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...

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ridingnow 04/03/2015

This is about the trial that we both are persuring his is the LRVC mine the EBV valve

If your RV is 175 or higher, you should have no problem getting into the final stages of the valve procedure. Good luck!

Me, I'm waiting for the winter to leave New Hampshire but it just keeps lingering. I finally have my confirmed coil procedure date on April 9th in Boston. I have a one month follow up in May and then they cut me loose. I'm feeling the best I've ever felt since coming here on Nov. 12, 2013. My breathing is doing great and can't wait to get the second coil procedure and really feel the difference. Then I'm going to go where the sun keeps shining through the pouring rain, going to go where the weather suits my clothes, banking off of a north east wind, sailing on a summer breeze and skipping over the ocean like a stone!

God speed...

I'm sorry this is so long but wanted to give everyone hope that something will break for us I start a different procedure the 12 the of this month and will put a link on here if not just type in the name and go to you tube
i HOPE THIS IS HELPFUL INFO FOR EVERYONE

Emphysema and endobronchial valve treatment - YouTube

jarca 04/03/2015

thank you for the update.
I am so happy the coils are working for captstt! That is an exciting break through for all that have COPD! (i am glad you didn't use just the letters or i would have thought it was a typo for LVRS, Lung Volume Reduction Surgery)

I hope your procedure with the valves goes as well. please keep us informed as you are able.

My prayers are with both you and captstt!

question=. are the valves & coils still in the 'test stage' or are they available for anyone with COPD?

jarca 04/04/2015

ps. for those that are interested, here is the youtube link for the Valves (Emphysema and endobronchial valve treatment; EBV);
https://www.youtube.com/watch?v=DnOl6nTRSl0

and here is the youtube for the coils (Lung Reduction Valve Coil LRVC); https://www.youtube.com/watch?v=9XQvTypuUaI

i hope the links works *crossing fingers*.
good luck! it looks amazing.

leonie69 04/04/2015

WOW, this really gives hope to a whole bunch of COPDers. Good luck with the rest of your treatment and maybe we'll meet up on some sunny beach on some distant coral island - nekkid of course!
Thanks too to Jarca for those links - I plan to take a look after lunch today when the old man is napping. Keep smiling :-)

bjrapp2020 04/04/2015

Thank you for the updates on both of you guys!! The results so far sound wonderful, and I believe they will just keep on getting better. Any improvement is better than it was....Hang in there guys, and blessings to you both,,,

ridingnow 04/04/2015

Hello jarco yes this is still in the trial stages both the coils and the valves but both are very promising and i'm looking forward to doing this and hopefully its helps us all. Ive looked at some of the cases and must say its amazing how it works so far. here are a few more cases you can look at with the valves. I'm not sure how to post you tube but you can type in these and get them i'm sure. and thank you all for all the well wishes.

? Taking Action for your health: emphysema cure - YouTube

Successful treatment of ventilator dependent emphysema with Chartis treatment

ridingnow 04/04/2015

One more thing everyone if your interested in trying to get in the trial here is a list in the U.S.A that are doing these.

Evaluation of the IBV Valve for Emphysema to Improve Lung Function - Full Te

jarca 04/05/2015

i don't think i found the right one on youtube this time.
i found VERY graphic images of actual broncoscopy(?) of putting the valve in each place. amazing to watch, but i'm not sure others would find it as fascinating as i did LOL
it was one of those things that they would put a "graphic/kids" warning on tv for :)

the 1st site did say that these are in their "final" testing faze.

Thank you & capstt for being "test subjects" ---this does look promising!
somehow, for me, the valves seem more "logical" than the coils---must be the mechanic in me that understands a valve.

How much of your lung must be "good" for them to be able to do this proceedure?

ridingnow 04/05/2015

lol No Jarca it doesnt sound like the one i mentioned or gave you the you tube info on it will be a women walking her dog of course first they have to have an ad the second is just a finding after treatment. Now you asked how much of your lungs must be good for the procedure and the best answer I can give you is its not based on how much but where it is and all i know is you have to be heterogeneous for the valve thats why they do the ct-scan, the other is homogeneus. thats all I know about it , my advice to you is to see where their doing it in your area and see if you can qualify. good luck and i'll keep you all posted on all i go through ..woo hoo one more week till i start. wish me luck

jarca 04/06/2015

My prayers are with you & i hope you have as good of results with the valves as capstt seems to be having with the coils.
I have soooo many questions & am so curious of before & after effects; it would be wonderful if you keep us updated, i appreciate that.
i am so curious if you are able to get off supplemental 02 , if you still need inhalers & all of the medicine afterwards etc etc.
With COPD it seems our only options are Lung Reduction surgery or transplant; these new options sound so much less invasive.
I have high respect for all that chose to be "guinea pigs" in research that may some day help others.
bless you & my prayers are with you

ps. how long will you be hospitalized?

great2bme 04/06/2015

Ditto what Jarca just said. You two guys are my heros!! God bless you and be with you both. You will be in my prayers. Tell Capt that when he sails away hope he will sail south along the Atlantic shoreline and when he reaches Florida give me a heads up and I'll be on the shoreline somewhere between St. Augustine and Daytona to wave him onward!! :) Or maybe it'll be a thumbs up hoping to catch a ride to wherever the sun keeps shinning through the pouring rain!!
Big hugs and may God bless and keep you both well and safe. And please keep us updated.
J

bjrapp2020 04/06/2015

Being the "Old Lady" in the bunch, I am wondering if there is an age/weight limit? I was to high risk for transplant, even tho I passed every test. But could have been on list for 2-3 years or more, and once past cut off age they will not do it, or if you have a rejection, they will not re transplant, like they do with younger people (60 and younger).I was close to 69 and cut off age was 70. I keep saying if I had been younger I would have jumped at the chance, but then I remember lung transplants are not that old, started in the 90's or late 80's I believe.So that option may not have worked for me either.
Thanks to both of you "Pioneer's" , God bless you and keep you safe and getting better all the time with the breathing.

Hugs BJ

BJ

ridingnow 04/06/2015

Ha I'm sorry greattobme but Freddy (captstt ) aint going without me , he better wait lol

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