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 .

@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?

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

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@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.

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Your story is truly insprirational

Liked by joelars

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@girlbybay

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

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

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@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.

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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.

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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.

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@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..

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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.

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@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.

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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?

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@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.

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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.

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@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?

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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.

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

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joangma I hope you read the replies I posted today 04/05/19. I pray your biopsy is negative. Please keep us posted

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@bb729

Thank you for the recommendation and insight. Have a breathe easy day.

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bb729 check out the Zephyr Endobronchial Valve for Emphysema. It at least shows some promise. Myself I wish we could all go to a US clinic and have all the options of stem cell therapy available to us and covered by insurance. I would rather die trying to improve my breathing than just accept my fate. When I am finally able to go for stem cell therapy I will update you all on my progress or lack of progress no matter which way it goes I am willing to try and I have so much faith that this is the right treatment for me. I have faith that God has led me to do this and will help me find a way.

Liked by alamogal635

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@justapril

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.

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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?

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I agree Big Pharma does not want us to find a cure. There is no money to be made in saving lives. They just want to continue pushing drugs. Not help to find a cure. Of course this is just my opinion.

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@justapril

I agree Big Pharma does not want us to find a cure. There is no money to be made in saving lives. They just want to continue pushing drugs. Not help to find a cure. Of course this is just my opinion.

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Have a tendency to agree with you. Iw Ould like to think the other way, but often wonder if opinions like yours are true. my mind stays open.

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