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Lung & Respiratory Disorders / COPD Message Board


Lung & Respiratory Disorders / COPD Board Index


Hi, Im a 31 year old female who was just diagnosed with Mycobacterium Avium Complex, my ID dr thinks its because he thinks I have what is called Lady Windermere Syndrome(?). I was diagnosed with MAC in May 2013.
I have always had lung problems when I was 17 I had my first pneumothorax(collapsed lung) and they put in a chest tube, 11 days later I was released from the hospital only to have it collapse again a month later. This time they discovered I was getting blebs or polyps that spontaneously pop and create a hole in my lung and it will collapse. Instead of me having to be in the hospital month after month with this Spontaneous Pneumothorax they did surgery. They stapled the holes and did what is called Pleurodesis (attach the lung to the chest wall) so it would not collapse again. I was released from the hospital 10 days later all was good for 2 months when my other lung decided to collapse. Knowing the history of my right lung they went ahead and did the lung surgery Pleurodesis on my left lung. I have not had a collapsed lung since, but I do still get holes in them, I can tell when one of the blebs have popped. I feel a sharp pain and then I get the bubbling sensation at the site. Its weird but tolerable, I could tell I had a hole in my left lung again one evening about 4 years ago when that sensation started. It usually goes away within a few hours to a Day. This time though the hole seemed not to be healing so I went to the Pulmonologist. He discovered there was a hole and it had an infection in it and that was what was causing the hole not to heal. We tried antibiotics and I even went to an ID dr back then and nothing was clearing the infection so we had to do a Bronchoscopy, that did the trick, but didn't get all the infection out so every time the seasons would change I would get sick and the coughing and hurting would come back. About a year or year and a half after knowing about the non healing hole he said we needed to do surgery and cut that part of my lung out. We were all on board until I lost my job and lost health insurance.
Now almost 4 years later the hole is bigger 9cm and the infection that was there has turned into MAC and has spread into my other lung. I really wish I knew how important it was to have that surgery, I would have done it without insurance back then, but to me I would get sick then get better and I thought I was ok.
This last time I got sick back in Oct. of 2012 I have not got better, Im getting worse. My lunt infection was turned into fungus MAC and like I said I was diagnosed in May 2013.
I still need lung surgery to cut out the lower lobe of my left lung where the 9cm hole is and the hording grounds for infection/fungus but I have to wait until the MAC is cured/gone from my lungs.
The surgery was going to be risky anyway because of the pleurodisis and now they wont touch me because of the MAC.
I just started my rounds of the 3 antibiotics the 2nd week of July 2013 they are Clarithromycin 2x a day, Ethambutol 3x a day, and Rifampin 2x a day. On top of that I try to do my breathing treatments with Albuterol 2x a day and I have my inhalers of Ventolin 2x a day. I also take Ibuprofen 800 as needed for pain and Tylenol as needed for fevers Ive been getting at night.
Ive been on the antibiotics for a week as of today July 16 2013, so far so good. For women who know I feel like Im in my 1st trimester of pregnancy, sleepy all the time, icky tummy, and my brain feels fried(lol). Since Oct of 2012 my breathing has become labored, I cough all the time(sputum in the mornings), and Im always tired. Ive had weight loss probably about 35#, for me that is a lot because Im 6'0" and should weigh around 160, right now Im weighing around 125-126. Im praying I don't loose any more weight and I can tolerate all this medicine!!!
Im suppose to go back to the Pulmonologist in Nov 2013 to see how the medicine is working. Im thinking of going to another specialist at a bigger hospital in one of the bigger cities that are near me just to get a 2nd opinion and see what they think of having MAC with a 9cm hole and pleurodesis. I need to know my options and if I need to be doing anything else or not doing things.... My dr's here are pretty good but its like "here take this medication and hope it clears up to do surgery, see you in 6 months"....I don't like that. This situation is scary enough its better to have other opinions I think :) .
Anyway, Ive been reading a lot of posts on here about MAC and wanted to post my story. I hope to spread light on this situation for someone as I go through this for the next year or 2. I hope to hear from you guys and your situations maybe it will help me too and it helps to talk about it no matter what.
Take care and God Bless!!
Tiff
[QUOTE=TiffColtBrax;5200119]Hi, Im a 31 year old female who was just diagnosed with Mycobacterium Avium Complex, my ID dr thinks its because he thinks I have what is called Lady Windermere Syndrome(?). I was diagnosed with MAC in May 2013.
