Qualifying for Zephyr valves for emphysema after lung cancer

Posted by 2cents @2cents, Jan 12, 2022

I was told that Zephyr valves are not denied automatically because a person had cancer. I'm curious as to whether they have been approved for anyone who's experienced a VATs resection for 1a NSCLC, and also has Emphysema. I'm fortunate to be cancer free for four years now, and at 5 years will stop follow-up with my thoracic surgeon. Shortness of breath makes it difficult for me to engage in a conversation with others without sounding like I've run a marathon.

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Welcome @2cents. I'm bringing a few members like @merpreb @bridey @newota10 into this discussion who may have some thoughts for you. Also here is a related discussion that may interest you.

– Zephyr Valve Procedure at Mayo Jacksonville and/or Scottsdale https://connect.mayoclinic.org/discussion/zephyr-valve-procedure-at-mayo-jacksonville-andor-scottsdale/

As for your specific question regarding eligibility for Zephyr valves after having had video-assisted thoracoscopic surgery (VATS) for lung cancer, I don't know. Have you discussed this with a surgeon or your pulmonologist?

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@colleenyoung

Welcome @2cents. I'm bringing a few members like @merpreb @bridey @newota10 into this discussion who may have some thoughts for you. Also here is a related discussion that may interest you.

– Zephyr Valve Procedure at Mayo Jacksonville and/or Scottsdale https://connect.mayoclinic.org/discussion/zephyr-valve-procedure-at-mayo-jacksonville-andor-scottsdale/

As for your specific question regarding eligibility for Zephyr valves after having had video-assisted thoracoscopic surgery (VATS) for lung cancer, I don't know. Have you discussed this with a surgeon or your pulmonologist?

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My doctor checked requirements at his teaching facility, and cancer didn't rule out eligibility. It requires some testing, and forms for approval. I spoke to somebody who manufactures the valves, and was told cancer does not disqualify an applicant. It would be disappointing to be denied after going through the required approval procedure. I don't think you ever know, but I thought others might have had some similar experience. Thanks so much.

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@2cents

My doctor checked requirements at his teaching facility, and cancer didn't rule out eligibility. It requires some testing, and forms for approval. I spoke to somebody who manufactures the valves, and was told cancer does not disqualify an applicant. It would be disappointing to be denied after going through the required approval procedure. I don't think you ever know, but I thought others might have had some similar experience. Thanks so much.

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I was very interested in the zephyr valve. I was given a triage appointment. I was very excited as you would expect with level 4 COPD end of life. My wife and I entertained the triage appointment. And this gave me a little bit of Hope that things could maybe be better. As I had done some research on this zephyr valve. I was later giving a response of not being a likely candidate for a zephyr valve. To be honest I was somewhat crushed. So I inquired as far as the reasoning why I was not eligible. To this date I have never received a reason why I was not eligible.
So I guess all the more reason to put my trust fa ith and Hope into a mighty God that we serve. Wishing you all the best

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@ronap

I was very interested in the zephyr valve. I was given a triage appointment. I was very excited as you would expect with level 4 COPD end of life. My wife and I entertained the triage appointment. And this gave me a little bit of Hope that things could maybe be better. As I had done some research on this zephyr valve. I was later giving a response of not being a likely candidate for a zephyr valve. To be honest I was somewhat crushed. So I inquired as far as the reasoning why I was not eligible. To this date I have never received a reason why I was not eligible.
So I guess all the more reason to put my trust fa ith and Hope into a mighty God that we serve. Wishing you all the best

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I'd actually gotten a list of requirements for the Zephyr from my Pulmonologist, but I never proceeded with the application. I'd need another PFT, and I remember the walk test needed to be at a specific number. I wish I'd saved the information. There were some co-conditions, maybe some heart problems, that could rule you out. I'd suggest you ask your doctor for a copy of the guidelines. You can go down the list and figure out what the denial revolved around.

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@ronap

I was very interested in the zephyr valve. I was given a triage appointment. I was very excited as you would expect with level 4 COPD end of life. My wife and I entertained the triage appointment. And this gave me a little bit of Hope that things could maybe be better. As I had done some research on this zephyr valve. I was later giving a response of not being a likely candidate for a zephyr valve. To be honest I was somewhat crushed. So I inquired as far as the reasoning why I was not eligible. To this date I have never received a reason why I was not eligible.
So I guess all the more reason to put my trust fa ith and Hope into a mighty God that we serve. Wishing you all the best

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Have you looked into COPD trials to see if there are any new medications that would suit you better? There are several COPD organizations that might lead you to more answers.
https://www.copdfoundation.org/COPD360social/Community/Get-Involved.aspx
Let's keep trying to find answers for you and not settle on one answer. If you google Zephyr procedures in the US there are many sites that might help you find what you are looking for. What do you think?

