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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)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..."
@chinasmom Becky I really like your idea of the cell phone photos! Personally I also purchased on Amazon a 2year calendar that I maintain ONLY as what I call my "Health Diary". In it I put any new symptom, notes, prescription start/stop .. any details regarding my health. I just started it last year and intend to continue it indefinitely. It will be a good history as time goes on. Hope all these things help our Members. Hugs to all! Katherine
@128128terry11t, Terry, OH what GREAT advice .. SAD but true. Clueless is the absolute word! I always jokingly say "I can even pronounce it now" .. the very fast pronounce the actual words for MAC .. nobody hardly has even heard of it .. even medical people! SO luckily you knew what to do AND DID advocate for yourself! EVERYONE on this MAC Forum MUST continue to educate themselves .. advocate for themselves .. AND continue to support each other on this shared journey .. THAT is how we remain strong .. together! Thank you for sharing that story .. it may help another Member AVOID just such an issue! Hugs! Katherine
Becky and Katherine, thank you for your concern and for sharing information. I saw the pulmonary specialist today. He had ordered a chest X-ray to be taken before he saw me. He then compared the X-rays from 2 1/2 years ago when MAC was first diagnosed, the X-ray done when I went in for followup a month ago and the newest one. He said there was a slight change in the newest image but considering that I had had a bad cold that affected my lungs, he was not surprised. But he couldn't see any suspicious development other than the conclusion that it looks like I'm having an infection which should be taken care of. He suggested a 10-day regimen of antibiotics. If the bloody mucus clears up and my condition is restored to prior to the blood episode, then he would see me again in 6 months. But if my condition does not improve or worsens, let him know right away. I'm fine with that. Becky, I can't imagine what you are going through. All I have is coughing up blood, no rash, swelling and thrush. I'm pretty much functioning as I would have without the MAC, although not the first time. That was way too much blood and too frequently to go to work or even go outside the house. This time around, I can keep all my plans.
@ling123 Great news!! Yay!
Good luck with your appointment. Coughing up blood was definitely very scary for me too. Especially since I was on blood thinners. I didn't know what was happening! But no meds for me yet since I have no other symptoms. This forum has been very helpful and informative for me. I've really learned so much and everyone is very helpful to each other.
Gina
Thank you, @ginak. Hopefully you won't have other symptoms except coughing up blood. That's what was like for me when I was first diagnosed. Seeing blood out of the blue was really shaking me up. This time around, though, I must have caught something which eventually went into my lungs. So I have to be on antibiotics for the next 10 days.
@ling123 Ling what GREAT news! Since your Xray looks ok .. and you are feeling ok .. going back for a check up in 6 months .. I am completely comfortable with your situation .. it sound just fine! As he said .. just be aware of your symptoms .. aware of your body .. other than that just live your life .. have fun and be happy! Keep us posted .. we are happy for you! Hugs! Katherine
@katemn Thanks again, Katherine, for all you do for the forum that pulls us together and helps us form the kind of comradery that we are not able to find elsewhere. I totally agree with you. We can't let this disease get us down. Love your advice which can't come from anyone who has not been through what we have been through, no matter how much they love us. I'm a happy person and stay very active and eat healthy. I just need to be aware of the symptoms and contact my pulmonary specialist as soon I feel that something does not feel right. At least this time around, there was no big scare and the pit in my stomach as I already know what is going on with me. That is actually a very good feeling. Have a great day. Will keep everybody posted of my progress.
@ling123, Ling .. THIS is you and MANY people's answer in a nutshell! A GREAT philosophy for those of us with our health issues to live by .. love your philosophy! " I'm a happy person and stay very active and eat healthy. I just need to be aware of the symptoms and contact my pulmonary specialist as soon I feel that something does not feel right.' Do keep us posted .. AND jump in when you see a newcomer that you might help .. there is always someone that you are ONE step ahead of on our shared journey! Hugs to you! Katherine
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@ling. Im glad you got that appointment today. For me i have a hard time admitting to myself the seriousness of my own situation and acting on it promtly. My first symptom was coughing up blood but when they asked how much and how long i couldnt say for sure. So im trying to get better . I now take a picture of my symptoms (blood streaked sputum, a rash, swelling in my hands and feet, thrush) with my cell phone and take it with me to my appointment. It also keeps track of the date the picture was taken. Probably best to keep a diary, but not always feasible. Have a great day!
Becky