share on other sites More sharing options...
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