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BLVR - Feedback Please .
A MyCOPDTeam Member asked a question 💭

Having had Bronschopy Lung Volume Reduction in the past year or so , I would love a bit of feedback from some others who have been down this track . Having Private Insurance ( Not Cheap ) I had it last year . Possibly expecting too much & not really feeling much better physically or mentally , in fact the word is " Disappointed " . I know I should never have smoked But my doctor had an ashtray on his desk in the late 50's , anyway folks if you have had it I would love to hear from you.

posted November 10, 2016
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A MyCOPDTeam Member

Hi Folks , I am still around , have been a bit slack in posting re BLVR , it is now11 months since I had the valves re inserted after the pneumothorax , I had a Spirometery Test earlier this week & see my Specialist tomorrow , so I shall get a professional synopsis on the result before commenting , I really want to give my opinion , but as Peter had alluded to - one must be careful ,
I attend rehab each week , and apart from exercising & getting great advice from the Physio , comparing how you are with similar people is what makes it --- At the end of the day good people , at the age of 15 I reckoned smoking was cool , he'll my doctor had an ashtray back then , & let's face it we enjoyed it back then not knowing the future !
Anyway good people , I believe my fev1 has actually improved on paper / more to follow after Professional Interpretation!!!!

posted December 14, 2016
A MyCOPDTeam Member

Hi Peter the Stemcell I had done was done in Queensland and it is getting checked out as I wasn't happy about the way they did things and let's face it they take advantage of vulnerable people who will try anything to get their health back..

posted December 12, 2016
A MyCOPDTeam Member

Hi john,it's been a long time since I've been on site.how have you been,we have been traveling around the last 9 months in the outback came back to Melbourne 4weeks ago as my sisters husband passed so came back to give her support now we are staying for Xmas .as you know I had All my valves removed so everything I had done plus the pain and lung collapses was all for nothing,but I had to try then I had Stemcell with was a waste of money so I'm not giving up so my specialist said that I am a candidate for a lung transplant had my first visit last week at the Alfred hospital and now I've got the next appointment in March where you spend 3days in Hospital and have a lot of test done to see if you might be suitable.every time I come back to Melbourne I end up in hospital had a chest infection bit I'm right now how are the valves have you still got them in and how are you feeling I would love to hear how you you are getting on seeing that we have been through the same operation.hope to hear from you soon John

posted December 11, 2016
A MyCOPDTeam Member

Information Jan 2016....Re-- Nitanol Coils

http://jamanetwork.com/journals/jama/fullarticl...

posted November 12, 2016
A MyCOPDTeam Member

Thank for the clarification, John, both for where you had the procedure done and which procedure it was. That helps me sort it all out. This type of non-invasive procedure has been tested in the US since 2003 and there have been a dozen variations on valves and vents initially and later, glue and steam were added to the mix. As I said, the FDA has not approved any of the ones that have been put forward for approval because the results of clinical trials here did not show statistically significant improvement in patients over time. Many of the companies did get approval in Europe and in Australia as well as other places.

The procedure that does look like it might have good enough results in clinical trials here to get approved is one using coils, which open the airways rather like a balloon stent, allowing the trapped CO2 an exit route, rather than closing off areas of the lungs. The advantage of this approach is that people with diffuse damage (who wouldn't be eligible for LVRS or any BLVR procedure) can have it done, so there were many people who had the procedure done in clinical trials and so far the results have been much better than any of the BLVR results.

posted November 12, 2016

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