COPD/ Emphysema

Posted by redsox @redsox, May 29, 2018

Confused by PFT so much to absorb ! What are the treatments for Mild, Moderate and Severe .

Liked by debbmol62

on phone last year with Mayo

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@marczappa – Do you have any idea what department you spoke with?

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@merpreb the only site I look at often is https:/www.clinicaltrials.gov/ct2/show/NCT04047810?term=stem +cells&recrs=ab&cond=copd&rank=1
the sites I feel are reputable say the same-the trials aren't successful. The best study came out of sweden. the trial used otherwise, very fit copd sufferers and found the cell infusions greatly slowed or maybe halted the disease progression. In a few patients, new small-cell growth was seen, but it may not have been significant growth. I'm afraid they have a long way to go before figuring out what else to do in addition to the stem cell infusions to start the regeneration process. But even in this early phase of the experimental process some people may catch small improvements, that has happened.

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it was Sept 2018. I had a phone consultation. Don't remember the nurse name. She was to put me on a list for future stem cell research as that is what I originally
inquired about

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@marczappa

it was Sept 2018. I had a phone consultation. Don't remember the nurse name. She was to put me on a list for future stem cell research as that is what I originally
inquired about

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@marczappa– I used the search tab on Connect, at the top of the home page. I hope that this brings you where you want to be.
https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/lung-regeneration
Please let me know if it's the right place. If not where would they suggest you call? What department?

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fOUND THE OLD E MAIL. Contains some links from Charleeen

Hi Mr. Daniel,
It was so nice speaking with you today. As promised, here are the resources that we discussed.

ISSCR RESOURCES:
http://www.closerlookatstemcells.org/patient-resources/#handbook
http://www.closerlookatstemcells.org/stem-cells-and-medicine/nine-things-to-know-about-stem-cell-treatments
http://www.closerlookatstemcells.org/stem-cells-and-medicine/stem-cell-treatments-what-to-ask

Mayo Clinic Pulmonary Research phone #: PULMONARY RESEARCH: 800-753-1606

COPD Foundation:
https://www.copdfoundation.org/Research/COPD-Patient-Powered-Research-Network/COPD-PPRN-Why-you-should-enroll.aspx
https://www.copdfoundation.org/Take-Action/COPD-Policy-Issues/COPD-Foundation-Position-on-Stem-Cell-Therapy.aspx

Please let me know if there is anything else I can do for you.

Best,
Charlene

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@marczappa

fOUND THE OLD E MAIL. Contains some links from Charleeen

Hi Mr. Daniel,
It was so nice speaking with you today. As promised, here are the resources that we discussed.

ISSCR RESOURCES:
http://www.closerlookatstemcells.org/patient-resources/#handbook
http://www.closerlookatstemcells.org/stem-cells-and-medicine/nine-things-to-know-about-stem-cell-treatments
http://www.closerlookatstemcells.org/stem-cells-and-medicine/stem-cell-treatments-what-to-ask

Mayo Clinic Pulmonary Research phone #: PULMONARY RESEARCH: 800-753-1606

COPD Foundation:
https://www.copdfoundation.org/Research/COPD-Patient-Powered-Research-Network/COPD-PPRN-Why-you-should-enroll.aspx
https://www.copdfoundation.org/Take-Action/COPD-Policy-Issues/COPD-Foundation-Position-on-Stem-Cell-Therapy.aspx

Please let me know if there is anything else I can do for you.

Best,
Charlene

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@marczappa – Wow, thank you for these links. As I look into them for myself too, I'm wondering, have you called each one?

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are the links for copd-please advise

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@colleenyoung

Hi @redsox, welcome to Connect.
I'd like to introduce to other members on Connect talking about COPD and emphysema. Please meet @robertjr @oldkarl @waterboy @ppeschke @cognac @littleonefmohio @sneakerss @jo54 @crashnam and @penlee. You can read more about them in these discussions:

– copd end stage https://connect.mayoclinic.org/discussion/copd-end-stage/
– Just wanted to say hello. Have congestive heart failure & COPD https://connect.mayoclinic.org/discussion/just-wanted-to-say-helllo/
– Howdy fellow worriers: Questions about lung biopsy for COPD https://connect.mayoclinic.org/discussion/howdy-fellow-worriers-i-speak-mainly-for-myself-ive-got-a-bunch/
– Palpitations & Emphysema https://connect.mayoclinic.org/discussion/palpitations-emphysema/

Redsox, you mentioned that understanding Pulmonary Function Testing (PFT) can be so confusing. Here's some information about it https://www.healthline.com/health/pulmonary-function-tests

What questions would you like to ask other members about PFT? Have you had the test done or are you preparing for it?