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@ronap

I was very interested in the zephyr valve. I was given a triage appointment. I was very excited as you would expect with level 4 COPD end of life. My wife and I entertained the triage appointment. And this gave me a little bit of Hope that things could maybe be better. As I had done some research on this zephyr valve. I was later giving a response of not being a likely candidate for a zephyr valve. To be honest I was somewhat crushed. So I inquired as far as the reasoning why I was not eligible. To this date I have never received a reason why I was not eligible.
So I guess all the more reason to put my trust fa ith and Hope into a mighty God that we serve. Wishing you all the best

Jump to this post

I went to my pulmonologist, but he wasn't very knowledgeable about the Zephyr valve procedure. He sent me to one that does perform the procedure. I went through the steps and was told I was a candidate. Then Covid hit, and I had to wait because hospitals were full. After the worst of it was over, I went back to the pulmonologist and had to go through all the steps and tests again. I did that, and when I went to schedule a date for the procedure I was told I was no longer a candidate. The reason I was given, was my CO2 level was too high. He did not tell me what it needed to be at but my pulmonologist put me on a home ventilator that I used when I slept. That was supposed to bring my CO2 levels down. I still haven't gotten the procedure but I'm not giving up. Maybe you can ask if that was why you were not a candidate.

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@nona43

I went to my pulmonologist, but he wasn't very knowledgeable about the Zephyr valve procedure. He sent me to one that does perform the procedure. I went through the steps and was told I was a candidate. Then Covid hit, and I had to wait because hospitals were full. After the worst of it was over, I went back to the pulmonologist and had to go through all the steps and tests again. I did that, and when I went to schedule a date for the procedure I was told I was no longer a candidate. The reason I was given, was my CO2 level was too high. He did not tell me what it needed to be at but my pulmonologist put me on a home ventilator that I used when I slept. That was supposed to bring my CO2 levels down. I still haven't gotten the procedure but I'm not giving up. Maybe you can ask if that was why you were not a candidate.

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Hi @nona43, I've seen a couple of different values associated with eligibility for Zephyr valve. Here are some criteria explanations that may help
Generally, those who should be evaluated for Zephyr Valve Treatment are patients who:
– Have a confirmed diagnosis of COPD or emphysema
– Have to stop to catch their breath often, even with taking their medication as directed
– Have reduced lung function (FEV1≤50% predicted)
https://www.uofmhealth.org/conditions-treatments/pulmonary/zephyr-valve-treatment-copd-emphysema

Is the home ventilator helping you?

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@colleenyoung

Hi @nona43, I've seen a couple of different values associated with eligibility for Zephyr valve. Here are some criteria explanations that may help
Generally, those who should be evaluated for Zephyr Valve Treatment are patients who:
– Have a confirmed diagnosis of COPD or emphysema
– Have to stop to catch their breath often, even with taking their medication as directed
– Have reduced lung function (FEV1≤50% predicted)
https://www.uofmhealth.org/conditions-treatments/pulmonary/zephyr-valve-treatment-copd-emphysema

Is the home ventilator helping you?

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Yes, the home ventilator is slowly bringing my CO2 level down. I know it has dropped because I had an ABT done. I've had 3 of these ABT's. Two of them ordered by the pulmonogolist that was going to perform the procedure. The last one I took it on myself, by going to the hospital and requesting it. My level had gone from 57 to 52. I am about 70 miles from the doctor, so I have a hard time communicating as I would like. There are none in my area to perform the procedure. This is the reason I need to know the requirement level. All the other things that were listed in the video, I've had done, twice.

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@nona43

I went to my pulmonologist, but he wasn't very knowledgeable about the Zephyr valve procedure. He sent me to one that does perform the procedure. I went through the steps and was told I was a candidate. Then Covid hit, and I had to wait because hospitals were full. After the worst of it was over, I went back to the pulmonologist and had to go through all the steps and tests again. I did that, and when I went to schedule a date for the procedure I was told I was no longer a candidate. The reason I was given, was my CO2 level was too high. He did not tell me what it needed to be at but my pulmonologist put me on a home ventilator that I used when I slept. That was supposed to bring my CO2 levels down. I still haven't gotten the procedure but I'm not giving up. Maybe you can ask if that was why you were not a candidate.

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Nona 43 I'm sorry to hear that you also have COPD. I was very hopeful about this zephyr valve I really wanted to find out why I was not eligible. I have not had a response from the doctor's office. I have asked several times to know avail. Well you know how it is you either is or you ain't. I do hope they get the program going and that is successful. It's always so nice to hear of any research that's being done in the arena of COPD emphysema best wishes

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