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johnnyv46
@johnnyv46

Posts: 8
Joined: May 17, 2016

Lung volume

Posted by @johnnyv46, May 19, 2016

My lung volume is 15%. I didn’t ask doctor what this means out of fear, about a week ago. All he said was its “bad “. I left office and I am fearful to really research this. Please respond positively ( you know what I mean) what should I expect?

Liked by Elsinann

REPLY

Hi @johnnyv46, welcome to Connect. Sometimes fear can paralyze us. I get that. But only by asking questions can we find answers to get help. That’s why I’m glad you had the courage to ask your question here on Connect today.

I’m inviting fellow Connect members @katemn @elsinann @Paula_MAC2007 @pd02 @nadine66 into this discussion. They all are dealing with a lung condition of one type or another and have experienced lower lung capacity.

Johnny, what lung condition do you have? Tell us a bit more about yourself.

I understand your fear, Johnny. I’m sorry that your doctor didn’t go into detail. Sometimes it’s better to know exactly how we are…in my case, the imagination notches things up more than necessary. Is it harder for you to take a breath when you’re flat on your back in bed? A thick pillow or two under your head will let you take a deeper breath. It takes a couple of nights to get used to, but you will. Are you saying your lung capacity is 15% of normal? Did your doctor give you a spirometer to exercise your lungs with, to increase their capacity? Good luck, Friend! Elsin Ann

Hello Johnny, I don’t know about you .. but I have always felt that “knowledge is power”. I am a pretty logical person .. but If I know what I am dealing with .. I can research .. figure out what is the best pathway for me to follow and then push ahead. I have 3 lung diseases .. my husband is Stage 4 cancer .. because of our journeys I have had to do a LOT of research .. decision making about the best way to go. It just plain helps me to “take charge” .. it takes away the fear .. and I have had fear PLENTY of times .. don’t kid yourself .. we all have. I love what I was told one time .. “It is like being in a canoe between two islands. You can’t see the island you left behind .. you can’t see the island ahead .. it is scary as all get out .. but all you can do is paddle like h—!” But the great thing about life is .. we DO get to that other island .. IF we do paddle like crazy! Do what we know we need to do to get to that other island!

If I was sitting in your shoes .. I would sit myself down .. write down the questions you have .. ask the pros and cons of each options the doctors presents
and then decide what option is best for YOU! Remember .. nobody cares about your health .. your body as much as you do.

Johnny, I am glad you have found this Forum .. keep us posted .. we are here for you .. sending you positive energy and a BIG hug! Katherine

Hey @johnnyv46. It’s great that you found yourself here and brave of you to reach out. As others have expressed, I think many here can relate to the fear of visiting the doctor. New information can be overwhelming, but asking questions is ultimately a step that can help us become more empowered and knowledgable about our health. By asking lots of questions, you can work together with your doctor to get an accurate diagnosis and devise a treatment plan that will be a fit for you and your preferences.

Sometimes just knowing what questions to ask is a place to start. Here are some examples of questions to ask about lung health. Maybe this is of help.

Here are some questions to ask your pulmonologist, respiratory therapist, or other member of your pulmonary care team about your lung condition. Print this page, check off the questions you would like answered, and take it with you to your appointment.

– Do you suspect my symptoms are related to an obstructive lung disease, such as asthma or COPD, or to a restrictive lung disease, such as pulmonary fibrosis or lung cancer?
– What is the name of the lung disease you suspect is responsible for causing my respiratory symptoms? Is this condition known by any other names?
– What types of diagnostic tests will be performed to confirm or rule out this diagnosis (e.g., pulmonary function tests, chest x-ray, CT scan)?
– How should I prepare for these diagnostic tests? How long will the tests take? Will the results of these tests be available immediately? If not, how long will it take to get the results? Should I call, or will someone contact me?
– Is my condition acute or chronic?
– What complications may develop as a result of my condition?
– What will be the course of treatment? Can my condition be controlled with medication, such as inhalers, cough medicines (e.g., expectorants), or antibiotics?
– What are the common side effects of these medications and what should I do if I experience severe side effects? If medication is ineffective, what other treatment options are available?
– Are there any complementary and alternative medicine (CAM) therapies that may be used to treat my condition?
– How often should I be seen for follow-up appointments and pulmonary function testing?
– Where can I find more information about my lung disease? Can you recommend a local or online support group for patients with lung disease?

– See more at: http://www.healthcommunities.com/evaluating-lung-problems/questions-to-ask-doctor.shtml#sthash.SElGFz9T.dpuf

@caretothepeople

Hey @johnnyv46. It’s great that you found yourself here and brave of you to reach out. As others have expressed, I think many here can relate to the fear of visiting the doctor. New information can be overwhelming, but asking questions is ultimately a step that can help us become more empowered and knowledgable about our health. By asking lots of questions, you can work together with your doctor to get an accurate diagnosis and devise a treatment plan that will be a fit for you and your preferences.

Sometimes just knowing what questions to ask is a place to start. Here are some examples of questions to ask about lung health. Maybe this is of help.

