Asthma, COPD, CVID and MAC

Posted by bennb023 @bennb023, Thu, Jul 25 1:21pm

I am 63 yrs old and have been dealing with asthma, copd, Mac, and CVID. I do pretty well and am still working full time. Any others have MAC?

@merpreb I'd like to say yes to your rhetorical question, but I'd only be lying. This time, rather than stick the script for the lung scan in the glove box and ignore it for months, I scheduled a ct (with contrast) for thursday (just got the script today). I already regret that act of naive optimism. Man plans, God laughs.

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@joelars

Hi @benn023 My diagnosis was pneumonia. I completed antibiotic treatments. the follow up x ray showed a small area of infiltrate which the doc said is lingering pneumonia. He prescribed antibiotics. I just finished those and I'm scheduled for the follow up ct next week. My question is what is the difference between pneumonia and CVOD and MAC

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Mac is mycobacterium avium complex which is a different bacteria than the ones that cause pneumonia

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@joelars

@merpreb I'd like to say yes to your rhetorical question, but I'd only be lying. This time, rather than stick the script for the lung scan in the glove box and ignore it for months, I scheduled a ct (with contrast) for thursday (just got the script today). I already regret that act of naive optimism. Man plans, God laughs.

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@joelars – This cliche might be trite but it's true-"Better Safe than Sorry."

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@merpreb
I get the "sorry" part but "safe"?

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@joelars

@merpreb
I get the "sorry" part but "safe"?

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@joelars – Safe to mean, in this sense, that by getting tested you rule out an immediate concern instead of not being tested and chancing being ill and not knowing. I think that we disagree on this matter. But that's fine, don't you agree?

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@merpreb of course I agree.
The docs saved your life through timely testing. In my (much less dramatic) case my concerns are the tests. I fear the docs have little to offer and will only find things they can't hep me with.

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@merprep I had the ct with scan Thursday morning. this time, I didn't hear anything until now. My doctor's receptionist texted me telling me they just got the results. All she said is there is nothing urgent BUT, the doctor wants to see me when it is convenient for me, "within the next 4 weeks". I told him asap. I'm waiting for their response. In the meantime, I feel good. I don't know what could be wrong? When I asked the CT tech how long it takes to get the results she told me that when the radiologist suspects something serious in the scan they'll get the results to the doctor right away. If not it takes several days.

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@joelars

@merprep I had the ct with scan Thursday morning. this time, I didn't hear anything until now. My doctor's receptionist texted me telling me they just got the results. All she said is there is nothing urgent BUT, the doctor wants to see me when it is convenient for me, "within the next 4 weeks". I told him asap. I'm waiting for their response. In the meantime, I feel good. I don't know what could be wrong? When I asked the CT tech how long it takes to get the results she told me that when the radiologist suspects something serious in the scan they'll get the results to the doctor right away. If not it takes several days.

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I meant ct with contrast.

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@joelars

@merprep I had the ct with scan Thursday morning. this time, I didn't hear anything until now. My doctor's receptionist texted me telling me they just got the results. All she said is there is nothing urgent BUT, the doctor wants to see me when it is convenient for me, "within the next 4 weeks". I told him asap. I'm waiting for their response. In the meantime, I feel good. I don't know what could be wrong? When I asked the CT tech how long it takes to get the results she told me that when the radiologist suspects something serious in the scan they'll get the results to the doctor right away. If not it takes several days.

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@joelars– These mysterious messages I know are playing on you! You'll hear back, or just ask to speak with him?

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@merprep I told him I want to see him asap. He booked me for tomorrow morning.
I can't know for sure what is wrong but I can be assured it is bad. If it wasn't, he would have told me over the phone. Instead he insisted on me coming in to discuss "future plans". I don't understand how he can say it isn't "urgent" and I can come in anytime within 4 weeks.
I wish I never went for the testing. I don't suppose it would make a difference in the end but at least I would have felt better until the disease was more advanced. I was feeling alright until his text to come in. Now, I feel sick and I don't believe I'll gain any advantage from this earlier diagnosis. For me, it is better to refuse testing, until the illness is undeniable then go into an emergency room to get the formal diagnosis, allowing me to check into hospice, and hopefully I wouldn't have to spend much time there.
Any ideas on how to spend this end of life period productively?

