Asthma, COPD, CVID and MAC

Posted by bennb023 @bennb023, Jul 25, 2019

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?

@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?

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

@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?

REPLY
@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"

Jump to this post

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!

REPLY
@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?

Jump to this post

@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.

REPLY
@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.

Jump to this post

@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.

REPLY
@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.

Jump to this post

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.

REPLY

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

REPLY

@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.

REPLY
@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.

Jump to this post

@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.

REPLY
@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

Jump to this post

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!

REPLY

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

REPLY
Please sign in or register to post a reply.