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 .

Will the VA approve it

REPLY
@colleenyoung

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?

Jump to this post

I am going for my first consult Thursday. If the first appointment goes well then I believe there will be a series of tests to determine if I really am a candidate or not. It could be weeks/months before I know.

I believe the procedure takes about an hour and it is a 5 day stay in the hospital. They keep you that long for observation in case of complications.

I will be sure to post about it.

REPLY
@walkro9

Will the VA approve it

Jump to this post

I don’t know about the VA. There aren’t that many hospitals doing it yet. I am sure in time more and more hospitable will offer it.

REPLY
@clipper

I don’t know about the VA. There aren’t that many hospitals doing it yet. I am sure in time more and more hospitable will offer it.

Jump to this post

I would wondering if they would take on a test patient that can’t afford the procedure, I had a broncostamie done n I got a fungal infection that almost killed me, before I had the procedure I could breathe and know I can’t n I went from 110 lbs to my regular weight n I have a very strong heart that kept me going I’ll do anything to

REPLY
@walkro9

I would wondering if they would take on a test patient that can’t afford the procedure, I had a broncostamie done n I got a fungal infection that almost killed me, before I had the procedure I could breathe and know I can’t n I went from 110 lbs to my regular weight n I have a very strong heart that kept me going I’ll do anything to

Jump to this post

You could talk to your pulmonologist, maybe they can help you locate a hospital doing the Zephyr valve procedure in your area. That is how I would go about it.

REPLY
@walkro9

I would wondering if they would take on a test patient that can’t afford the procedure, I had a broncostamie done n I got a fungal infection that almost killed me, before I had the procedure I could breathe and know I can’t n I went from 110 lbs to my regular weight n I have a very strong heart that kept me going I’ll do anything to

Jump to this post

@walkro9 and @clipper – I know that it seems redundant but please use a person's name at the beginning of each conversation. There are so many posts that after a while it gets confusing. Thank you

REPLY
@merpreb

@walkro9 and @clipper – I know that it seems redundant but please use a person's name at the beginning of each conversation. There are so many posts that after a while it gets confusing. Thank you

Jump to this post

Rob walker when I get up I need a Xanax n a shot of morphine just to get out of bed

REPLY

@merry I did meet with Dr Criner at Temple U Lung Center today regarding the Zephyr valves. I was informed that Medicare does cover the cost of the procedure. The process to determine if a person is a good candidate is a bit involved. Based on the first meeting I might be a candidate, now have to go through a long list of tests before there is a final decision.

This procedure is for people with emphysema who have a problem with residual air volume, hyper inflated lungs. It is basically lung volume reduction surgery without the surgery.

REPLY

@clipper– Excellent news! What a wonderful chance for you to get back into a more comfortable active life! A lot of people will benefit leaning more about the procedure and tests- everything about it!

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

Hello Clipper@Clipper. I do realize there are no approved treatments or procedures available in the United States for COPD. Many Dr's in America are offering to do these procedures over the border in Mexico and charging $12 to $15 thousand dollars per treatment and claim you will need at least 3 treatments. Many hospitals and Clinics in Mexico are offering Umbilical stem cell treatments in Mexico and other Countries for $3,000 to $5,000 and tell you 1 treatment is sufficienent. There are a lot of fakes out there so I really have to do my homework. Many have gone over the border for hip, knee and shoulder procedures and many have had great success. Not all but just like other treatments not all work for all people.

REPLY
@justapril

Hello Clipper@Clipper. I do realize there are no approved treatments or procedures available in the United States for COPD. Many Dr's in America are offering to do these procedures over the border in Mexico and charging $12 to $15 thousand dollars per treatment and claim you will need at least 3 treatments. Many hospitals and Clinics in Mexico are offering Umbilical stem cell treatments in Mexico and other Countries for $3,000 to $5,000 and tell you 1 treatment is sufficienent. There are a lot of fakes out there so I really have to do my homework. Many have gone over the border for hip, knee and shoulder procedures and many have had great success. Not all but just like other treatments not all work for all people.

Jump to this post

@justapril Hi, there are approved procedures in the US just not stem cell therapy as of yet. The existing stem cell therapies do not work and because there have been no valid clinical studies the potiential risks are unknown. It is unproven science, people should not be wasting money they need to pay medication that does help.

REPLY

@clipper– Hello. This is very interesting. Are there studies that you can point me to that indicate that they don't work? I'd love to read more about this procedure.

REPLY
Please sign in or register to post a reply.