Here are some questions to ask your pulmonologist, respiratory therapist, or other member of your pulmonary care team about your lung condition. Print this page, check off the questions you would like answered, and take it with you to your appointment.

– Do you suspect my symptoms are related to an obstructive lung disease, such as asthma or COPD, or to a restrictive lung disease, such as pulmonary fibrosis or lung cancer?
– What is the name of the lung disease you suspect is responsible for causing my respiratory symptoms? Is this condition known by any other names?
– What types of diagnostic tests will be performed to confirm or rule out this diagnosis (e.g., pulmonary function tests, chest x-ray, CT scan)?
– How should I prepare for these diagnostic tests? How long will the tests take? Will the results of these tests be available immediately? If not, how long will it take to get the results? Should I call, or will someone contact me?
– Is my condition acute or chronic?
– What complications may develop as a result of my condition?
– What will be the course of treatment? Can my condition be controlled with medication, such as inhalers, cough medicines (e.g., expectorants), or antibiotics?
– What are the common side effects of these medications and what should I do if I experience severe side effects? If medication is ineffective, what other treatment options are available?
– Are there any complementary and alternative medicine (CAM) therapies that may be used to treat my condition?
– How often should I be seen for follow-up appointments and pulmonary function testing?
– Where can I find more information about my lung disease? Can you recommend a local or online support group for patients with lung disease?

– See more at: http://www.healthcommunities.com/evaluating-lung-problems/questions-to-ask-doctor.shtml#sthash.SElGFz9T.dpuf

Jump to this post

Thank you for your thoughtful response. I will be going for a battery of lung tests on May 31, 2016 and will better understand what 15% lung capacity means in the overall scheme of things as it relates to my empyema.
I’ll will keep you posted and again thank you.
John

@colleenyoung

Hi @johnnyv46, welcome to Connect. Sometimes fear can paralyze us. I get that. But only by asking questions can we find answers to get help. That’s why I’m glad you had the courage to ask your question here on Connect today.

I’m inviting fellow Connect members @katemn @elsinann @Paula_MAC2007 @pd02 @nadine66 into this discussion. They all are dealing with a lung condition of one type or another and have experienced lower lung capacity.

Johnny, what lung condition do you have? Tell us a bit more about yourself.

Jump to this post

Thank you for your thoughtful response. I will be going for a battery of lung tests on May 31, 2016 and will better understand what 15% lung capacity means in the overall scheme of things, as it relates to my empyema.
I’ll will keep you posted and again thank you.
John

@katemn

Hello Johnny, I don’t know about you .. but I have always felt that “knowledge is power”. I am a pretty logical person .. but If I know what I am dealing with .. I can research .. figure out what is the best pathway for me to follow and then push ahead. I have 3 lung diseases .. my husband is Stage 4 cancer .. because of our journeys I have had to do a LOT of research .. decision making about the best way to go. It just plain helps me to “take charge” .. it takes away the fear .. and I have had fear PLENTY of times .. don’t kid yourself .. we all have. I love what I was told one time .. “It is like being in a canoe between two islands. You can’t see the island you left behind .. you can’t see the island ahead .. it is scary as all get out .. but all you can do is paddle like h—!” But the great thing about life is .. we DO get to that other island .. IF we do paddle like crazy! Do what we know we need to do to get to that other island!

If I was sitting in your shoes .. I would sit myself down .. write down the questions you have .. ask the pros and cons of each options the doctors presents
and then decide what option is best for YOU! Remember .. nobody cares about your health .. your body as much as you do.

Johnny, I am glad you have found this Forum .. keep us posted .. we are here for you .. sending you positive energy and a BIG hug! Katherine

Jump to this post

Thank you for sharing your story. I will ponder what you said especially the “It is like being in a canoe between two islands”.
I’ll remember this.
Thank you and God bless.
John

@katemn

Hello Johnny, I don’t know about you .. but I have always felt that “knowledge is power”. I am a pretty logical person .. but If I know what I am dealing with .. I can research .. figure out what is the best pathway for me to follow and then push ahead. I have 3 lung diseases .. my husband is Stage 4 cancer .. because of our journeys I have had to do a LOT of research .. decision making about the best way to go. It just plain helps me to “take charge” .. it takes away the fear .. and I have had fear PLENTY of times .. don’t kid yourself .. we all have. I love what I was told one time .. “It is like being in a canoe between two islands. You can’t see the island you left behind .. you can’t see the island ahead .. it is scary as all get out .. but all you can do is paddle like h—!” But the great thing about life is .. we DO get to that other island .. IF we do paddle like crazy! Do what we know we need to do to get to that other island!

If I was sitting in your shoes .. I would sit myself down .. write down the questions you have .. ask the pros and cons of each options the doctors presents
and then decide what option is best for YOU! Remember .. nobody cares about your health .. your body as much as you do.

