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?

Interested in more discussions like this? Go to the Lung Health group.

@newota10

Am I a candidate For Zephyr when my COPD is causing Pulmonary
Hypertension, Severe exercise intolerance, arrhythmia, and Heart Failure/remodeling?

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@newota10 – I'd also like to welcome you to Mayo Clinic Connect. Zephyr Valves have helped a lot of people who have shortness of breath and other complications from COPD including Pulmonary Hypertension. (https://www.ccjm.org/content/87/5/278). It is a procedure and not surgery like the lung volume reduction surgery which is used to improve breathing in some people with severe emphysema, a type of chronic obstructive pulmonary disease (COPD). During surgery, small wedges of damaged lung tissue are removed to allow the remaining tissue to function better. After surgery, people often have less shortness of breath, have a better quality of life, and are better able to exercise.
https://www.mayoclinic.org/tests-procedures/lung-volume-reduction-surgery/about/pac-20385045
Zephyr Valve procedure is when small valves are placed and used to close off damaged parts of your lungs. This is used for extreme cases of COPD which includes emphysema and dyspnea among a few. It sounds as if this procedure would be a definite conversation to have with your pulmonologist, as suggested by Amanda.

Some people can not have this done because of infections or allergies to the valves.

Are you finding that your breathing has gotten worse or that your inhalers and other medicines aren't working as well?

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@merpreb

@newota10 – I'd also like to welcome you to Mayo Clinic Connect. Zephyr Valves have helped a lot of people who have shortness of breath and other complications from COPD including Pulmonary Hypertension. (https://www.ccjm.org/content/87/5/278). It is a procedure and not surgery like the lung volume reduction surgery which is used to improve breathing in some people with severe emphysema, a type of chronic obstructive pulmonary disease (COPD). During surgery, small wedges of damaged lung tissue are removed to allow the remaining tissue to function better. After surgery, people often have less shortness of breath, have a better quality of life, and are better able to exercise.
https://www.mayoclinic.org/tests-procedures/lung-volume-reduction-surgery/about/pac-20385045
Zephyr Valve procedure is when small valves are placed and used to close off damaged parts of your lungs. This is used for extreme cases of COPD which includes emphysema and dyspnea among a few. It sounds as if this procedure would be a definite conversation to have with your pulmonologist, as suggested by Amanda.

Some people can not have this done because of infections or allergies to the valves.

Are you finding that your breathing has gotten worse or that your inhalers and other medicines aren't working as well?

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Yes my SOB is worse. So is my exercise intolerance. I am exploring Alternatives to medications. Not on any PAH medications yet. Who are Scottsdale pulmonologists to consult?

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@newota10 – It's pretty scary when your breathing isn't sufficient. Why are you exploring alternative medications when you haven't finished exploring what is true and tried within acceptable medical practices?

I think that Scottsdale pulmonologists are at Mayo Clinic in AZ.

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Medical devices can be better than meds. I’m also a healthcare provider. I need to look at all angles.

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@newota10 I would suggest medication-exercise-life style approach before the valves. I had a couple valves for lung issue. I would recommend using them as a last resort.

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I do appreciate your comments. Could you please share the difficulties and problems or any other comments you might have on the Zepher procedure? Thanks so much, Rose

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@fracturedd

@newota10 I would suggest medication-exercise-life style approach before the valves. I had a couple valves for lung issue. I would recommend using them as a last resort.

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@fracturedd– Would you mind going into more detail about why you recommend the valves as last resort? Are you having problems? Have they helped at all?

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Oh, I’m sorry I just saw this. Of course this is just my personal opinion- my valves were placed to help a pneumothorax to heal- then they were removed. (ILD from juvenile scleroderma) I experienced so much pain/inflammation “true inflammatory response” after the valves were placed. My pulmonologist and Rheumatologist really couldn’t figure out why my body reacted the way it did. The valves did their job- my lung did heal and the pain resolved after a error and trial of many different medications/therapies. So in the end all worked out. Also my use for the valves was different then most. I would just try other options first.

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@fracturedd

Oh, I’m sorry I just saw this. Of course this is just my personal opinion- my valves were placed to help a pneumothorax to heal- then they were removed. (ILD from juvenile scleroderma) I experienced so much pain/inflammation “true inflammatory response” after the valves were placed. My pulmonologist and Rheumatologist really couldn’t figure out why my body reacted the way it did. The valves did their job- my lung did heal and the pain resolved after a error and trial of many different medications/therapies. So in the end all worked out. Also my use for the valves was different then most. I would just try other options first.

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I'm Stage 3 Copd, FEV1 37%. Wud I be a candidate for Zephyr at Jacksonville? Also, how many procedures have been done?

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@bridey

I'm Stage 3 Copd, FEV1 37%. Wud I be a candidate for Zephyr at Jacksonville? Also, how many procedures have been done?

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@bridey Welcome to Mayo Clinic Connect, a place to give and get support. You are in stage 3 COPD and you are wondering if you'd be a candidate for Zephyr at Mayo Clinic in Jacksonville.

Below I have linked the Mayo Clinic Jacksonville website.
https://www.mayoclinic.org/patient-visitor-guide/florida
https://www.mayoclinic.org/appointments

You may want to follow the prompts on the site so you can have your particular questions answered.

If you haven't already done so you may want to scroll through the past posts in this discussion to find information and to connect with members like @fracturedd @carolannz that have discussed this topic in the past.

May I ask what kinds of treatment you have tried so far?

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I'm on oxygen in PM, 3 diff nebuluzer

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3 different nebulizer treatments, can walk 10 mins on treadmill, 20 min/2x/day using the Vest Airway Clearance System. Had spinal fusion surgery 15 months ago & doing well with spine. I start Pulmonary rehab in 2 weeks. 72 years old and history of asthma, upper respiratory issues, had tonsils out once, adenoids out twice. My Mom died of COPD 14 years ago. TY

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