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 .

@joelars

To Justapril
how much is the 300 million and where is the procedure done? Are they posting results, if so where?
Realize, the success achieved with lab mice was not achieved using umbilical stems but adult lung stems (as I interpreted the article). So, it may be (and this is pure speculation) that the health of the stem cells is the issue, not necessarily the age, and that in many COPD patients they have areas of relatively, healthy stem cells that can be used to produce millions more.
Can anyone with medical knowledge clarify?

Jump to this post

@joelars I am planning to go to dream body clinic in Puerto Vallarta, Mexico. I believe the cost for 300 million stem cells is $8,000 and I would be there at least 4 days. So far they appear to be the best rated clinic for cleansliness, quality and cost. If you decide to go there joelars please let me know what you think. What are you having treatment for if you don't mind me asking??

REPLY

@justapril– Good morning. I love Puerto Vallarta for vacations. But I'm worried about going out of the country for stem cell implantation. In America there hasn't been enough research to even consider it a trust worthy treatment. I haven't heard anything about Mexico being a mecca of medical breakthroughs, so why would you chose to go there?. I don't want to lecture but sometimes when we feel desperate or we think that some thing sounds too good..to be true, it often is.
Please please be careful and really think about this. Have you talked about this with your family or doctors?

REPLY
@merpreb

@justapril– Good morning. I love Puerto Vallarta for vacations. But I'm worried about going out of the country for stem cell implantation. In America there hasn't been enough research to even consider it a trust worthy treatment. I haven't heard anything about Mexico being a mecca of medical breakthroughs, so why would you chose to go there?. I don't want to lecture but sometimes when we feel desperate or we think that some thing sounds too good..to be true, it often is.
Please please be careful and really think about this. Have you talked about this with your family or doctors?

Jump to this post

Great advice

REPLY
@waterboy

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.

Jump to this post

I read that yesterday it's FDA approved I wonder does most insurance cover that and there is a risk they say collapsed lung do you know of anyone who had it done.

REPLY
@clipper

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.

Jump to this post

Temple Lung Center in Philadelphia Pennsylvania

REPLY
@debora29

Temple Lung Center in Philadelphia Pennsylvania

Jump to this post

It is FDA approved but it's also clinical trail does have risk factor collapsed lung

REPLY
@debora29

I read that yesterday it's FDA approved I wonder does most insurance cover that and there is a risk they say collapsed lung do you know of anyone who had it done.

Jump to this post

Welcome @debora29– Yes within the past year and it is exciting but it isn't a promise for everyone. Trials have shown mixed reviews with successes. I think that it depends on what caused your emphysema and your prognosis. I have to tell you that when I googled it the information that I think you want was very difficult to pin point because it is so new. So I encourage you to google it so you can pinpoint what you want to know. The valves actually look like a little high end glass lamp shade.
The following is what I picked out for you to review but it is by no means close to what we might all want to know. I'm not suppose to share any adds because this site is neutral to products but one of these sites might be an ad only because it was one of few sites that I found had good information.
There have been successes but there have been failures too. Please use caution when reaching out for something that might be new like this, unless of course your doctor recommends it. And as you point out is does have it's side effects. Let me know if this is the way you want to go. Have you discussed this with your doctor?

https://mylungsmylife.com/ https://erj.ersjournals.com/content/44/Suppl_58/P3713

REPLY

Saw some promising information in a Mayo Clinic news article that some of you might be interested in…

Mayo Clinic Offers New Hope to Patients With COPD – April 18, 2019
https://intheloop.mayoclinic.org/2019/04/18/mayo-clinic-offers-new-hope-to-patients-with-copd/

REPLY
@johnbishop

Saw some promising information in a Mayo Clinic news article that some of you might be interested in…

Mayo Clinic Offers New Hope to Patients With COPD – April 18, 2019
https://intheloop.mayoclinic.org/2019/04/18/mayo-clinic-offers-new-hope-to-patients-with-copd/

Jump to this post

Thank you John- This has been on the COPD site and some people have actually going to get one or have already. Thank you

REPLY
@waterboy

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.

Jump to this post

I know mayo does this but does UAB?

REPLY

looking for cbd oil that works well. also get a Philips respironics side stream plus mouthpiece for faster meds intake IT'S THE BEST

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

This was meant to be a general post not a specific reply but I'm not smart enough to figure out how to post.
I was speaking to the regenerative medicine researcher. I was told funding has been approved for a new stem-cell copd trial. This is a small, 15 person, trial. The underlying reason is to ensure donor lung, stem-cells are safe (donor as opposed our own). The point is, we could use our own without much risk of side effects but it isn't cost effective to remove ours and grow the millions needed from those relatively few. It is cost effective to use a pre-existing donor bank containing billions of lung stem-cells (they know how to grow them). If this test proves donor cells are safe, they can proceed to larger test populations, focusing on the efficacy of the therapy on copd. So far, the effects of lung stem-cells while they haven't resulted in side-effects, they haven't been very effective in reversing copd. I understand in the previous tests only 5-10% of subjects reported a significant improvement of symptoms.
Any comments, I'd love to hear them. I want this to work, so badly.

REPLY
Please sign in or register to post a reply.