COPD and Emphysema: Confused by pulmonary function test and more

Posted by redsox @redsox, May 29, 2018

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

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

@merpreb

@jgpolachek- Welcome to Mayo Connect. I am a volunteer mentor with Mayo Connect. I'm a lung cancer survivor with COPD and Emphysema. One of my doctors told me about certain doctors and pharmacies playing with trials. It's disheartening at best. And I agree, how does that give hope to anyone?
May I ask what brings you to Connect and how can we help?

Jump to this post

Hello, we have similar conditions, are there any stem cell trials in Jacksonville for individuals such as You and I? Thanks!!Girlbybay

REPLY
@joelars

I'm intrigued by your story. I was diagnosed with COPD at 50. I was a heavy smoker. I quit and went on a desperate "health kick' including weight training yoga and jogging. I was told I wouldn't be able to jog. Initially I struggled to do a .25 mile jog. Eventually (2-3 years later) I got to 10 miles at 12-13 minute pace. Now, at 65 I generally do 5k-10k jogs at 11-12 minute average (I start at 15 minute pace and end at 9)
Sorry for the history, but I'm curious about your distances and speeds and if you know many lung cancer or COPD people who became fit runners. I haven't met any personally.
I believe my strict exercising routine has substantially slowed the disease progression.

Jump to this post

Your story is truly insprirational

REPLY
@girlbybay

Hello, we have similar conditions, are there any stem cell trials in Jacksonville for individuals such as You and I? Thanks!!Girlbybay

Jump to this post

@girlbybay- Good morning. I've googled stem cell for COPD and this is what I could find. https://nsistemcell.com/stem-cell-therapy/copd/

REPLY
@jgpolachek

I was diagnosed at 65 could do well on treadmill, only had chronic bronchitis, now 75, have both bronchitis and emphysema, do 3.2 miles an hour. Sounds to me your lucky and only have bronchitis, to me, emphysema is far worse. You have the right idea how to treat COPD.

Jump to this post

I have both bronchitis and emphysema as well. I am on oxygen 24/7 and I hate using it so much. I honestly believe my only option will be stem cell therapy outside of the United States where it is legal to use Umbilical Cord Placenta stem cells as they offer the best possible help for COPD from what I have read. Sadly I am still working on raising money on Gofundme to help pay for the treatment. Best of luck to all of us dealing with COPD.

REPLY

I have a friend that suffers from pulmonary hypertension and also COPD and emphysema. I understand that many lung treatments concerning stem cell are covered by insurance. But, the FDA has not approved stem cell procedures for knees and hip problems. I have also been told that medical cannabis also helps many with lung conditions. Anyone have info on either comment? Thank you.

REPLY
@jgpolachek

I am far from a medical person but I would love to see Mayo Clinic that can multiply stem cells by the millions, multiply Alveolar Epithelial Progenitor cells and then put them in somebody with emphysema. These cells regrew alveoli in mice, if it would do that in humans, emphysema would be slowed or stopped..

Jump to this post

Mayo did just what you described-they grew millions of stem cells and "introduced" them into the lungs of COPD sufferers. (As I said) only 5-10% really benefited. They (Mayo researchers) have "no clue" as to why the results weren't better. Mayo is planning to re-run the trial as early as this summer. I have asked to be included. While the people who obtained significant improvement was small, no one has had adverse side-effects. I understand that is because we use our own stem cells "foreign" or donor cells are not used so rejection wouldn't be a side effect. However, I understand that the quality of the stem cells may be related to the extent inf lung injury, therefore severe lung damage may not be suitable for effective stem cell harvesting-but that is something I read in the literature. I have no medical training, and the Mayo researcher I spoke with did not offer that as a reason for the disappointing result.

REPLY
@jgpolachek

I was diagnosed at 65 could do well on treadmill, only had chronic bronchitis, now 75, have both bronchitis and emphysema, do 3.2 miles an hour. Sounds to me your lucky and only have bronchitis, to me, emphysema is far worse. You have the right idea how to treat COPD.

Jump to this post

maybe you are right about the bronchitis. I had pneumonia 3 years ago, i was hospitalized and underwent various ct-scans and mri's. The scans didn't disclose emphysema. I understand, at least in severe cases, the condition is visible with some lung scans. Still, I have congestion and trouble breathing. I wonder, can you have small airway disease without emphysema or is the former just another name for the later? And is it possible the small airway blockage is the (primary) result of bronchitis?

REPLY
@joelars

Mayo did just what you described-they grew millions of stem cells and "introduced" them into the lungs of COPD sufferers. (As I said) only 5-10% really benefited. They (Mayo researchers) have "no clue" as to why the results weren't better. Mayo is planning to re-run the trial as early as this summer. I have asked to be included. While the people who obtained significant improvement was small, no one has had adverse side-effects. I understand that is because we use our own stem cells "foreign" or donor cells are not used so rejection wouldn't be a side effect. However, I understand that the quality of the stem cells may be related to the extent inf lung injury, therefore severe lung damage may not be suitable for effective stem cell harvesting-but that is something I read in the literature. I have no medical training, and the Mayo researcher I spoke with did not offer that as a reason for the disappointing result.

Jump to this post

This is why I am interested in using stem cells from the Umbilical Cord preferably using the placenta after the healthy baby is born through cesarean section. I believe as we age our cells are not as effective as cells from a new born. This treatment can not be performed in the United States as I will not be using my 66 yr old cells. I am hoping to have great success with one treatment of 200 million stem cells. They recommend 300 million but I know I can not raise enough money for that. I may even have to go with 100 million stem cells if I am unable to raise the $6500 I was told it will cost for 200 million. I am very hopeful that this treatment will extend my life another 15 to 20 years maybe longer if it is God's will.

REPLY
@joelars

maybe you are right about the bronchitis. I had pneumonia 3 years ago, i was hospitalized and underwent various ct-scans and mri's. The scans didn't disclose emphysema. I understand, at least in severe cases, the condition is visible with some lung scans. Still, I have congestion and trouble breathing. I wonder, can you have small airway disease without emphysema or is the former just another name for the later? And is it possible the small airway blockage is the (primary) result of bronchitis?

Jump to this post

I have been doing a lot of reading on not just stem cells treatments but also other new treatments that could benefit sufferers of COPD. I read the Zephyr Endobronchial Valve was approved by the FDA 9 months ago for treatment in the United States. This is suppose to help people suffering with emphysema yet I have yet to hear any Pulmonologist mention it or anyone saying they have had this procedure and the results. Sadly I am often disappointed with the level of care provided by our doctors. Most are afraid to step on the toes of the FDA who make so many Billions of dollars every year denying life saving treatments and approving drugs that are over priced and don't offer any chance of cures.

REPLY

I hope you all go read my reply's to the above threads.

REPLY
Please sign in or register to post a reply.