Posted by Chris M. on 6/16/2008, 9:18 pm, in reply to "Re: Unproven stem cell therapies"
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SoupA and B ...wow. Understandable, tho.
Agreed, there are not any current viable stem cell treatments in the field of lungs, yet. Yet, there is hope for the future.
Thirty years ago, we grew tissue from skin for growing virus under laboratory conditions, easily. There are burn hospital Doctors doing amazing repairs of humans with improved methods,and there are Docs working to add cells to bone marrow to neutralise the rejection of organ transplants in patients. There are Cardiologists adding stem cells to heart tissue with some hope in very sick patients. In short there IS HOPE for our future.
Do you see a Pulmonologist regularily? Those Docs who are specialists in lungs. We should continue to appear, and show them we are surviving and indeed thriving with practical Rehab and good meds. Which means Doc's, your patient list is growing, and what's going on in the field of research Doctor? I'll be here Doc when you guys find something helpful. Don't forget me, Doctor when it comes time to act on some good news.
Starion is an shining start of example how to get things going in a State that has no Rehab, little encouragement, little testing, and she has sparked a program to encourage research. More patients out of their closets getting care and speaking up. It is important that we rattle our rattles and let the world know we need more research. Get with the Rehab program and Better Breathers programs and get counted. Take the address of our forum and post it on Rehab notice boards. Agitate your local papers to write stories on COPD...Send them clippings. When they are voting on a bill before Congress dealing with our issues (not supporting companies) write sensible notes of encouragement to increase funding or change how things work. Have children? They will need these research programs if we don't get things going now.
I get discouraged when the American Lung Association whines on about anti smoking programs and would much rather they get behind improving Rehabs and research for those of us with lungs. You know, lung association and lungs, kinda speaks to me...
When I was diagnosed about 9 years ago with a handy FEV1 19% the local library encyclopedia described my situation as 95% mortality within a year. 5% survival????
Medicare had a moritorium on LVRS and it took a Sister in New Mexico to get a referral to Rehab in an adjoining city near me. I and my husband drove 105mi @ way to get me there.
Here I am years and years later still doing better than I was then! And believe me I have HOPE that when the Ice dam breaks they will figure this out and no one will need to trek to the Artic circle or China to find treatments.
There are many folks out there who have heard us bellowing about LVRS and exercise, so you'll hear when there is solid news.
Let your Pulmonologist know you want to hear when anything gets going!
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