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...
Hi everyone,
It's been quite awhile since I've posted about my LVRC clinical trial with Dr. Adnan Majid and his wonderful staff at Beth Israel Deaconess Medical Center in Boston, MA. As of June 11, 2015, I have completed all phases of the Lung Volume Reduction Coil clinical trial. Please log on to the website:
http://academicdepartments.musc.edu/research/
This will bring you to the research page and click on the Clinical Trial icon.
It all began when I logged on to this website from a post by one of our DS members from Texas and suggested we try to get into one of these trials. I was classified at Stage 4 COPD with a FEV of 22% in January 2011. I was forced to retire from a career I truly loved since I would be a liability and had to have good ol' Uncle Sam start taking care of me. I was accepted by this research institution December 2013 and was offered, based upon my location in New England, 3 area hospitals to choose from where this trial was being conducted. They have 34 clinical trial locations throughout the United States. Of course you have to submit the usual load of medical reports, enroll in pulmonary rehab for 6 weeks, etc, etc, etc. On November 4, 2014, I underwent my first coil procedure. receiving 10 coils in my upper right lobe. I was scheduled to receive my next LVRC on February 9, 2015. But due to the flu and a couple of other setbacks during the winter of 2015, I finally arrived at a final phase date of June 11th having 13 coils implanted throughout my entire left lung. I was released the next day in less than 24 hrs and I have a one month follow up in Boston and then they cut me loose and I come back for an occasional update and examinations.
I've felt much better breathing after my first lung was done in November and now having both lungs completed, I am so ready for the new quality of life this LVRC has brought to me.
I'll be happy to answer any questions you may have.
Never give up and God bless you all...
It's been quite awhile since I've posted about my LVRC clinical trial with Dr. Adnan Majid and his wonderful staff at Beth Israel Deaconess Medical Center in Boston, MA. As of June 11, 2015, I have completed all phases of the Lung Volume Reduction Coil clinical trial. Please log on to the website:
http://academicdepartments.musc.edu/research/
This will bring you to the research page and click on the Clinical Trial icon.
It all began when I logged on to this website from a post by one of our DS members from Texas and suggested we try to get into one of these trials. I was classified at Stage 4 COPD with a FEV of 22% in January 2011. I was forced to retire from a career I truly loved since I would be a liability and had to have good ol' Uncle Sam start taking care of me. I was accepted by this research institution December 2013 and was offered, based upon my location in New England, 3 area hospitals to choose from where this trial was being conducted. They have 34 clinical trial locations throughout the United States. Of course you have to submit the usual load of medical reports, enroll in pulmonary rehab for 6 weeks, etc, etc, etc. On November 4, 2014, I underwent my first coil procedure. receiving 10 coils in my upper right lobe. I was scheduled to receive my next LVRC on February 9, 2015. But due to the flu and a couple of other setbacks during the winter of 2015, I finally arrived at a final phase date of June 11th having 13 coils implanted throughout my entire left lung. I was released the next day in less than 24 hrs and I have a one month follow up in Boston and then they cut me loose and I come back for an occasional update and examinations.
I've felt much better breathing after my first lung was done in November and now having both lungs completed, I am so ready for the new quality of life this LVRC has brought to me.
I'll be happy to answer any questions you may have.
Never give up and God bless you all...
Hugs,
J
Best wishes,
Susan
These coils have been used throughout Europe for several yrs now.
Thank you for being one of the people who will help make this procedure acceptable in the U.S.
Tell us more,are you still on O2. How often are you checked.
Thank you for any and all info that you wish to share w/us.
Again.................WOW !!
I spent a short stint there at Beth Israel several years back - most impressed with the staff.
From your experience, it sounds like this will bring hope to many.
I am also curious if you were able to get off of 02 (or if we need to wait longer for you to actually "see/feel" results.
Also if your FEV of 22% improved with each lung done.
Thank you for your volunteering for this study that sounds so hope to us.
this is very exciting!
my thoughts and prayers are with you.
(((HUGS)))
You'll never rid yourself of the O2 concentrator but the frequency to use it will diminish. I can walk from my car and do a full shopping trip to the local market and shops and keep my portable 02 tank in the car and when I'm finished with the shopping, come back to the car and put on the O2 hose to bring my %SpO2 to the high 90's again. I can take a shower without bringing my O2 hose into the bathroom. The weather in NH is great this time of year for COPD and that also helps with the improvement of breathing with the LVRC. I strongly believe I will get better and top out on the performance curve in a couple of months and hopefully maintain that level, God willing and the creeks don't rise! as I long as I possibly can. Exercise, good diet and a positive attitude is what I need to focus on, and yes, there's times I have my pity parties just like the rest of you, it's only natural and healthy for us.
This is for Bill ( FLHam49), Denny Greene and Promises to Keep. Your advice, thoughts and words of wisdom was inspiring and made me feel welcomed when I joined the DS Family a few years ago when I was lost at sea and felt I was going down in the middle of a crazy storm! Rest in peace my friends.
I expected to be in Boston and instead landed in South Carolina.
Help, I'm lost and can't find my way to New England.
I am so impressed with speedy results. No O2 in the tub/shower. Also, no O2 to go into a store to shop.
What more can I say besides" WOW"., again,and again.
Great news.....Peter
My doc said I was a candidate for lung reduction, but not yet,
So glad things have worked out for you,, god bless
Linda
Take care,
Linda in CA