1. < MAC & Bronchiectasis

Treatment??

Posted by Cathln @Cathln, Apr 3, 2018

Hi, I have had MAC for at least 5 years..I also have bronchiectasis for years.. My bronchial tubes bleed on occasion and I am put on antibiotics for infection. Does anyone here have MAC, and has not had any treatment? I am not sick. I have not had ct scan for 2 years. I switched doctors, and feel like I am not any better off than I was with the old doctor. I have lost weight, and I am tired, but my son passed away suddenly, and I can't really cope with the loss. I have had 2 other mycrobacterium, abscessus, and kansasii, so I do now how sick I can get. I had part of right lung removed, and 18 months therapy. I always thought I was so lucky that I didn't have MAC..I saw plenty of women at National Jewish with it. Is treatment always started when MAC is found? My old doctor said it is like "moss on a tree" if it isn't hurting the tree, leave it alone. That is one reason, among many that I left. Sorry this is long. Thanks in advance for taking time and reading it. Cathln.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

irene5 Irene Estes | @irene5 | Apr 4, 2018
In reply to @jkiemen "I think that I have had depression and anxiety since my diagnosis.. I don't know how..." + (show)
@jkiemen

I think that I have had depression and anxiety since my diagnosis.. I don't know how you can't have at least some. It is hard to go from being completely healthy to knowing you have a chronic illness. I think I struggle with it every day. The Big 3 doses are always a reminder. I keep hoping I can get over that hump. Many other people learn to live with chronic conditions. I just don't think I have gotten there yet.

Jump to this post

Some days you think you are there and others not so much!

REPLY
Jane S. Brown | @macjane | Apr 4, 2018
In reply to @jkiemen "I think that I have had depression and anxiety since my diagnosis.. I don't know how..." + (show)
@jkiemen

I think that I have had depression and anxiety since my diagnosis.. I don't know how you can't have at least some. It is hard to go from being completely healthy to knowing you have a chronic illness. I think I struggle with it every day. The Big 3 doses are always a reminder. I keep hoping I can get over that hump. Many other people learn to live with chronic conditions. I just don't think I have gotten there yet.

Jump to this post

Thank you. I find I have such difficulty sleeping.

REPLY
Jane S. Brown | @macjane | Apr 4, 2018
In reply to @macjane "Irene, I never hear anybody speak of going through depression with MAC or bronchiectasis. It has..." + (show)
@macjane

Irene, I never hear anybody speak of going through depression with MAC or bronchiectasis. It has hit me with a bang but I had other things hit and learned about my younger brother who has been struggling with depression as well. I feel so ashamed of myself. You all seem so brave.

Jump to this post

Thank you.

REPLY
heathert | @heathert | Apr 4, 2018
In reply to @macjane "Irene, I never hear anybody speak of going through depression with MAC or bronchiectasis. It has..." + (show)
@macjane

Irene, I never hear anybody speak of going through depression with MAC or bronchiectasis. It has hit me with a bang but I had other things hit and learned about my younger brother who has been struggling with depression as well. I feel so ashamed of myself. You all seem so brave.

Jump to this post

@irene5 you are so right. If you are not coping @jkiemen go and get the meds, they work but sometimes take a wee while so be patient(not easy) If you are not eating or sleeping, it is so cruel. Thinking of you.

REPLY
Cathln | @Cathln | Apr 4, 2018
In reply to @ginak "Hi @Cathln I was diagnosed with MAI/MAC and bronchiectasis in Dec 2016 after coughing up blood..." + (show)
@ginak

Hi @Cathln I was diagnosed with MAI/MAC and bronchiectasis in Dec 2016 after coughing up blood and having a nodule removed from my left lobe. I haven’t been put on any antibiotics as I have no symptoms. I use an Aerobika for lung clearance twice a day to help with the bronchiectasis. There are others on this forum who also have not used the antibiotics and there are those that have. Some use natural remedies others use saline nebulizers to help clear the lungs. Everyone’s situation is different but we all have MAC in common. I’m so sorry about the loss of your son. I can only imagine how hard it must be for you. I believe our emotional health has so much to do with our physical health and well being. Wishing and praying for all the best for you.
Gina K.

Jump to this post

Thank you for your kind words Gina. Life is not the same, never will be, but i have 2 other children, although grown, they need me. I have a grandson and he is the reason I get up everyday. Thanks too, for your answer regarding lungs . Some days I honestly don't remember I have MAC, or bronchiectasis. I do have an aerobika aslo, but I have an easier time clearing my lungs just by laying on my back. I get so much out that way, then I am finished until the next day. I sit, and worry all day, and my mind went to my lungs. I know, I had surgery immediately when they found Kansasii...I was very sick. But, I don't feel like that at all, and I am happy I don't, but wondered too if I just had a rotten doctor. I had him 14 years, and he has done nothing, but say go home and live your life. So, as I am also allergic to th the one class of drugs that work on MAC, I worry about that too. I am seeing someone for my emotional health. Not doing very well, and it has started taking toll on health. I appreciate your answering. Thank you, Cathln.

REPLY
Cathln | @Cathln | Apr 4, 2018
In reply to @jkiemen "It took about 2.5 years after I was diagnosed before they started treating my MAC. They..." + (show)
@jkiemen

It took about 2.5 years after I was diagnosed before they started treating my MAC. They watched it by CT and when they started seeing changes that is when they started treatment. I mainly had throat congestion, an occasional dry cough. But you have been through allot. Loosing your son and all. Personally, maybe another CT at some time to monitor the situation could be in order. Grief could also be part of your weight loss. I am very sorry that you lost your son. Bring tears to my eyes. Praying for you.

