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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
Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.
Replies to "Hi Katherine, I was doing a google search and this forum came up as one of..."
Thank for the advice, Irene. The specialist did perform the bronchoscopy 2 1/2 years ago when it first happened. He didn't find anything. Since then I have had chest X-rays once a year. No, have not had CT scan yet. I'm waiting to see what he will suggest.
ling123 do you have a name .. so much more personal. SO glad you found us! Yes, when I was first diagnosed it was so scary .. I felt so alone .. like I was the only person in the world. But here you have found a home! We have ALL walked the walk you are walking .. we will support you every step of the way now that you have found us! But I must tell you that Mayo Clinic formed this wonderful Mayo Connect Forum and just contacted me to be a Volunteer Mentor.
WOW! That amount of blood must have been so scary! Most of us are diagnosed from a sputum culture .. Xray or something much less dramatic. Question: since you were diagnosed in 2014 .. did the Pulmonologist who diagnosed you then do the follow ups with sputum cultures and Xray etc to compare any changes in your lungs? This is very important since those test show changes from 2014 to 2017.
@ling123, I would strongly advise you to read the past pages of our Forum, making notes as it says at the top of this page .. them come back with any questions you might have. You NEED to get an appointment with that Pulmonologist that diagnosed you ASAP if you are having those kinds of symptoms .. coughing up blood has a medical meaning. As you read these pages you will learn a GREAT deal about your disease .. AND knowledge is power .. you will learn how to be your own best advocate .. AND to BE you own advocate .. NOT to sit back! YOU must take care of that one body you are given in this lifetime .. so IT can then take care of you! @ling123, Please do keep coming back .. we will be here for you .. you are NOT alone .. we will walk this walk with you. Sending you a hug in this tough time! Katherine
Hi Katherine, my name is the first four letters of my handle: Ling. Thank you so very much for your kind words and your support. I have an appointment to see my pulmonary specialist whom I have been seeing for the past 2 1/2 years. I've had follow up visits with him, first every 3 months, then every 6 month, the last visit was a year after the previous one. I have been symptom free until today. I'm anxious to hear what he has to say about the second round. Fortunately this time around, there has been very little blood compared to the first time. The anxiety comes from the concern that it may turn into something other than MAC. I sure hope not. I will take your advice and start reading the posts from the beginning to get insights and learn more about this disease Thanks again for your making me feel welcome and at home.
Ling, I am SO glad you have that appt .. how soon is it? That is just the sequence I've always had .. 3mos/6mos/1yr .. DEPENDING on the test results and symptoms .. on my last 1 yr .. I jumped BACK to 3 mos due to symptoms .. so that is why it is important to have those check ups! For ME .. NOT for YOU .. the MINOR blood has come from a blood vessel issue due to Bronchiectasis .. NOT my MAC. So for me it has only been a minor amount of blood not the large amount you have had .. so if anyone on the Forum has experienced your situation I hope they jump in with their thoughts. As you read .. feel free to ask questions ... we are not doctors .. we can only speak from our own experiences .. but trust me .. I sure wish this Forum has been available when I was going through this journey .. wouldn't have felt so darn alone. Our family and friends love us .. but they really can't "get it" .. this Forum does .. that helps! Sending you a hug! Katherine
My appt is tomorrow morning. I emailed the doctor shortly after seeing blood in my mucus and his nurse emailed back with an appointment already made. I was worried that I would have to wait for who knows how long to get in to see him. I'm so glad I don't have to. You are so right about the "get it" part. Family and friends love us and are trying to provide support. But unless they have gone through it, they won't understand how scary and alone we can feel. I'm not alone anymore. I have my family right here. Thanks to you and this forum. 🙂
@ling123, Ling I am impressed that you got an appt so quickly .. so far I LIKE your doctor! Let us know how our appt goes .. sending you a Big Hug! Katherine
Good luck tomorrow. My husband spits up blood like you do, but he has sarcoid and bronchiolectasis. He was hospitalized once because it scared us all half to death. He can not take aspirin now at all as that was a contributing factor. Two of our children test positive for TB due to BCG (China) and were treated. They never spat up blood, but are checked for TB periodically. I am hoping your doctor's visit tomorrow will give you some answers and a plan. Irene
I, too, was diagnosed by coughing up blood. Ran to the ER where they were just going to send me home with a diagnosis of pneumonia. I advocated for myself, as this forum emphasizes, and asked to speak to a pulmonologist. Had a bronchoscopy to rule out MAI. Needless to say, it was "ruled in". I did not start treatment at that time. Years later, I had another incident of coughing up blood. Called my primary who told me to go to ER. That was a mistake as I just should have called my pulmonologist who would have asked "how much blood" and depending upon the response, simply put me on Avelox for ten days or so. When I was in the ER, the ER staff was clueless as to what to do. It was I who told them that I needed a CT scan. They then asked ME "with or without contrast?" Can you imagine how uninformed they were! Bottom line: you may cough up blood from time to time and it doesn't mean that you will start treatment simply as a result of that symptom. Certainly always call your pulmonologist.
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If you have not had a CT scan and a bronchoscopy, you might want to get one. MAC does not "cure" on its own. So glad you found this forum too. Irene