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Anyone had Zephyr Valve Procedure at Mayo Clinic?

Posted by djallan @djallan, Jul 20, 2019

Is anyone willing to share their experience with Zephyr Valves at either Jacksonville or Scottsdale. I am stage 4 COPD and am very interested in this new procedure. Which Mayo has more experience? How many have they done at each location? What has been the improvement to quality of life? Is it worth doing?

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mirandas | @mirandas | Apr 29 2:38pm
In reply to @kndaustin71 "too bad I had not joined this group earlier. Valves were only approved in 2018. Just..." + (show)
Profile picture for kdalda75 @kndaustin71

too bad I had not joined this group earlier. Valves were only approved in 2018. Just had valves placed in November 2023 and could not be more pleased. Mine were done at Duke University. Duke got in on the ground floor of valve research so that they have been working with them for well over 5 years and have extremely experienced Interventional pulmonologist. so very glad I did it. Has made a world of difference with my stage IV copd

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hOW ARE YOU DOIN WITH THE VALVES i MEET WITH A VALVE DOCTOT TOMMORROW

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mirandas | @mirandas | Apr 29 2:48pm
In reply to @fracturedd "I had a couple placed in my left lung to help heal a pneumonthorax. It plugged..." + (show)
Profile picture for fracturedd @fracturedd

I had a couple placed in my left lung to help heal a pneumonthorax. It plugged my lung up! The valves were removed 3 weeks later once I healed. The procedure was fine, however,, I did have lung inflammation and pain after the valves were placed. The hospital I was at said they only have used the valves on 10 people in the us. This was 4 years ago. I have no pain today.

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@fracturedd

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sharynlynn | @sharynlynn | Jun 9 10:04am

FYI, I was considering this, but I developed multiple pulmonary embolisms in both lungs due to a cancer drug I was on. Have put procedure off. In the meantime, FYI, there is a great group on Facebook about Zephyr valves.

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1 reply
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ambition3 | @ambition3 | Jul 19 8:07pm
In reply to @bmore65 "I had it done in Dallas. Unfortunately I got a lot worse and my doctor couldn’t..." + (show)
Profile picture for bmore65 @bmore65

I had it done in Dallas. Unfortunately I got a lot worse and my doctor couldn’t understand why. So they removed the valves anbou 6 weeks later and I improved, but never got back to base. I was called into his office a week later and was informed that my CT scans were switched with another patient so I had the wrong valves placed in the wrong position. Now I’m terrified to even try again because what happens if it gets even worse and I get even worse. I lost all confidence

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@bmori wouls sue somebody for there neglet
e65

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ambition3 | @ambition3 | Jul 19 8:11pm
In reply to @sharynlynn "FYI, I was considering this, but I developed multiple pulmonary embolisms in both lungs due to..." + (show)
Profile picture for sharynlynn @sharynlynn

FYI, I was considering this, but I developed multiple pulmonary embolisms in both lungs due to a cancer drug I was on. Have put procedure off. In the meantime, FYI, there is a great group on Facebook about Zephyr valves.

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@sharynlynn like to find it

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