Severe COPD and Interstitial Lung Disease

IPF is Idiopathic Pulmonary Fibrosis. Idiopathic meaning unknown cause. IPF is a progressive lung disease. It causes permanent and irreversible scarring that makes it difficult to breathe. This is why you were asked about a lung transplant. There are a couple of meds on the market that will slow down the progression of IPF. We are awaiting our meds for my husband. One cannot obtain this from your local pharmacy; only through the manufacturer of the drug. There are side effects from these drugs; we, weighed the lesser one to try. I do hope you will be able to get some relief soon. What I see with my spouse is, he tires easily, has had bouts of coughing (We have this pretty much under control). He tires from walking a short distance. He has been steadily losing weight. With the meds (when they arrive), I understand they will likely cause a weight loss. We were given a lot of material to read about this disease. I hope you have been given the material as well. Google is a good place to look also if you do not get the information from Connect at Mayo. Good luck and I hope you will be getting the meds.

Hi, I'm Kay and I have IPF. Sad to see Mayo Clinic doesn't address this disease as an issue as those of us that have it know how severely is affects our "past normal life"! It is such an insidious disease with no satisfactory tx. I was on a clinical trials study for 2 years called Fibrogen 3019 in phase 2 and it worked!! Kept me steady with no drops in Stats and actually some improvement BUT because they were looking at going onto phase 3 they stopped us and would not let us continue on the drug. So many research restrictions and greed in the field. I am working on getting on Ofev for the IPF. I, too, have emphysema but the IPF seems to counteract that so really have no symptoms from that at this time. Have you looked at any of the clinical trials studies.? Several working on with their phase 3 trials. I am looking at PRM-151 which would allow me to be on Ofev during trials. Hopefully you have a specialist in interstitial lung disease as well. Can you get into respiratory rehab which would be inside? I go 2x a week and looking at getting a treadmill as told 20 Minutes 2-3 times per day every day is of great value. I was diagnosed in 2015 but my pulmo doc says probably had it for 10-15 years!! So, keep looking at new stuff coming up. Go to Inspire.com for some support and question answering. Thanks, Kay

Have you had the pneumonia vaccine shots? I had the 2 required but kept getting pneumonia and was in the hospital for interstitial lung disease. They tested me for IgG proteins and did a pneumonia titer. It showed I had low IgG's and a very low pneumonia titer. I got another shot of the vaccine and it seems to be helping. Have they tested you for any of the above?

Stem cell therapy is available and you should look at it. Google "The Lung Institute" and "Stemgenics". They will be happy tro advise you.

NOT FDA APPROVED...DR at Mayo said stay away from it. Most Ins don't cover it and it is pricey.

@edgineer, I have to agree with @waterboy. It is really important to be well informed when researching the stem cell therapy (regenerative medicine). There is a lot of promise with stem cell therapy, but where there is hope there is also hype. Regenerative medicine for lung disease is still in the early stages. However some institutes will claim success.

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.

@edgineer, Hi. You are right. Those two companies are happy to advise you. They are happy to take $9-$12,000 dollars from you also. There is a reason insurance companies won't cover this for lung therapy. I am sure you were trying to be helpful and offer resources. I have discussed this with experts in this field at the Mayo clinic. Stem cell research is currently being done there and does hold promise, but it is not there yet. You cannot inject or infuse stem cells to repair lungs. That does not work that way. I have read many patient's testimony on this site stating it did not work for them, and were out of a lot of $$$. Stem cells for lung repair will most likely be in the form of grafting your own t-cells into donor lungs for transplant to minimize rejection. There is even talk of 3-D printed lung scaffold (forms) with your t-cells grown over it for man-made lungs for transplant coming in the future. I know it is nice to offer people hope, but some get bilked. If people decide to give a lung stem cell institute a try; do your homework. Many are not accredited medical facilities, nor have proven, published documentation to back up their claims. There are legitimate stem cell therapies for other health situations, but lungs are not one of them.

@waterboy Right-on!

Is there a group for COPD.?

Hi @tcont2000, and welcome to Connect.
You'll notice that I moved your message to this existing discussion about COPD called "Severe COPD and Interstitial Lung Disease" where you can meet members like @aldrichgirl @waterboy @blueheeler309 @windwalker and others.

COPD discussions can be found in the Lung Health group (https://connect.mayoclinic.org/group/lung-conditions/). I encourage you to follow the group.
Here are few other discussions, you may be interested in:
- COPD/ Emphysema https://connect.mayoclinic.org/discussion/copd-emphysema/
- copd end stage https://connect.mayoclinic.org/discussion/copd-end-stage/

TCont2000, are you living with COPD or caring for someone with COPD? We look forward to getting to know you.