Terri Martin, Volunteer Mentor | @windwalker | Dec 22, 2017
@jenblalock, Hi Jen. From what I have read, it is a progressive disease, but, progresses at different rates for different individuals. The better you take care of yourself and stay on top check-ups; you can slow down the progression. I believe it all comes down to genetics. Some will progress no matter what, while others will live the rest of their lives with only a mild case of bronchiectasis. More than likely, the mac or other organisms we can catch will take us down when we are old and feeble before the bronchiectasis will, (according to my doctor) When you have annual spirometric tests done over the years, they can gage at what rate your lungs may be deteriorating. Mine deteriorated at a steady decline over the past 10 years, I had a pulmonologist do the formula (because I asked) and he said I would most like die at age 58. I just turned 59 and I don't believe I am leaving this earth any time soon. I asked my doctor at Mayo to do the calculation (because such a formula does exist. It is called B.O.D.E.) as to what kind of time I may have left and he refused to do it. He said he does not believe in doing those tests because he believes that the mind is powerful, and that you can think yourself well, or you can think yourself dead. Also, with merging new treatments on the horizon: that test may no longer be accurate. From what I am told, mine is declining at a minimal rate at the present. Plus, there are so many variables. One thing in our favor, we are all on this forum because we care about our health and are diligent about regaining it. You would be surprised at the amount of people who do not take their health seriously, or go to the doctors, or stay on a treatment plan. Those are the kinds of people that make the stats look bad for us.
@jenblalock, Hi Jen. From what I have read, it is a progressive disease, but, progresses at different rates for different individuals. The better you take care of yourself and stay on top check-ups; you can slow down the progression. I believe it all comes down to genetics. Some will progress no matter what, while others will live the rest of their lives with only a mild case of bronchiectasis. More than likely, the mac or other organisms we can catch will take us down when we are old and feeble before the bronchiectasis will, (according to my doctor) When you have annual spirometric tests done over the years, they can gage at what rate your lungs may be deteriorating. Mine deteriorated at a steady decline over the past 10 years, I had a pulmonologist do the formula (because I asked) and he said I would most like die at age 58. I just turned 59 and I don't believe I am leaving this earth any time soon. I asked my doctor at Mayo to do the calculation (because such a formula does exist. It is called B.O.D.E.) as to what kind of time I may have left and he refused to do it. He said he does not believe in doing those tests because he believes that the mind is powerful, and that you can think yourself well, or you can think yourself dead. Also, with merging new treatments on the horizon: that test may no longer be accurate. From what I am told, mine is declining at a minimal rate at the present. Plus, there are so many variables. One thing in our favor, we are all on this forum because we care about our health and are diligent about regaining it. You would be surprised at the amount of people who do not take their health seriously, or go to the doctors, or stay on a treatment plan. Those are the kinds of people that make the stats look bad for us.
@windwalker Thanks for the information, Terri. I never heard of B.O.D.E. I looked it up, here is what I found: "...the BODE Index accounts for how COPD affects your life. Here's what the BODE Index stands for: body mass, airflow obstruction, dyspnea and exercise capacity". My pulmonary doctor did not calculate B.O.D.E. But he did order a comprehensive lung function test. The result was normal. I do not have problems with breathing even when I exercise or play tennis or climb stairs. And my body mass is within normal range. So I guess I don't have to worry too much about the calculation of B.O.D.E. index for now. But it is an invaluable information to file away in case my condition worsens.
new be ,, my wife has MAC & is on transplantation list at emery . SHE HAS SOME BEST DOC IN Atlanta She just came off 22 month corst of ant/b that should have got read of the MAC so SHE IS GOING TO GO WITH TRANS, IS there any new meds she should try >>> don't have notes with me or I would be more pacific anynhelp help would be gritty app, ,
I just had an appointment yesterday and asked my doctor whether my bronchiectasis would become progressively worse (am 67 and was diagnosed 10 months ago). He said that I could expect it to remain stable if I continue to exercise and eat a healthy diet. I don't know if this would depend on individual cases, though.
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@jenblalock, Hi Jen. From what I have read, it is a progressive disease, but, progresses at different rates for different individuals. The better you take care of yourself and stay on top check-ups; you can slow down the progression. I believe it all comes down to genetics. Some will progress no matter what, while others will live the rest of their lives with only a mild case of bronchiectasis. More than likely, the mac or other organisms we can catch will take us down when we are old and feeble before the bronchiectasis will, (according to my doctor) When you have annual spirometric tests done over the years, they can gage at what rate your lungs may be deteriorating. Mine deteriorated at a steady decline over the past 10 years, I had a pulmonologist do the formula (because I asked) and he said I would most like die at age 58. I just turned 59 and I don't believe I am leaving this earth any time soon. I asked my doctor at Mayo to do the calculation (because such a formula does exist. It is called B.O.D.E.) as to what kind of time I may have left and he refused to do it. He said he does not believe in doing those tests because he believes that the mind is powerful, and that you can think yourself well, or you can think yourself dead. Also, with merging new treatments on the horizon: that test may no longer be accurate. From what I am told, mine is declining at a minimal rate at the present. Plus, there are so many variables. One thing in our favor, we are all on this forum because we care about our health and are diligent about regaining it. You would be surprised at the amount of people who do not take their health seriously, or go to the doctors, or stay on a treatment plan. Those are the kinds of people that make the stats look bad for us.
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6 Reactions@windwalker Terri, Thank you for that response. It was both enlightening and uplifting.
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2 Reactions@windwalker Thanks for the information, Terri. I never heard of B.O.D.E. I looked it up, here is what I found: "...the BODE Index accounts for how COPD affects your life. Here's what the BODE Index stands for: body mass, airflow obstruction, dyspnea and exercise capacity". My pulmonary doctor did not calculate B.O.D.E. But he did order a comprehensive lung function test. The result was normal. I do not have problems with breathing even when I exercise or play tennis or climb stairs. And my body mass is within normal range. So I guess I don't have to worry too much about the calculation of B.O.D.E. index for now. But it is an invaluable information to file away in case my condition worsens.
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2 ReactionsJust something I came across that is interesting. http://www.rtmagazine.com/2015/06/bronchiectasis-linked-lower-risk-lung-cancer-copd-patients/
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2 ReactionsWow! That is strange. I wonder if they'll do more research on this?
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2 Reactions@jenblalock Sure hope they will.
@ling123......interesting....thanks for posting! Tdrell
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1 Reactionnew be ,, my wife has MAC & is on transplantation list at emery . SHE HAS SOME BEST DOC IN Atlanta She just came off 22 month corst of ant/b that should have got read of the MAC so SHE IS GOING TO GO WITH TRANS, IS there any new meds she should try >>> don't have notes with me or I would be more pacific anynhelp help would be gritty app, ,
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1 ReactionI would think a knowledgeable Infectious Disease MD would know what she should be trying.
I just had an appointment yesterday and asked my doctor whether my bronchiectasis would become progressively worse (am 67 and was diagnosed 10 months ago). He said that I could expect it to remain stable if I continue to exercise and eat a healthy diet. I don't know if this would depend on individual cases, though.
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Hug
2 Reactions