1. < MAC & Bronchiectasis
Mentor

The psychological aspect of dealing with bronchiectasis and MAC.

Posted by Terri Martin, Volunteer Mentor @windwalker, Jun 20, 2018

Whenever there is chronic illness, depression, and other phychological issues like anger, and low self esteem can creep into your life. Is this normal? How do we deal with that? I'd like to invite a fellow member, @megan123, a retired social worker; to join this conversation.

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 28, 2018
In reply to @cila "Terri M, What kind of saline do you used? Is there a generic or brand name..." + (show)
@cila

Terri M, What kind of saline do you used? Is there a generic or brand name of that? Also,have not have any e-mails from the group in a while. Did I get disconnected to the group? I got a call from my ID doctor saying I got 100 colonies. She said she will put me back on meds. I don't fell like too but I have been felling sick and tired, shortness of breath. Sometimes my back hurts too. Thank you so much!! Cila

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@cila Yikes! 100 colonies! No wonder you aren't feeling so good. Do they know what specie of mac you have? I am on 7% sodium chloride made by Pari it is called HyperSal 7% sodium chloride.

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ameliar | @ameliar | Oct 28, 2018

I first felt relief that I did not have lung cancer, I next felt denial, I next felt mad, Now I feel scared!! I am going to a new pulmonary doc on Fri and I have lots of questions.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 29, 2018

@ameliar, I am glad that you are going to your doctor's appointment fully armed with a list of questions. My doctor loves that I do that. I hate that you are scared, know that I am here for you any time. My doctor told me that I can live out a full life with this disease provided that I stay on top of it; which I do religiously. Do you know the extent of your disease?

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blm1007blm1007 | @blm1007blm1007 | Jul 21 1:52pm
In reply to @windwalker "@aflib You are so right about being strong in morning and weak in the afternoon. I..." + (show)
@windwalker

@aflib You are so right about being strong in morning and weak in the afternoon. I try to tackle the important things in the morning because by afternoon, I am horizontal. I am still trying to be more organized with meal planning and do more of the labor intensive parts in the morning. My husband does most of the cooking for evening meals, I mainly take care of the sides or else we'd never eat vegetables.

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Hello Terri- Wow this thread is from 2018 and you have had this BE routine for some time now.
I have been doing air way clearance since October of 2023 after going to NJH. I now go to Tyler. I came to this "thread" hoping to see if it was just me, if it is something even younger people experience........meaning ones energy level good in the morning and way down in the early afternoon. I am 81 and 9 months into life, and was doing great until recently with the energy level. I am careful with my diet and take basic vitamin supplements....so....It was bothering me as to why this was happening when just a few months ago my energy level was good all day long. I guess all that goes along with Bronchiectasis and does affect ones energy level. I also believe this heat, even if one is indoors, adds to the decreased energy leve. So many aspects of life change with this condition and especially combined with Hiatial Hernia/Acid Reflux added in that many of us have to deal with. It helps me to know that it is probably the BE routine etc. that is helping to zap my energy level and not my 81+ years.

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1 reply
sadies1mom | @sadies1mom | Jul 21 10:27pm
In reply to @jkiemen "@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that..." + (show)
@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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I have found it to be life altering, physically as well as emotionally. For me, it is a huge disappointment because I'm simply not a well person and I always have been. I was an athlete. Now I have overwhelming fatigue and a lot of damage in my lungs from MAC and Bronchiectasis .
On the other hand, when the radiologist read the first CT scan and reported it was highly suspicious of metastatic disease, Recommending a pet scan, I thought I probably had lung cancer. That was so profoundly sad. So I'm just thankful that I can live with this MAC lung disease.
But it's had a huge impact on my life.

