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tmmmrlts
@tmmmrlts

Posts: 27
Joined: Jan 07, 2019

Copd, pulmonary fibrosis, mac bacterial infection and honeycomb lung

Posted by @tmmmrlts, Mon, Jan 7 3:37pm

My husband has been diagnosed with all four of these and I just want to understand more about what is to be expected. And what I can do to help.

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He has to sleep laying on his stomach and he has to lay down a lot. His chest on his left side hurts a lot of the time. He can just be sitting there talking and he gets out of air. He doesn't want oxygen. He is 54 and we have been married 36 years. I just dont know what I can do. I pat on his back to try and break stuff loose and rub it to relax him.
His first lung dr gave up on him. He told him " he gave up on him because he hadn't quit smoking"
Now this lung dr is better he changed some med and is talking to a dr about a new treatment. But he started smoking and now that is delaying everything. We are trying to quit.

I am so sorry. He is so young. I smoked for 46 years. Your husband needs to choose – life or premature death. Give it up one cigarette at a time. The urge comes on so strong, but it goes away once you fight it. I love being a non-smoker. I no longer feel like I have leprosy. It has been 4 years and there are things I do miss about it, but I know/hope that my choice to stop will allow me more time with my kids and grandkids.

@kathydyd

I am so sorry. He is so young. I smoked for 46 years. Your husband needs to choose – life or premature death. Give it up one cigarette at a time. The urge comes on so strong, but it goes away once you fight it. I love being a non-smoker. I no longer feel like I have leprosy. It has been 4 years and there are things I do miss about it, but I know/hope that my choice to stop will allow me more time with my kids and grandkids.

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He has went down to 3-4 cigarettes a day now. We know we need to quit.

Does his doc have him on antibiotics for the MAC, and does he use a nebulizer and inhaler daily? I, too, have COPD, as well as asthma and was told I have MAC a couple years ago. When I have a flare up of respiratory infections, I have Ceftin 250 mg on hand to start taking for 5 days. Am so sensitive to many antibiotics that I take a child's dose and seem to get along okay with it. Have been taking Brovana, twice daily along with Alvesco inhaler afterwards. My doc is an asthma and allergy lung specialist and I've been going to him for about three and a half years now. Before starting with him, the former Pulmonary doc only had me do a CAT scan about every 3-6 months and I was constantly getting meds for bronchitis. Not familiar with honeycomb lung.

@baz10

Does his doc have him on antibiotics for the MAC, and does he use a nebulizer and inhaler daily? I, too, have COPD, as well as asthma and was told I have MAC a couple years ago. When I have a flare up of respiratory infections, I have Ceftin 250 mg on hand to start taking for 5 days. Am so sensitive to many antibiotics that I take a child's dose and seem to get along okay with it. Have been taking Brovana, twice daily along with Alvesco inhaler afterwards. My doc is an asthma and allergy lung specialist and I've been going to him for about three and a half years now. Before starting with him, the former Pulmonary doc only had me do a CAT scan about every 3-6 months and I was constantly getting meds for bronchitis. Not familiar with honeycomb lung.

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Yes he started him on 3200 mg 3 times a week and the new dr reduced it down to 2100 mg 3 times a week. Yes he's on a nebulizer and inhaler. They had him do a cat scan at the Er and then another dr at urgent care. Then when his dr left town. The new doctors had one done. He has been throwing up a lot and running fever. The honeycomb hasn't really been explained that good
I just know basically what I looked up

Honeycomb Lung

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In pathology, honeycomb lung refers to the characteristic appearance of variably sized cysts in a background of densely scarred lung tissue. Microscopically, enlarged airspaces surrounded by fibrosis with hyperplastic or bronchiolar type epithelium are present.

@tmmmrlts

He has went down to 3-4 cigarettes a day now. We know we need to quit.

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@tmmmrlts – Welcome to Mayo connect. One thing about this group is that we are an honest bunch! I agree with @kathydyd– Your husband needs to quit smoking ASAP. No one here will tell you that it's an easy thing to do. When I quit, 21 years ago I was smoking 2 packs of Marlboro reds. When I got home from my lobectomy my craving was pretty bad. My husband had emptied every ash tray and thrown them away. He told me, when I was in a weak moment of craving, "If you smoke, you'll die" That became my mantra and to this day I have not picked up a cigarette since the night I quit.
He has to do anything to quit, join a stop smoking group, patches, gum, whatever there is out there. Lots of hospitals have stop smoking programs.
Honey Comb Lungs are the appearance of lung that are filled with cysts.
https://emedicine.medscape.com/article/2078590-overview
I write a blog and here is the post about lung cancer and smoking that I wrote- It might help
https://my20yearscancer.com/smoking-and-lung-cancer/

