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 Pneumonx Zephyr Valves
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Diane-D
Rookie

6 Posts

Posted - Feb 03 2019 :  9:01:56 PM  Show Profile  Reply with Quote
Approval for Pneumonx Zephyr Valves was given by the FDA on June 29, 2018. I was very lucky to meet the qualifications to be a recipient of the valves. The procedure was done on my left lung on November 26, 2018 in Phoenix, AZ by Dr. Richard Sue who is very experienced with doing this procedure and is also a gem of a person. I was #10 in the US to be a recipient of these valves -- four valves were placed in my left lung. I still have to go through pulmonary rehab and should be doing it shortly. I learned Friday exactly what my improvement is and my doctor is thrilled with my outcome. I had to spend four days in the hospital -- no easy deal, but being able to breathe easier and better definitely makes my quality of life much better and worthwhile. If anyone has any questions, I'll be sure to answer them if I can. Check out Pneumonx (the name of the Company) on the internet and see where the nearest location is to where you live if this interests you. Pulmonx will be able to direct you to the person who can tell you what information they will need to qualify you. Good luck to any of you who are interested!

Edited by - Diane-D on Feb 04 2019 05:31:14 AM

jmrommes
Contributing Member

1947 Posts

Posted - Feb 04 2019 :  08:56:58 AM  Show Profile  Reply with Quote
Glad you had a good experience! I'm a little confused as to why it has taken so long for you to begin PR again. Did you have complications, was it protocol to wait nearly three months, or was it something else? My understanding from two friends who also perform this procedure was that they encouraged people to get back to their exercise routine as soon as possible.

Exercise not only lets me live, it enables me to have a life.
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Diane-D
Rookie

6 Posts

Posted - Feb 04 2019 :  10:43:37 AM  Show Profile  Reply with Quote
There are several reasons it has taken so long to start pulmonary rehab where I live. Mainly, the health care system where I live is not working well these days and not just for pulmonary rehab. There are loads of people moving here in addition to the onset of our winter snowbirds. The healthcare system is not prepared for the large number of people here now. Protocol for this procedure is to have pulmonary rehab after 45 days. I have been doing some exercises at home until I get into a more structured program which I look forward to starting soon. I also take myself out a few days a week and walk for at least an hour inside of large stores.
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hapolati
Member

USA
37 Posts

Posted - Feb 04 2019 :  11:39:29 AM  Show Profile  Reply with Quote
Thanks for posting about your experience. Would like to hear much more. You won't be boring us if you go into details!

terry farley
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jmrommes
Contributing Member

1947 Posts

Posted - Feb 04 2019 :  1:53:53 PM  Show Profile  Reply with Quote
If you've not done PR before, then it's certainly reasonable to wait. If you have done it before, you might consider taking what you already know and joining a gym so you can exercise with the rest of the world. If your PR program does a good job, you will do that in a couple of months anyway.

Exercise not only lets me live, it enables me to have a life.
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Diane-D
Rookie

6 Posts

Posted - Feb 04 2019 :  7:44:30 PM  Show Profile  Reply with Quote
hapolati, I don't know if I know you or vice versa from a previous life (on COPD International), but I don't think I will bore you with details because when it comes to this procedure, I am not real knowledgeable about the details. I acknowledge that each of us are individuals and our life experiences are totally individual, too. We each bring a different set of circumstances (health-wise and otherwise) to the table at this stage in our lives, and for this procedure each person is treated on a very individual basis. Why I received four valves I do not know and I didn't inquire either. When something is being "put" into the body, it is a foreign object and I don't think anyone can tell exactly how the body will react to that foreign invader until it is done. What is known is that immediately following the procedure (for a week), it is expected that the patient's breathing will get worse before it gets better in part, that's why they require hospitalization -- the most important reason for the hospitalization afterwards is in case of pneumothorax and that is something that needs to be addressed immediately if it happens. It did not happen to me for which I am very grateful and I am now past the time period that it could be a possibility. What I do suggest is if you consider having this procedure done, you seek a doctor who has experience doing this procedure. I do believe that is important! I'm sure each individual who receives the valves experiences them in different ways, depending on lots of various things, i.e., stage of disease, age, weight, height, etc. It all counts in the bigger picture as well as other health issues one may have. I do know there is a huge age range of people having this procedure and the outcome varies with each individual, too.