REPLY
1 reply
reneemc | @reneemc | Jul 22 10:58am

After receiving the MAC and BE diagnosis, I went through the darkest time of my life. The most difficult to accept. Fear an panic attacks.
As far as the pain goes it’s constant in the front lower lobes and mid back. I take lots of prescription pain meds and I’m getting a nerve block soon.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 22 10:59am
In reply to @blm1007blm1007 "Hello Terri- Wow this thread is from 2018 and you have had this BE routine for..." + (show)
@blm1007blm1007

Hello Terri- Wow this thread is from 2018 and you have had this BE routine for some time now.
I have been doing air way clearance since October of 2023 after going to NJH. I now go to Tyler. I came to this "thread" hoping to see if it was just me, if it is something even younger people experience........meaning ones energy level good in the morning and way down in the early afternoon. I am 81 and 9 months into life, and was doing great until recently with the energy level. I am careful with my diet and take basic vitamin supplements....so....It was bothering me as to why this was happening when just a few months ago my energy level was good all day long. I guess all that goes along with Bronchiectasis and does affect ones energy level. I also believe this heat, even if one is indoors, adds to the decreased energy leve. So many aspects of life change with this condition and especially combined with Hiatial Hernia/Acid Reflux added in that many of us have to deal with. It helps me to know that it is probably the BE routine etc. that is helping to zap my energy level and not my 81+ years.

Jump to this post

I just thought I would let you know, as is sometimes the case, Teri (@windwalker) has not been active with us for several months.
But I can let you know that, absolutely, BE can affect your energy level - even if you do not have an active infection. So, be kind to yourself and rest as you must. For 2 weeks, I thought that I was my old self again, and filled my time with way too many active days. Then reality caught up with me, and I had a day when I could barely stay awake. I remembered that the old me is gone for good, and slept for most of 24 hours. This week I am going to carefully measure out my activities so I don't crash again.
I have learned that somewhere between 4 and 5 pm is the end of my day, and I must have dinner planned and ready to go. If we have an evening date, I may even take a nap!

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Jul 23 9:53am
In reply to @sueinmn "I just thought I would let you know, as is sometimes the case, Teri (@windwalker) has..." + (show)
@sueinmn

I just thought I would let you know, as is sometimes the case, Teri (@windwalker) has not been active with us for several months.
But I can let you know that, absolutely, BE can affect your energy level - even if you do not have an active infection. So, be kind to yourself and rest as you must. For 2 weeks, I thought that I was my old self again, and filled my time with way too many active days. Then reality caught up with me, and I had a day when I could barely stay awake. I remembered that the old me is gone for good, and slept for most of 24 hours. This week I am going to carefully measure out my activities so I don't crash again.
I have learned that somewhere between 4 and 5 pm is the end of my day, and I must have dinner planned and ready to go. If we have an evening date, I may even take a nap!

Jump to this post

Thank you Sue for seeing to it that my post had a reply. Wish we all felt better than we do....however...., as with all things, changes happen and there are always good days and bad days in many aspects of life. In reality I think it is a combination, for me, of different factors that have often during the week, day, caused me to feel as if I am dragging and have to sit down....the BE and including nights when I couldn't sleep through the night or couldn't fall back to sleep. Again, thanks for letting me know that yes BE can affect our energy level.
Wishing you good days with the energy to do some of the things you not only need to do but want to do.

REPLY
Rick | @rstel7272 | Jul 24 7:18am
In reply to @sadies1mom "I have found it to be life altering, physically as well as emotionally. For me, it..." + (show)
@sadies1mom

I have found it to be life altering, physically as well as emotionally. For me, it is a huge disappointment because I'm simply not a well person and I always have been. I was an athlete. Now I have overwhelming fatigue and a lot of damage in my lungs from MAC and Bronchiectasis .
On the other hand, when the radiologist read the first CT scan and reported it was highly suspicious of metastatic disease, Recommending a pet scan, I thought I probably had lung cancer. That was so profoundly sad. So I'm just thankful that I can live with this MAC lung disease.
But it's had a huge impact on my life.

Jump to this post

I also crossed that potential cancer to MAC bridge and thanked my creator. I am my 6th year of this "new" life and appreciate life more than ever and strangly, no longer fear death

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