COPD Support Discussion Boards Active Users: 302 / Visits Today: 1669
Highest Active Users: 477
COPD Support Discussion Boards
Home | Profile | Register | Active Topics | Members | Search | FAQ
 All Forums
 COPD Forums
 Transplant & LVRS Topics
 Pneumonx Zephyr Valves

Note: You must be registered in order to post a reply.
To register, click here. Registration is FREE!

Screensize:
UserName:
Password:
Format Mode:
Format: BoldItalicizedUnderlineStrikethrough Align LeftCenteredAlign Right Horizontal Rule Insert HyperlinkInsert EmailInsert Image Insert CodeInsert QuoteInsert List
   
Message:

* HTML is OFF
* Forum Code is ON
Smilies
Smile [:)] Big Smile [:D] Cool [8D] Blush [:I]
Tongue [:P] Evil [):] Wink [;)] Clown [:o)]
Black Eye [B)] Eight Ball [8] Frown [:(] Shy [8)]
Shocked [:0] Angry [:(!] Dead [xx(] Sleepy [|)]
Kisses [:X] Approve [^] Disapprove [V] Question [?]

 
Check here to subscribe to this topic.
   

T O P I C    R E V I E W
Diane-D Posted - Feb 03 2019 : 9:01:56 PM
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!
27   L A T E S T    R E P L I E S    (Newest First)
Sokcap48 Posted - Jul 11 2019 : 7:14:42 PM
Yes please keep all up to date.
hapolati Posted - Jul 03 2019 : 11:14:48 AM
Update: Received the Zephyr Valve procedure June 27 at U of Chicago Medicine. Five valves in lower lobe. In next few weeks, I will start another thread describing the experience and concluding if it helped me feel and function better. Diane started this thread -- I don't want to hijack it. Hopefully, she will keep communicating about her journey.
hapolati Posted - May 28 2019 : 4:14:35 PM
Some updates...Firstly, this thread should correct the title: It's Pulmonx Valves, or more generally, just Lung Valves. Diane started the thread -- very positive about Dr. Sue of Banner Lung Institute in AZ --
she called him "a gem of a person." (see above) Subsequent posts were also positive, but then she changed her opinion about Dr. Sue, Banner University, and Zephyr valves (see above). She was apparently disappointed by the results of her procedure and felt mislead. Similarly, she changed her opinion about the Facebook group site called Lung Valves for Friends. She suggested it was a sort of pawn of the Pulmonx Corp, originator of the Zephyr valves procedure. Cindy, co-founder of the Facebook site, angrily disputed the claim (see above).
So what's my connection? I had been in e-mail communication with Dr. Sue and also using the Facebook site to learn more from the small number of procedure recipients. (The Facebook group numbers about 400 now but only about a dozen seem to have actually undergone the procedure. At least one, like Diane, was disappointed in the results.)
The positive seemed to outweigh the negative, so I was ready to get it done. Dr. Sue said my records and CT scan indicated that I was a qualified candidate. But a major problem for me would have been repeated travel to AZ. from WI. Dr. Sue suggested a couple doctors and hospitals in nearby Chicago who could do the procedure and volunteered to forward my records to them. Like Diane originally said, I felt he was "a gem of a person."
So in the next month or so, I will hopefully do the final tests in Chicago. And, in any case, not raise my expectations too high. Even a 5% improvement in Fev1 would be great! (currently very severe at 26% ). Will report back later. Meanwhile, I do recommend Dr. Sue, Banner University, and Lung Valves for Friends.
Cindi-TX Posted - Apr 23 2019 : 8:56:35 PM
I am admin to a CLOSED group, i.e. we do not disclose private information without PERMISSION!
Since I am outed already, the name Lung Valves for Friends just might indicate that we are about lung valves.
The most factual information posted about me, without my permission, is that I did receive Zephyr valves from Pulmonx 2 years ago. The fact that I had no options, except death, a lung transplant or a trial made an easy decision for me. During that time, I received the very best medical care that I have ever experienced. Regarding the statement that I am often sick or not feeling well is not an accurate statement either. I have been sick lately, I have acute bronchitis, I have 1 fairly good lung, and 1 really sick lung, it happens. I used to be sick every day of my life. This is better. I have other ailments, such as osteoarthritis, therefore I dont always feel well

Yes, I sing the praises of Pulmonx and Zephyr valves. Why wouldn't I? I cant begin to thank them enough for what they did for me. I am NOT on their payroll.

