COPD and Emphysema: Want to connect with others

Posted by redsox @redsox, May 29, 2018

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

Marc, I have asked that question at mayo Rochester… their repl was it is being worked on, not FDA approved so insurance won't cover..and is an expensive gamble.

REPLY

I've heard both good results and bad, even the good results are not long lasting and most insurance don't cover at this time, as I suffer from end stage COPD and wish something would help reverse the damage

REPLY
@marczappa

Just joined to try and see if COPD/ Asthma, Emphysema can be helped by Stem Cell treatments . While medication has helped somewhat I am uncomfortable and short of breath most of the time.

Jump to this post

Hi @marczappa
It can be really difficult to tell which stem cell therapies and regenerative medicine practices are effective and which institutions are offering evidence-based proven therapies. In fact, recently the Food and Drug Administration (FDA) released a stern warning against unproven stem cell therapies. The FDA issued these two press statements: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm and https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573431.htm.

To help people learn more about the proven therapies and the promise of developing therapies, Mayo Clinic offers a free telephone consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.

REPLY
@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?

Jump to this post

there is a vibrating vest that works well, and a vibrating hand held breathing device also not much for cure as of yet besides lung replacement.

REPLY
@marczappa

Just joined to try and see if COPD/ Asthma, Emphysema can be helped by Stem Cell treatments . While medication has helped somewhat I am uncomfortable and short of breath most of the time.

Jump to this post

marczappa curious to know if you ever found an answer to this question as I too just asked about stem cell treatments?

REPLY
@justapril

marczappa curious to know if you ever found an answer to this question as I too just asked about stem cell treatments?

Jump to this post

I am going to jump in here. At this time time there are no legitimate, effective FDA approved stem cell treatments. Unfortunately the private companies that offer stem cell treatments are not proven to be effective nor are they proven to be safe. There are lawsuits and the FDA is attempting to shut them down. Here are links to official statements on stem cell treatment by reliable trustworthy organizations…

American Lung Association https://www.lung.org/our-initiatives/research/about-our-research/stem-cell-therapy.html
COPD Foudnation https://www.copdfoundation.org/Take-Action/COPD-Policy-Issues/COPD-Foundation-Position-on-Stem-Cell-Therapy.aspx
FDA https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm
And an assembly of world wide organizations https://www.thoracic.org/members/assemblies/assemblies/rcmb/working-groups/stem-cell/resources/statement-on-unproven-stem-cell-interventions-for-lung-diseases.pdf

There is legitimate stem cell research being done so we might have an option in the future but unfortunately not today.

REPLY

There is a new treatment. FDA approved, ZEPHYR VALVES… GOOGLE IT. The procedure places one way, exhale, in damaged lung making it resembling lung volume reduction surgery without surgical intervention. It will require about 5 days in the hospital.

REPLY

@waterboy– Good morning- This has been on the market for about 8 months. I'm not sure how beneficial this has been or how many people it's been used on. It is for sever emphysema. There are a lot of contraindications but I couldn't find how well it is doing. Any idea what the cost has been?

REPLY
@merpreb

@waterboy– Good morning- This has been on the market for about 8 months. I'm not sure how beneficial this has been or how many people it's been used on. It is for sever emphysema. There are a lot of contraindications but I couldn't find how well it is doing. Any idea what the cost has been?

Jump to this post

I know someone that is getting the valves on Wednesday. I have an appointment with Dr Criner at Temple University Lung this Thursday. I will pass on what I learn.

It is for severe to very severe emphysema. https://www.atsjournals.org/doi/10.1164/rccm.201803-0590OC
This article mentions heterogeneous emphysema but they are also using them on patients with homogenous emphysema.

REPLY
@clipper

I am going to jump in here. At this time time there are no legitimate, effective FDA approved stem cell treatments. Unfortunately the private companies that offer stem cell treatments are not proven to be effective nor are they proven to be safe. There are lawsuits and the FDA is attempting to shut them down. Here are links to official statements on stem cell treatment by reliable trustworthy organizations…

American Lung Association https://www.lung.org/our-initiatives/research/about-our-research/stem-cell-therapy.html
COPD Foudnation https://www.copdfoundation.org/Take-Action/COPD-Policy-Issues/COPD-Foundation-Position-on-Stem-Cell-Therapy.aspx
FDA https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm
And an assembly of world wide organizations https://www.thoracic.org/members/assemblies/assemblies/rcmb/working-groups/stem-cell/resources/statement-on-unproven-stem-cell-interventions-for-lung-diseases.pdf

There is legitimate stem cell research being done so we might have an option in the future but unfortunately not today.

Jump to this post

Thanks for jumping in @clipper. You're absolutely right. I appreciate your posting these links. I hate to see people throw money at unproven treatments. It is so hard to accept that the promise of regeneration medicine isn't ready yet.

Where evidence shows effectiveness, FDA approval can be expedited, like for the Zephr valves.
– FDA Approves Zephyr Endobronchial Valve For Treating Severe Emphysema https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/1391/FDA-Approves-Zephyr-Endobronchial-Valve-For-Treating-Severe-Emphysema.aspx

All the best with the procedure and yes, please return to tell us about your experience. How long are you expected to be in the hospital?

REPLY
@clipper

I know someone that is getting the valves on Wednesday. I have an appointment with Dr Criner at Temple University Lung this Thursday. I will pass on what I learn.

It is for severe to very severe emphysema. https://www.atsjournals.org/doi/10.1164/rccm.201803-0590OC
This article mentions heterogeneous emphysema but they are also using them on patients with homogenous emphysema.

Jump to this post

Thank you @clipper. This is valuable information and gives hope to everyone with emphysema!

REPLY

thanks for the tip bill going there now.

REPLY
Please sign in or register to post a reply.