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?

@joelars

@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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Joelars. Wonderful news. I have a nodule on my right lung. Been there for at least ten years. They watch it every year and it never changes. I forget about it. It’s normal for a GP to refer but I have had a problem finding a good one. Stay strong. Keep running and eat right. You have many years to enjoy. God bless.

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@joelars – Yeah! A pulmonologist is the doctor who you should see because of your COPD. It is a progressive disease.

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@merprep I saw him for 1 consult last year. He told me it doesn't necessarily progress, more than normal aging, with some people,and it wasn't progressing much with me, and if it does there is nothing he can do except palliative care. .Beyond pain meds or tranquilizers I wouldn't be a good candidate for what they offer. I'm only seeing him in anticipation of future infections. He may be better than a GP in that context. Unfortunately I have a very bad attitude with pulmonology and COPD. From my flawed perspective, I only see them making us better cripples. I hope I don't offend anyone and I'd love to hear someone who disagrees give me good reasons to alter my opinion.

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@joelars

@merprep I saw him for 1 consult last year. He told me it doesn't necessarily progress, more than normal aging, with some people,and it wasn't progressing much with me, and if it does there is nothing he can do except palliative care. .Beyond pain meds or tranquilizers I wouldn't be a good candidate for what they offer. I'm only seeing him in anticipation of future infections. He may be better than a GP in that context. Unfortunately I have a very bad attitude with pulmonology and COPD. From my flawed perspective, I only see them making us better cripples. I hope I don't offend anyone and I'd love to hear someone who disagrees give me good reasons to alter my opinion.

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@jo54 @merprep Thanks, I hope I wasn't too judgemental., I know I can't change the course of "the disease" but it's important that I choose my response to its effects. I want to appear healthy and active and not let the disease dictate my activity levels. Even if it's more appearance than reality, when I'm in the gym or on the track (especially the former) people see me as normal, healthy and I feel closer to that image. More importantly, I feel like I'm not passively taking the beating from the disease. Each day I run. and lift, and practice yoga, and I know I have the disease yet, it doesn't define me-I didn't empower it. And who knows, if I maintain this level of fitness maybe something medically will come around and I'll be in the best position to utilize it.

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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 a bacterial infection that prays on people with existing lung conditions. It is very difficult to treat and came back for me. Cvid is a defective immune system which I treat weekly with subq infusions. Pneumonia is an infection that frequently efeefectsvpeoplw with low immune systems as well as the general population. Hope that help!

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Doctor says I have asthma does that bring on shortness of breath

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Some day my chest feels like my lungs are splitting

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Thaking breaths

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@trellg132

Doctor says I have asthma does that bring on shortness of breath

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@trellg132– Yes, it most certainly can and it can be serious if you do not take care of it with proper meds. You are already taking care of yourself. You can appear healthy and have asthma too. Do you know anything about it?
Here is a wonderful break down from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/asthma/symptoms-causes/syc-20369653

Liked by trellg132

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@merpreb

@joelars – @benn023.
There are variants to all of these diseases and some can be fatal.

Pneumonia is a virus or bacterial infection that usually goes away with treatments.
https://www.mayoclinic.org/diseases-conditions/pneumonia/symptoms-causes/syc-20354204

COPD is a chronic inflammatory of the lungs which restricts breathing. Right now there are no cures and it is progressive.
https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679

MAC is a bacterium that can hit people with immune problems.
MAC is primarily a pulmonary pathogen that affects individuals who are immune compromised (eg, from AIDS, hairy cell leukemia, immunosuppressive chemotherapy). In this clinical setting, MAC has been associated with osteomyelitis; tenosynovitis; synovitis; and disseminated disease involving the lymph nodes, the CNS, the liver, the spleen, and the bone marrow
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@merpreb had my allergy tests. I didn't react to any allergens. Ironic, I'm so healthy, except I ruined my lungs. They gave me one spirometer test- blowing out as hard as you can. They use a visual, a tree with leaves with the goal to blow off the leaves. I was able to do it easily, so it must of been easy.
One productive thing came from the exam: the doc said he wasn't surprised I got pneumonia 2x because the vaccine I got only protects against 1 strain. He sent me for a blood test where they test my immune systems reaction to various pneumonia strains. He claims that will tell them the type of vaccine to use when I hit 65 (3 more months), and that vaccine will be more likely to succeed. Have you, or anyone in th group, heard of that type of blood test.?

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@joelars– Good morning. I have not heard of this type of test. My pharmacy and PCP keep track of what vaccinations I need. Perhaps start a small journal of shots you need? Here is an email from AARP about just this. https://www.aarp.org/health/drugs-supplements/info-2019/immunization-quiz-shots-vaccines.html

What's the best way for you to keep track of what you have or need for the future?

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