Questions - copd patient

[Raye9]

Hello, Great site! I am interested in learning about stem cell therapy for copd. First exacerbation six weeks ago - mild case of pneumonia. I don't know what stage; diagnosed 15 months ago.

Another spirometry one week after hospitalization. It improved slightly; up four points to 46, whatever that means. Have a pulmonology appointment soon. Frightened about progression.
Use a nebulizer as needed (sob now happens when I over exert myself off oxygen, haven't had much coughing, congestion, mucus, lately) and on Symbicort. Tried Advair, Spiriva; didn't tolerate either very well. Landed in the ER because of palpitations.

Symbicort increases pulse, blood pressure; worry I can't take any medications for copd without damaging my heart.
What type of stem cell therapy works best for copd, what clinics are the best, how effective, how many treatments and is it safe? I've been told aggressive exercise is a proven way to hold status quo; do plan on getting into pulmonary rehab., but I want to know about all possibilities.
Thank you.

 

[barbara]

Welcome to the forum. You also might want to check out www.copdliving.com
Unfortunately, stem cell therapy is in its infancy so I don't think there is an answer to what kind of therapy works best for COPD. We are all human guinea pigs at this point. Many people with COPD have heart problems as well. Some medications are easier on the heart. You might also ask if Daxas would be something your doctor would let you try. It is available by prescription from pharmacies in Canada having been approved in Europe.
I think you might do well to read as many of the posts that you can in the Pulmonary forum and the Ask the Doctor forum to get an idea of what is happening with stem cell therapy for COPD. It has stopped the progression of the disease for me. Many people get good improvements, others don't seem to get anything from treatment and that is one of the frustrations facing all of us.

 

[Raye9]

Thank you for replying Barbara. Looking around here and then the web, I see you are indeed a pioneer. Reading that it has stopped the progression for you gives me hope; realizing of course that doesn't mean I would have the same outcome if I do decide to try stem cell therapy. Heart disease has been ruled out but as stated, I worry continued use of steriods, inhalers, etc. will eventually cause a problem. Taking your advice and reading on.

 

[Connie]

What Barbara said plus you have heard right about the exercise. Staying active is the single best thing you can do. Don't waste any time getting into a GOOD rehab and when you finish their program sign up for some kind of maintenance program. Don't stop running or this disease will take you over. You may not be able to out run it but if you stop it will surely keep you down. A good diet and good positive attitude also help.

 

[Raye9]

Connie,
If I can just keep a hairsbreadth/breath ahead of it, I'll consider that an accomplishment..for now.. I need to work on the dietary part and sometimes the attitude part too. Easy to become overly anxious or depressed about the big picture if I dwell on the negative constantly. At the moment, I am thankful to be breathing okay without o2 much of the time. Not perfectly, but sat stays in the 90's, only drop to iffy territory when I over exert. My spirometry numbers look to me to indicate severe copd, but I don't know enough about lung function testing to be sure. (first pulmo. appt. coming up on the 21st of this month) If I am in the severe copd stage, it is bearable, live-able; I can exercise, enjoy my days and nights. Hopefully, either with conventional or stem cell therapy or a combination of both, I can maintain this level for a long time.
Thank you for the encouragement.