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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was completely out of the blue. There was a lot of blood so I went to ER and stayed there overnight. I continue to cough up blood for hours. They thought I had TB. But the sputum tests came back negative for TB but positive for MAC. It was very scary the first time with the amount of blood that came out of me and with me not knowing what the cause was. After the initial episode, I went over 2 years without see any blood. I've always had excessive mucus that cause me to cough and clear my throat a lot even before being diagnosed with Brochiectasis and MAC. The second time I saw blood in the mucus that I coughed up was late February of this year when I had laryngitis and later on bronchitis. But the amount of blood was minimal, more like clots floating in the sputum. But it did last 2-3 days of on and off of seeing the clots. This time I did not go to the ER because I already know the reason and because the amount was trivial. I did though make an appointment to see my pulmonary doctor. He prescribed 10-day worth of antibiotics. I have been fine since then although there is still a lot of mucus that I would cough up, especially when I first get up in the morning or after I exercise. My pulmonary doctor does not believe in prescribing big 3 the minute his patients are diagnosed with MAC because the negative effect of these drug could outweigh the benefit to the patients. After giving me the pros and cons of taking these drugs, he let me make my own decisions. I chose not to take it and I have not changed my mind because, other than coughing up a lot of mucus, I'm able to stay active and live a normal life. @unicorn, do you have other lung-related health issues? I mean other than Bronchiectasis and/or MAC or MAI (I can't recall what you have)? Is your condition bad enough that your doctor thinks that you will need those drugs to function?
Replies to "@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was..."
@unicorn Yes, coughing up blood is part of Brochiectasis and MAC. I believe both can cause coughing up blood. If you do not have other lung-related illnesses and your immune system is not compromised, just keep doing what you are doing, exercise and eat healthy. Don't use up too much of your emotions and energy worrying about dying because you will most likely not die of Bronchiectasis unless you have other underlying issues that may worsen because you have Bronchiectasis. Since the big 3 have given you so much grief, stopping them may be a very good decision. Now you can concentrate on maintaining your physical and mental strength and not be distracted and derailed by all the side effects, especially some of the serious long term negative effect on your body. I would worry THAT a whole lot more than worrying about dying of Bronchiectasis or choking to death by the blood that you cough up. I'm not a doctor. But my pulmonary doctor agrees with me that I do not need to be put on the big 3 unless I develop other health problems later on that would affect the functions of my lungs. He said we would deal with "later on" when it happens not before.
@unicorn I love your attitude Christa! To be on the safe side, try Googling 'Interventional Radiologist'. That is a procedure to get if you have a LOT of bleeding in your lungs. Another member had posted something about that not too long ago. She said you should call your local hospital to see if their ER is equipped to do that procedure in case you ever need it. When the dust settles here from returning texts; I will look it up also - we can compare notes.
Although I coughed up huge amount of blood the first time in September 2014, I was not on any meds and there was no more episode of hemoptysis for the next 2.5 years. When I started seeing small amount of blood in my sputum again earlier this year, I was having infections in my lungs brought on by laryngitis and bronchitis. The 10-day antibiotics (don't remember the name of it) was prescribed to counter these infections which worked to stop the hemoptysis. @windwalker Terri is right. Infections can cause such bleeding. While trying to live an active and healthy life, we also need to try hard to avoid getting these infections. It's easier said than done as we all want to live a normal life and have normal social interactions with people around us. But being mindful never hurts.
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No other problems, I rarely get sick. I try to live a very clean lifestyle, exercise, organic foods, No alcohol, rarely desserts, I do try to avoid crowds, especially xmas parties, (everybody sick!) I know I've said all this before, I'm trim, not skeletal, anymore, love to shop! Keeping a positive attitude BUT....I think about the blood and have decided it is not the way to go, cannot choke to death, scary. So if it starts to happen more frequently, I may just put on a red party dress, and fabulous shoes, and attend a big xmas party!!!