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@tmmmrlts

Yes he started him on 3200 mg 3 times a week and the new dr reduced it down to 2100 mg 3 times a week. Yes he's on a nebulizer and inhaler. They had him do a cat scan at the Er and then another dr at urgent care. Then when his dr left town. The new doctors had one done. He has been throwing up a lot and running fever. The honeycomb hasn't really been explained that good
I just know basically what I looked up

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@tmmmrlts– Could he be sick to his stomach because of the infection or the antibiotic? What do his doctors say? I hear your frustration with not knowing what to do to help. Have the doctors explained everything clearly to you? Have you researched this? Knowledge is power and the more knowledge you have the more in control you will feel.

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@merpreb

@tmmmrlts– Could he be sick to his stomach because of the infection or the antibiotic? What do his doctors say? I hear your frustration with not knowing what to do to help. Have the doctors explained everything clearly to you? Have you researched this? Knowledge is power and the more knowledge you have the more in control you will feel.

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They think it is the antibiotics. Since his first lung dr left his regular dr has took him back down to the 20mg of his acid reflux Meds. So it could be a little of both.
Yes I have researched it.
But I'm not the smartest person when it comes to reading stuff. He is constantly telling me that with all his pain from his back and neck and his leg going numb then his lungs. That he doesn't know if it is worth it. He said he wishes it would go one way or the other. He doesn't care which way. Like this morning he told me he was hoping he didn't wake up.

awww- @tmmmrlts. That must have been very very upsetting to hear. I think that some counseling/therapy might be a good idea now. Would he be willing to try it? Do you think that his dr. would be willing to try another antibiotic?
With new things we are never "all that smart". Things are very difficult to understand in the medical field. When I first started researching my multifocal adenocarcinoma of the lung I said, "What…" Please ask your new doctor for help in understanding what you need to AND get help for your husband if he'll agree. Is he on any antibiotics?
We have a group called Depression and Anxiety: https://connect.mayoclinic.org/group/depression-anxiety/. Perhaps your husband would like to take a look? Talking to others who have similar problems can often snap a person out of the "dumps". Keep me posted!

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@merpreb

awww- @tmmmrlts. That must have been very very upsetting to hear. I think that some counseling/therapy might be a good idea now. Would he be willing to try it? Do you think that his dr. would be willing to try another antibiotic?
With new things we are never "all that smart". Things are very difficult to understand in the medical field. When I first started researching my multifocal adenocarcinoma of the lung I said, "What…" Please ask your new doctor for help in understanding what you need to AND get help for your husband if he'll agree. Is he on any antibiotics?
We have a group called Depression and Anxiety: https://connect.mayoclinic.org/group/depression-anxiety/. Perhaps your husband would like to take a look? Talking to others who have similar problems can often snap a person out of the "dumps". Keep me posted!

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I don't know but I will suggest it to him. I will

Please make sure your husband eats something before taking the antibiotic, ( if it won't hurt) and if he is taking other meds, could they be interacting with each other? I was taking Dexilant 60 mg daily and after awhile they were causing me some problems, so the doc said that perhaps he was "over" medicating me, so we went to Prevacid over the counter. If you are in Indiana, the Allergy/Asthma doc that I go to, is very good in Fort Wayne. It is depressing to get the word that one has lung issues, but I was in my early 30's when told that I had a heart syndrome. Thought that my world would come crashing down, but that was 40 years ago, and the diagnosis hasn't kept me from doing anything. Same when told about the lung issues. Take heart in knowing that a Higher Power has us in His care. Blessings to you and your husband.

@baz10

Please make sure your husband eats something before taking the antibiotic, ( if it won't hurt) and if he is taking other meds, could they be interacting with each other? I was taking Dexilant 60 mg daily and after awhile they were causing me some problems, so the doc said that perhaps he was "over" medicating me, so we went to Prevacid over the counter. If you are in Indiana, the Allergy/Asthma doc that I go to, is very good in Fort Wayne. It is depressing to get the word that one has lung issues, but I was in my early 30's when told that I had a heart syndrome. Thought that my world would come crashing down, but that was 40 years ago, and the diagnosis hasn't kept me from doing anything. Same when told about the lung issues. Take heart in knowing that a Higher Power has us in His care. Blessings to you and your husband.

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@baz10

Sorry I'm new to all this messaging. baz10 he does eat something, but it doesn't make any difference. Yes some of his medicine interact with the others I am going to talk to his dr about it. I know the pain meds do

They did a bunch of blood test and they called and said that 3 of them were normal, and she said the dr had the rest on his desk. What do they do expect us to just wonder what they mean his next appt. Isn't until Feb 26,

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