I have spent much time in the last 7 to 8 years in doctors offices and hospitals. I have seen much suffering and one thing strikes me over and over again, and that is despair, hopelessness. This is one thing I can try to do. I dont give people false hope, I know there are limits, to what anyone can do. I can talk about and write about my own search. I too,felt hopeless, stigmatized, marginalized. When I can do nothing else, I can tell someone that someone truly cares about them. Me.

Just arbitrarily trashing big companies is one of the stupidest things I can thing of. Who does the research except them? What of doctors? Dont like them, go eat some kale and do some yoga..cures all right?
I do not like vague terminology, when we speak of people dying, now many is SEVERAL? Who is this reliable source?
What is this misinformation that I have allegedly spread? If I am to be accused let's do it to my face instead of behind my back.
Somehow, I cant help but wonder, will this post be pulled, or even be submitted I guess we will see
Dave-OH Posted - Apr 21 2019 : 6:56:21 PM
Valves are long reduction alternatives and belong in this section.
Diane-D Posted - Apr 20 2019 : 4:39:06 PM
Dave-OH, Hope you had a Happy Easter! Somehow the message I sent you regarding Terry Farley's e-mail address was miscommunicated to you. I would greatly appreciate your response to me deleted and this message as well. Both are unrelated to the Zephyr Valves which this thread is supposed to be about -- not transplantation.
Dave-OH Posted - Apr 20 2019 : 11:59:10 AM
I do not check this email when traveling. I am out of town until Monday night, visiting family.