Johnny, I am glad you have found this Forum .. keep us posted .. we are here for you .. sending you positive energy and a BIG hug! Katherine

Jump to this post

Hello John, I am so glad this little story helped you .. I know that it helped me at various times in my journey! When times get tough I’ll remind myself of that story .. and know that this too shall pass and I will see that island ahead .. and I will trust in my Higher Power that whatever is ahead I will be able to handle. That I am not given more than I have the strength and wisdom to deal with at any given time. Sending you a Big Hug! Katherine

@johnnyv46 I hope the testing day went alright yesterday. I’m sure you were exhausted today. It just leaves one worn out. Please let us know what you learned if you’re comfortable with that.

Hello Friend,
I hope you update on your recent appointments. So many of us with lung damage feel isolated when those around us hear our words but do not translate what it actually feels like to not be able to breathe. You have lots of people here who understand the fear and stress. I have had very low lung capacity from past lung damage and anytime I have an infection. I sleep upright, which is ok, I’m used to it. I meditate, use only natural products, and do gentle yoga and gentle exercise in general, which really helps me. I am praying for you, you are never alone. A loving God and Angels are watching over you. With Love : )

@jms7

Hello Friend,
I hope you update on your recent appointments. So many of us with lung damage feel isolated when those around us hear our words but do not translate what it actually feels like to not be able to breathe. You have lots of people here who understand the fear and stress. I have had very low lung capacity from past lung damage and anytime I have an infection. I sleep upright, which is ok, I’m used to it. I meditate, use only natural products, and do gentle yoga and gentle exercise in general, which really helps me. I am praying for you, you are never alone. A loving God and Angels are watching over you. With Love : )

Jump to this post

Thank you for your reassuring words. I will keep you in my prayers, along with all the inflicted people in the world.
I have been working with a physical therapist twice a week. I have a set of easy, but effective exercises that I do daily. It has made me so much better, physically and mentally. It gave me self-confidence and ,some, much needed , peace of mind.
Will you share with me what your lung capacity is? If not, I understand.
You have a good day for yourself and God bless you.

John

Hey @johnnyv46 Nice to “see” you. I love it when members upload a picture on their profile. Just seeing the ocean behind you makes me breathe deeper. What encouraging news that you are now seeing a physical therapist twice a week and that the exercises have benefit beyond physical health. Keep up the great work. It inspires many to do the same.

@jms7

Hello Friend,
I hope you update on your recent appointments. So many of us with lung damage feel isolated when those around us hear our words but do not translate what it actually feels like to not be able to breathe. You have lots of people here who understand the fear and stress. I have had very low lung capacity from past lung damage and anytime I have an infection. I sleep upright, which is ok, I’m used to it. I meditate, use only natural products, and do gentle yoga and gentle exercise in general, which really helps me. I am praying for you, you are never alone. A loving God and Angels are watching over you. With Love : )

Jump to this post

Hello John, just LOVED seeing your photo with the gorgeous ocean behind you .. you go fella! Love it! I am SOOOO happy for you that you are just plain taking charge .. working with a physical therapist .. finding serenity .. so happy for you! I was blessed with a friend getting me started working out at age 30 so when the MAI/MAC hit me I was really in pretty darn good shape . Truthfully I don’t have a clue what my lung capacity is .. I looked over my November 2015 testing from Mayo Clinic .. really didn’t know what to look for. Frankly I rely on Dr. Aksamit to put “the puzzle” together and figure out what needs to be done with my treatment plan .. that is how much I trust him at this point.

All I know is that at age 73 I can hop on my Nordic Track and go at it for 30 minutes while I watch something on Netflix .. and then do my yoga after. I have an attitude of gratitude for that. While I was really sick with the MAI/MAC and before I went on the meds I was coughing so badly that I strained my back and didn’t work out for several years .. really just got out of the habit. Amazed that I COULD get out of the habit after so many years of doing it. But am now back at it and happy to be more active.

Again, John .. so happy you are so active and doing so well! Sending you a big hug! Katherine

@jms7

Hello Friend,
I hope you update on your recent appointments. So many of us with lung damage feel isolated when those around us hear our words but do not translate what it actually feels like to not be able to breathe. You have lots of people here who understand the fear and stress. I have had very low lung capacity from past lung damage and anytime I have an infection. I sleep upright, which is ok, I’m used to it. I meditate, use only natural products, and do gentle yoga and gentle exercise in general, which really helps me. I am praying for you, you are never alone. A loving God and Angels are watching over you. With Love : )

Jump to this post

Katherine,
You are such an inspiration. Now I understand something about your condition and like they say “never assume anything”.
I didn’t understand, my fault, what MAI/MAC was all about and just assumed you had, end stage emphysema. I like being “taken to school”, as they say, 🙂 because I didn’t realise, the many different kinds of afflictions of the pulmonary system there are.
So you opened my eyes and I’ am grateful.
Your lung capacity probably doesn’t have any relevance to my condition..
Thank you for making me slow down and read more, carefully and comprehencelly; a must, when researching.
You have a wonderfull day, Katherine. God bless.
John

Thank you for the kind words. They do not fall on deaf ears.
John

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