I have always had lung problems when I was 17 I had my first pneumothorax(collapsed lung) and they put in a chest tube, 11 days later I was released from the hospital only to have it collapse again a month later. This time they discovered I was getting blebs or polyps that spontaneously pop and create a hole in my lung and it will collapse. Instead of me having to be in the hospital month after month with this Spontaneous Pneumothorax they did surgery. They stapled the holes and did what is called Pleurodesis (attach the lung to the chest wall) so it would not collapse again. I was released from the hospital 10 days later all was good for 2 months when my other lung decided to collapse. Knowing the history of my right lung they went ahead and did the lung surgery Pleurodesis on my left lung. I have not had a collapsed lung since, but I do still get holes in them, I can tell when one of the blebs have popped. I feel a sharp pain and then I get the bubbling sensation at the site. Its weird but tolerable, I could tell I had a hole in my left lung again one evening about 4 years ago when that sensation started. It usually goes away within a few hours to a Day. This time though the hole seemed not to be healing so I went to the Pulmonologist. He discovered there was a hole and it had an infection in it and that was what was causing the hole not to heal. We tried antibiotics and I even went to an ID dr back then and nothing was clearing the infection so we had to do a Bronchoscopy, that did the trick, but didn't get all the infection out so every time the seasons would change I would get sick and the coughing and hurting would come back. About a year or year and a half after knowing about the non healing hole he said we needed to do surgery and cut that part of my lung out. We were all on board until I lost my job and lost health insurance.
Now almost 4 years later the hole is bigger 9cm and the infection that was there has turned into MAC and has spread into my other lung. I really wish I knew how important it was to have that surgery, I would have done it without insurance back then, but to me I would get sick then get better and I thought I was ok.
This last time I got sick back in Oct. of 2012 I have not got better, Im getting worse. My lunt infection was turned into fungus MAC and like I said I was diagnosed in May 2013.
I still need lung surgery to cut out the lower lobe of my left lung where the 9cm hole is and the hording grounds for infection/fungus but I have to wait until the MAC is cured/gone from my lungs.
The surgery was going to be risky anyway because of the pleurodisis and now they wont touch me because of the MAC.
I just started my rounds of the 3 antibiotics the 2nd week of July 2013 they are Clarithromycin 2x a day, Ethambutol 3x a day, and Rifampin 2x a day. On top of that I try to do my breathing treatments with Albuterol 2x a day and I have my inhalers of Ventolin 2x a day. I also take Ibuprofen 800 as needed for pain and Tylenol as needed for fevers Ive been getting at night.
Ive been on the antibiotics for a week as of today July 16 2013, so far so good. For women who know I feel like Im in my 1st trimester of pregnancy, sleepy all the time, icky tummy, and my brain feels fried(lol). Since Oct of 2012 my breathing has become labored, I cough all the time(sputum in the mornings), and Im always tired. Ive had weight loss probably about 35#, for me that is a lot because Im 6'0" and should weigh around 160, right now Im weighing around 125-126. Im praying I don't loose any more weight and I can tolerate all this medicine!!!
Im suppose to go back to the Pulmonologist in Nov 2013 to see how the medicine is working. Im thinking of going to another specialist at a bigger hospital in one of the bigger cities that are near me just to get a 2nd opinion and see what they think of having MAC with a 9cm hole and pleurodesis. I need to know my options and if I need to be doing anything else or not doing things.... My dr's here are pretty good but its like "here take this medication and hope it clears up to do surgery, see you in 6 months"....I don't like that. This situation is scary enough its better to have other opinions I think :) .
Anyway, Ive been reading a lot of posts on here about MAC and wanted to post my story. I hope to spread light on this situation for someone as I go through this for the next year or 2. I hope to hear from you guys and your situations maybe it will help me too and it helps to talk about it no matter what.
Take care and God Bless!!
Tiff[/QUOTE]

I know the battle that you are going through. I was taking 3 kinds of antibiotics, totaling 2400mg. a day. I took probiotics for my stomach/ intestinal problems twice a day. I took them for a year and a half. I lost 28 lbs., and, at times, felt like just throwing in the towel and giving up. However, God saw me through it, and, in the end, I came out a stronger person from it all. You went through so much before you ever got the MAC. I can understand how you must be feeling. My pulmonologist sent me to a teaching hospital, so that he could get some expert advice from an MD that had more experience in treating the disease. His first comment to me was that I didn't look like a "MAC patient". Needless to say, I left there with no more knowledge than I had when I arrived. I told my pulmonologist what he said, and that I felt I didn't need to go see him again. It wasn't an experience that I ever want to have again. I will add you to my prayer list. God Bless you and keep the faith. It may not feel like it at the moment, but it will get better, little by little. Peggy





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