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@joelars

@merprep I told him I want to see him asap. He booked me for tomorrow morning.
I can't know for sure what is wrong but I can be assured it is bad. If it wasn't, he would have told me over the phone. Instead he insisted on me coming in to discuss "future plans". I don't understand how he can say it isn't "urgent" and I can come in anytime within 4 weeks.
I wish I never went for the testing. I don't suppose it would make a difference in the end but at least I would have felt better until the disease was more advanced. I was feeling alright until his text to come in. Now, I feel sick and I don't believe I'll gain any advantage from this earlier diagnosis. For me, it is better to refuse testing, until the illness is undeniable then go into an emergency room to get the formal diagnosis, allowing me to check into hospice, and hopefully I wouldn't have to spend much time there.
Any ideas on how to spend this end of life period productively?

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Joelars you will do it as the rest of of us do. One day at a time. If your doctor said four weeks don’t think you’re in hospice tomorrow. Give yourself a break. Be thankful you have a doctor who wants to work with you. You have many prayers in your direction. Let us know what is happening after doctor. We care.

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@jo54

Joelars you will do it as the rest of of us do. One day at a time. If your doctor said four weeks don’t think you’re in hospice tomorrow. Give yourself a break. Be thankful you have a doctor who wants to work with you. You have many prayers in your direction. Let us know what is happening after doctor. We care.

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@jo54 thank you. I appreciate your kindness.
What do the rest of you do when you have so little time? I'm afraid I won't do this terminal stage very well. I am resistant to what is the natural process.
I didn't even know I was that sick. This week-end I had some of the best runs and workouts I've had in years.
Maybe I'm taking an unnecessarily pessimistic view. I googled early detection (I assume it's early because I wasn't told in the previous scans) of lung cancer and one site said there is a 90% chance for a 5 year survival. It didn't mention the quality of life. All the sites agreed that I should begin treatment asap. What is the reason for a 4 week delay? Isn't the sooner the better? He is my GP. He can only refer me to an oncologist. Why wouldn't he do that now?

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@joelars

I read that cvid and mac are autoimmune diseases that may be but don't have to be related to copd. Is this true and if so does this mean that unlike copd it may be curable"

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Cvid is not an autoimmune diseases and mac is a bacteria. Cvid is not curable but you live with it thanks to subq immunoglobulin. I infuse weekly. I have not been successful in getting rid of the Mac, but am stable and no longer treating with the big 3 antibiotics!

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@joelars

@merprep I told him I want to see him asap. He booked me for tomorrow morning.
I can't know for sure what is wrong but I can be assured it is bad. If it wasn't, he would have told me over the phone. Instead he insisted on me coming in to discuss "future plans". I don't understand how he can say it isn't "urgent" and I can come in anytime within 4 weeks.
I wish I never went for the testing. I don't suppose it would make a difference in the end but at least I would have felt better until the disease was more advanced. I was feeling alright until his text to come in. Now, I feel sick and I don't believe I'll gain any advantage from this earlier diagnosis. For me, it is better to refuse testing, until the illness is undeniable then go into an emergency room to get the formal diagnosis, allowing me to check into hospice, and hopefully I wouldn't have to spend much time there.
Any ideas on how to spend this end of life period productively?

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@joelars – Let me know what he says. If you just did the best runs that you've done in a while then I don't think that your time being greeted at the "Pearly Gates" will be anytime soon. I don't know how to help you stop your dooms day thinking. I wish that I could because you will eventually make yourself ill.

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@merpreb

@joelars – Let me know what he says. If you just did the best runs that you've done in a while then I don't think that your time being greeted at the "Pearly Gates" will be anytime soon. I don't know how to help you stop your dooms day thinking. I wish that I could because you will eventually make yourself ill.

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@merprep @jo54 you are right I'm not dying soon, or at least I don't have cancer. As the infection cleared up, they found a small mass. It is a non cancerous nodule.
As expected, I was referred to a pulmonologist because of the lung infections, and as my GP put it just for better information on my COPD its consequences.
I'm relieved that I don't have cancer, and I feel better now that the infection is gone. I don't see what good a pulmonologist will do. I think my GP just got scared and needed to unload my unsolvable lung issues to a specialist.
Thank you for your help and kindness.

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