On another note, I believe we are all going to begin seeing a lot more on the horizon for helping patients with lung disease. Now that hospitals have figured out a way to make "fixes" profitable, I'm sure this will happen. I know of several things that are on the horizon, but I am not at liberty to say right now what they are. Whereas 10 years ago, the only choices were transplantation or LVRS, with the zephyr valves we are experiencing help to breathe easier and better. If you think this interests you, please contact your pulmonologist or Pneumonx to inquire about the Zephyr Valves.

Edited by - Diane-D on Feb 05 2019 11:05:56 AM
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Diane-D
Rookie

6 Posts

Posted - Feb 04 2019 :  7:50:19 PM  Show Profile  Reply with Quote
Jean, I prefer to go the structured route for now and have pulmonary rehab. It is also part of protocol. I am on two waiting lists to get into pulmonary rehab, but the places are very backed up here now. In the meantime, I continue to exercise somewhat. I have another health issue to address with one of my legs so I am somewhat limited to what I can do with one leg right now, although walking isn't an issue so far. When the time is right, I will be exercising on a regular basis.
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Cindi-TX
Member

USA
56 Posts

Posted - Feb 09 2019 :  4:17:24 PM  Show Profile  Reply with Quote
Hi Diane,
I just passed the 2 year anniversary of receiving 3 valves in my left lung.
I'm still eternally grateful every morning when I awake. I had 1 exacerbation shortly after and nothing since. During this time I have gone on 3 trips, including 1 to Europe, so it's a pretty big change.

Congrats on your life changing event!
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Diane-D
Rookie

6 Posts

Posted - Feb 11 2019 :  3:26:57 PM  Show Profile  Reply with Quote
Hi Cindi,

It's nice to hear from a valve "sister." Where did you have your valve procedure done? Was it done in trial? Do you ever have to use any o2? Do you mind stating how old you are? I wish you continued success with your life changing event!

Just be aware that even with the valves, the disease is still there. I hope someone out there finds a fix for the disease eventually. I do believe it will happen!
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Cindi-TX
Member

USA
56 Posts

Posted - Feb 11 2019 :  8:20:26 PM  Show Profile  Reply with Quote
Hi Diane,
Yes, in a trial 2 years ago in Houston, and Iam 68. You are so right, the disease is still there, in face I has a bad day today. I hope tomorrow is better, but even now I had enough good days to make it all worth it.
I communicate with a few others on my FB page who have either had or hope to have the same procedue. We all have varying degrees of success, but it is our common bond.
I'm not on this forum much, drop by time to time and saw your post.
Therefore, I'm not sure what is and isn't allowed anymore so I wish you success and I'll post a link to my page separately so that if need be, it can be deleted
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Cindi-TX
Member

USA
56 Posts

Posted - Feb 11 2019 :  8:29:48 PM  Show Profile  Reply with Quote
Ok. Cant paste link. But it's a FB page called Valve Trial
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Diane-D
Rookie

6 Posts

Posted - Feb 11 2019 :  8:40:48 PM  Show Profile  Reply with Quote
Cindi,

I hope tomorrow will be a better day for you! I think the strange weather most of us have been experiencing this winter across the U.S. is impacting this disease, too.

Do you use any o2 now?

Thank you for mentioning that page. I will leave you a message there, so you will know who I am!

Thanks so much for your response. This disease is hard to "do it alone." Healthy people don't understand what an awful disease this is -- even under the best of circumstances.
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