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Hi, I have COPD & Pulmonary Hypertension and a 75% Paralyzed Diaphragm and they put me in for a sleep study and said no sleep apnea but i do stop breathing at night?? they haven't told me much but my Medicaid ins doesn't pay for treatment and i have a long list of other Problems with fatty Liver and AKI and CHF .. is there anything i can do to get any treatment ?? Dr Google already has me with one foot in the Grave 🙁 what is Life Expend ency without treatment ? Please someone help me with Knowledge .

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@debbmol62

Hi, I have COPD & Pulmonary Hypertension and a 75% Paralyzed Diaphragm and they put me in for a sleep study and said no sleep apnea but i do stop breathing at night?? they haven't told me much but my Medicaid ins doesn't pay for treatment and i have a long list of other Problems with fatty Liver and AKI and CHF .. is there anything i can do to get any treatment ?? Dr Google already has me with one foot in the Grave 🙁 what is Life Expend ency without treatment ? Please someone help me with Knowledge .

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@debbmol62 – Good afternoon Deb. Boy talk about a mixed message about breathing at night! Did you them for a clarification? I feel that it's very important that you understand every bit of the results of your tests, scans and treatments because then you will know what is wrong, or right. And where to go from there. I know nothing about health insurance so I can not address that here.
However if you wouldn't mind answering a few questions for me, I will see if I can help you. I have COPD from lung cancer and smoking. I am treated with inhalers. What treatments in the past have you had for COPD? Which kind of doctor has been treating you? When did you begin to have problems?

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@llwortman

Hello BlueHealer: I am a lung cancer survivor or 10 years and 7 months and never smoker . Definitely see your Mayo Clinic Pulmonologist. It may be helpful to think about paced breathing, Mindfulness and Resiliency training with Dr Amit Sood. After
lung cancer surgery I was afforded an amazing opportunity to be in his research study that I personally felt helped save my life
with what is now in a several books, "Happiness" is one of my favorites.
The program took me from pursed lip breathing while walking very slow, heal toe, heal toe, to accomplishing running three years
later. I have been running and bicycling since. Please understand, I clearly understand the fear factor of not being able to take a
deep breath. In the last few years there have been remarkable medical advances in the world of lung research. It's all about getting the proper care and proper diagnosis. All my best,

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who wrote Happiness? Thanks!!

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@merpreb

@debbmol62 – Good afternoon Deb. Boy talk about a mixed message about breathing at night! Did you them for a clarification? I feel that it's very important that you understand every bit of the results of your tests, scans and treatments because then you will know what is wrong, or right. And where to go from there. I know nothing about health insurance so I can not address that here.
However if you wouldn't mind answering a few questions for me, I will see if I can help you. I have COPD from lung cancer and smoking. I am treated with inhalers. What treatments in the past have you had for COPD? Which kind of doctor has been treating you? When did you begin to have problems?

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you might want to look into zephyr valves.

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@debbmol62

Hi, I have COPD & Pulmonary Hypertension and a 75% Paralyzed Diaphragm and they put me in for a sleep study and said no sleep apnea but i do stop breathing at night?? they haven't told me much but my Medicaid ins doesn't pay for treatment and i have a long list of other Problems with fatty Liver and AKI and CHF .. is there anything i can do to get any treatment ?? Dr Google already has me with one foot in the Grave 🙁 what is Life Expend ency without treatment ? Please someone help me with Knowledge .

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you may want to ask doctor about zephyr valves

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@girlbybay

who wrote Happiness? Thanks!!

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Happiness was written by Dr Amit Sood .

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@merpreb I just reviewed my lab work testing my immune system against pneumonia virus/bacteria: My blood work shows normal resistance to the 26 strains of pneumonia.
In theory, I'm immune to pneumonia, in practice it ain't so.
Is it possible contracting the disease multiple times accomplished what the vaccine couldn't-protect me from the disease?

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