COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
Hello everyone I read last night with great interest about the lung volume coils and so right away I fired off an e-mail to the doc . Well today I got a response saying I sounded like a good candidate and I'm so excited along with my fiance. I havent been here long enough for most of you to know anything about me...so if you dont mind being bored for a few hours...naa minutes...here goes. I live in delaware and a disabled veteran from 2 tours in Vietnam and it was there where I started smoking, cigs were givin to us free in our c-rations anyway over the years I was a heavy smoker and delveloped this disease... it seems to be getting much worse for me as now i cant walk to my car without gasping for air so they gave me a wheel chair i'm on spriva, symbicort, combivent rescue and I nebulize 3 times a day my ox is 24/7 on 3 or 4liters.....anyway I just wanted to let you know alittle about me and I want to thank the group for that vauble info on the coils ..anything to help me keep fighting ..anyway i'll be going to sc or md or baltimore for an evaluation...oh one more thing I know some of my spellings wrong but if its close i let it go
thank you all for the hugs to and just being on here to support one another
thank you all for the hugs to and just being on here to support one another
No spelling police here, so just join in with the rest of us spelling bee drop outs :)
Hugs....
I think our friend Captt is going for that too. God speed to you both and hope ll goes well.
did i miss something?
lung volumn coils?
is that like lung reduction surgery"
keep us updated
prayers are with you
This is a "Study" that has been done in UK I think, and now is being done in US. (Not Texas tho)
Somewhere Captt has a post about it not many days ago. He is also going to try it.
It is non-invasive they say, but I can not figure out how they put all those coils in you without being invasive?? Someone here can come up with the web site. I am not awake yet....More coffee please
http://abclocal.go.com/wls/story?id=9077725
Hugs,
Dennis
http://academicdepartments.musc.edu/pr/pressrelease/2013/emphysema.htm
I believe Captt is looking into the South Carolina research study.
Gary
here's a good website to let you know what the valves are all about:
http://emphysematrial.com
I have been confirmed for a PFT and my first meeting with my Doctor at Beth Israel in Boston on Jan. 28th. My second appointment will be for a CT scan of my lungs and the 6 minute walk.
The clinical trial is using the base numbers off the PFT to determine if you're qualified for the coil or valve procdedure. I have been assigned my own personal counselor and she is very thorough, professional and nice. She will be with me at every appointment, medical tests and be my personal guide through this medical adventure I am about to disembark on.
Leap...and the net will appear.
God bless you everyone...stand by one.
Brenda
Thank you all for offering information on this new technique----it may prove helpful to many of us.
www. sctr.musc.edu
They also need volunteers for other clinical research areas. As I previously stated, the Clinic has 32 satellite offices in the U.S. So people like Brenda in Houston, TX and other folks living throughout the the USA can probably drive to one of their offices not too far away from where you live. Check it out.
You need to register on their website. As previously stated. They have 32 SATELLITE CLINIC OFFICES IN AMERICA that you can select from rather than going to Charleston, SC. I live in NH, which is a long drive to SC. Dr. Strange offered 3 locations that were geographically close to my physical address. Two in Massachusetts and one in Connecticut. I picked the one closest to me and he gave me the contact information. I've been in communications with the Boston clinic office since that last conversation with Dr Strange.
So you might not have to drive all the way to Charleston and there might be a clinic office in Dover or another city close to you. Good luck and God speed...
Wishing you both the best on this study. but I am at a loss so far.
The nearest one to me, listed on the web site is in Houston, which is a good 5 hour drive one way, then killer traffic to Houston, then finding the place.
When I tried to check the clinic on the website it asked could I make continous visits to the place as required...and I had to say no because I can not even get there to Houston.
I will have to do some work on this one. Also, does it matter that it is in the VA medical center? I am not a vet, so it may make a difference.
I will be asking Dr. Sanchez what he thinks also...
Hugs
Brenda