Jump to this post

Thank you for your kindness. Yes, I am having a hard time, and I sit and think, so i wondered about my lungs and lack of treatment. i know how taxing it is on your body being on all those meds. I had 2 NTMs 12 years ago. Had surgery and 18 months of oral antibiotics and 9 months of IV, 2 times a day, 3 days a week. I am hoping for a new ct scan next visit. Haven't had one in 2 years. Thank you for your prayers. They work, and I need them. Thanks, Cathln

REPLY
Cathln | @Cathln | Apr 4, 2018
In reply to @egayle187 "@Cathln...Losing a child suddenly makes you very vulnerable to infection. It's a whole body reaction. I..." + (show)
@egayle187

@Cathln...Losing a child suddenly makes you very vulnerable to infection. It's a whole body reaction. I hope you will insist your doctor check sputum more often. I am sorry to hear about your struggle. I lost my son 45 years ago. It still hurts. There were no grief support groups then in our area, but there are now. I hope you will seek out a support group in your area. If you are not able to do so, there is a coping.org site online with evidence-based suggestions to help you. I can answer one question for you. MAC is not always treated. It depends on your specific lung problems. I hope you will hear from other members of this group. They have been very helpful.

Jump to this post

Thank you Gayle, I do see someone for grief, and I am on meds right now for anxiety. I'm sorry for the loss of your son also. it is a life long journey no one wants to travel. Thank you for your kindness. Cathleen

REPLY
Cathln | @Cathln | Apr 4, 2018
In reply to @irene5 "Losing a child is an unimaginable heartache. Don’t ask yourself why - it will only make..." + (show)
@irene5

Losing a child is an unimaginable heartache. Don’t ask yourself why - it will only make you crazy. I am so very sorry. I agree totally with what others have commented about “to treat or not to treat!” I have been on both of those journeys. What I will say is what my ID doctor told me. Good nutrition and less stress are key. She told me she advises her Aids patients to try guided meditation with the attitude of focusing on that one area of the body (lungs for us) that is diseased and to see it as whole and healthy. It kind of goes back to what I see as mind over matter, but basically our brains are very powerful, and if we can have that kind of focus in a meditative way then we have a chance of healing ourselves. She says it is scientifically based, and I do believe that. I am willing to do anything that will give me more time! God bless you real well. Sending you a hug and prayers.

Jump to this post

Thank you Irene, Good nutrition is the hardest part. I was doing well. I have had this 3rd NTM since at least 2012. I have lost a lot of weight and been sick with different illnesses since losing my son. That got me wondering why I am not being treated. I just sit and worry about it. I may look in to meditation. I have heard this before I'm sure i could learn to do it. Thank you for your prayers. I need them. Cathleen.

REPLY
Cathln | @Cathln | Apr 4, 2018
In reply to @ling123 "@Cathln First of all, I'm so sorry about your loss of your son. I can't imagine..." + (show)
@ling123

@Cathln First of all, I'm so sorry about your loss of your son. I can't imagine the pain and suffering you must be going through. About treatment for MAC, like @ginak , I was diagnosed with bronchiectasis and MAC after coughing up large amount of blood suddenly in fall of 2014. Besides that, I don't have any other lung problems and my lung condition has not been worsening since the diagnosis. So no drug treatment for me so far. I do have excess phlegm especially when I first get out of bed in the morning. I believe that is mostly the result of bronchiectasis. I agree with @ginak that everybody's situation is different. But in one way or another, everybody here has had their lungs compromised which leads to vulnerability to infections. In your situation, emotional stress can also lead to physical vulnerability. You need to see doctors who are very knowledgeable about bronchiectasis and MAC in order to keep your lung conditions under control. Hopefully others on this site are able to provide you with more suggestions and pointers. Wish you all the best.

Jump to this post

Thank you for your kind words. I do have an ID doctor and a new Pulmonary doctor. I haven't bleed in a while, but when i do it is a lot. My old doctor said unless its over a cup, don't call. I couldn't handle that. My new one puts me on antibiotic for infection. Has worked really well. I appreciate your answering my post. i do know I must find a way to eat healthier. It's been so very hard, but I have to try harder. Thank you, Cathln

REPLY
Sophie | @sophie1019 | Apr 5, 2018
In reply to @irene5 "Losing a child is an unimaginable heartache. Don’t ask yourself why - it will only make..." + (show)
@irene5

Losing a child is an unimaginable heartache. Don’t ask yourself why - it will only make you crazy. I am so very sorry. I agree totally with what others have commented about “to treat or not to treat!” I have been on both of those journeys. What I will say is what my ID doctor told me. Good nutrition and less stress are key. She told me she advises her Aids patients to try guided meditation with the attitude of focusing on that one area of the body (lungs for us) that is diseased and to see it as whole and healthy. It kind of goes back to what I see as mind over matter, but basically our brains are very powerful, and if we can have that kind of focus in a meditative way then we have a chance of healing ourselves. She says it is scientifically based, and I do believe that. I am willing to do anything that will give me more time! God bless you real well. Sending you a hug and prayers.

Jump to this post

Cathen loOK at it this way, it could be worse, at least you can still get around and do things. My ID doc told me some of her patients can't even get out of bed. So let's be thankful together...

REPLY
View MoreView Less
Please sign in or register to post a reply.