As for transplant centers, most will not do someone over 70. I have been told by a candidate that the Indy center might, but not for all diseases.
Diane-D Posted - Apr 20 2019 : 11:42:07 AM
paulmjo, You must have not read the thread all the way down. Please do and you will see I am not pleased with my outcome or the person who was my doctor. I'm sorry that up until now you have been unable to get any help for your lung situation, but please don't give up. One never knows what may happen soon to help people that have lung disease. There must be something in-the-works that is better than the valves. I would rate the valves as unsatisfactory since they did not do what they were supposed to do on me, and I believe on a lot of other people, too.
paulmjo Posted - Apr 20 2019 : 09:12:37 AM
So glad you had a good outcome, I tried several hospitals to qualify, but not a candidate because my disease is wide spread throughout both lungs and not in a specific lobe, hope your quality of life is much improved. I have been to Duke, Tampa Regional, Mass General and Miami Transplant center also turned down, some said not bad enough, some too old, some too risky at 74. Just keep plugging along. A friend at 73 had double lung transplant for pulmonary fibrosis a year ago and was going up and down stairs day he left hospital without O2. Made me jealous.
Diane-D Posted - Apr 20 2019 : 01:24:49 AM
Hapolati/Terry Farley, Tried contacting administration through membership here and was not successful. You may contact me easily on FB. Send me an IM there. Diane Wasserman-Drell. I look forward to hearing from you and connecting with you. We may be able to help each other. Based on the information I received today, there may be a lot of controversial discussion about the valves at the ATS Convention next month in Dallas. There is a lot of uncertainty about this procedure with doctors -- some of which were supposed to be involved in doing the procedure and are reluctant to begin. If you are in Wisconsin, it was my understanding that Northwestern University/downtown Chicago was supposed to have started doing it. Did you check with them? Also, there is big money involved with doing this procedure. Now, are you surprised about the hype? The root of all evil as my mother used to say is money. Bernie Madoff thought he was very smart... and all the people like him that are out there -- always at the expense of other people in one way or another. Please proceed with caution. Your life may depend on it.
hapolati Posted - Apr 19 2019 : 6:14:12 PM
Thanks again for your time and energy sharing your story. I hope others will join the topic thread, but since the approved valve procedure is new, few can speak. In my correspondence with Banner University, I was told that they have performed the Zephyr procedure more often than any other facility. Compared to the few other University hospitals I contacted, it responded quickly and helpfully. As things now stand, I await their invitation to visit for final acceptance. Arizona is a long way from Wisconsin, but the closest possible alternative I could find was in Louisville, Kentucky. Several others said they were in the process of finalizing their program.
As you mentioned, it is difficult to learn of any criticism of the Zephyr procedure, and, like you, I have suspicions about some of the gung-ho endorsements on Pulmonx related websites. Hopefully, more independent, honest voices will emerge (pro or con).
I have many more questions I would like to ask you. but don;t know if this thread is the place. I permit the administrator to give you my e-mail address if that is allowable. Keep in touch!
Diane-D Posted - Apr 19 2019 : 1:53:11 PM
Terry Farley, I appreciate and respect your input and honesty... just as I'm sure you appreciate and respect mine. However, I have one additional part vs. you to add to this mystery -- the experience of having had the procedure at Banner, plus follow-up that was much less adequate than you could ever imagine and VERY unprofessional in every way at Banner University Lung Institute with Dr. Richard Sue. As you can see, I posted yesterday on this site. By late afternoon, I received important information regarding my outcome (that I had no idea would happen yesterday). Dr. Richard Sue initially told me that my treated lung collapsed completely -- which is exactly what is "supposed" to happen. Dr. Sue was "thrilled." Yesterday late afternoon, I learned the truth. I had a "partial" collapse of my lung as evidenced in my CT scan. I am typically not a whiner and complainer unless I REALLY have something to whine and complain about. Now it becomes more obvious why I felt I've received no benefit -- because I don't think I have. The doctor that is now involved with me feels it is "possible" that I may still have more collapse of my lung. I think that is him just trying to give me "hope" and being "kind." The benefit for this procedure should have already happened -- within 45 day after the procedure! Should you choose to move forward with the procedure, I would suggest you pick a place other than Banner in Phoenix for numerous reasons. I hope you make the right decision for yourself -- whatever it may be. We COPD patients (myself included) are desperate to find "something" to help us breathe better. My suggestion to you would be to try going into physical therapy for your breathing (under the guise of pulmonary rehab) and first see if that benefits you in any way. If it does, you may want to be in a hold pattern for awhile until further data is known. I am positive I am not the only one who experienced what I did. People that had results like me are more difficult to find -- not that they don't exist. That one fellow, Art Ross (on Lung Valves for Friends) is another example. As Steve Jobs once said, 'It is always easier to connect the dots looking backwards." That is now my experience, although I assure you it will not end here with all the lies I was told and what I've been through. That is for sure! And however Lung Valves for Friends is connected to Pulmonx I am not sure, but I'm just about certain, there is a connection! The truth will be known eventually. I sincerely wish you the best. Do whatever you feel is right for yourself... just pay attention to your intuition and what your heart tells you. Best of luck. Should I find out any further information, I will make another appearance here as I continue to search for something else that may appear on the horizon for us COPD/emphysema sufferers. Many thanks for your response.
hapolati Posted - Apr 19 2019 : 11:10:56 AM
Thank you for the extremely interesting information about your Zephyr valves experience. I have been in e-mail communication with Dr. Sue and sent my PFT results and CT chest scan disc. I was prepared to travel for the procedure if accepted. I was encouraged by the "Lung Valves for Friends" facebook site. After reading the above account of your negative experience, I feel myself putting on the brakes. I will redouble research. I was puzzled why so few hospitals are offering the procedure.
Still, the "it changed my life" testimonials found on Youtube and Pulmonx sites motivate me. Your testimony is sobering and much appreciated (even if I ultimately go with Zephyr).
Diane-D Posted - Apr 18 2019 : 2:44:53 PM
I am ready to update anyone who is interested in the Zephyr Valves. To reiterate, my procedure was done on November 26, 2018 in Phoenix, AZ at Banner University Lung Institute. The doctor was Richard Sue who performed the procedure. He also resides in Geneva, Switzerland and was very difficult to reach and was mostly unavailable to me -- his patient. He made promises to me he never kept about appointments and even lied to me. For a very short period of time after my procedure, I felt I benefited from having it. Now, four months later, I don't feel there was any benefit at all. In fact, I may have even regressed and be worse than I was to start with, even though I have four Zephyr Valves that remain in my left lung. Pulmonx has changed all their written verbiage and marketing recently to reflect things much differently than what I was initially told would result -- which was that I would be 'breathing easier and better.' That all changed within the past couple of weeks in their written internet publications to say something to the effect of the patient will breathe easier, but the word "better" is now eliminated. The breathing easier is qualified by saying the patient needs to be exercising to make it happen "and have a better quality of life." So, If being de-conditioned is the problem, who needs to have valves inserted into their lung that don't work? I am in the process of having my experience and outcome investigated. I highly recommend that NO ONE gets the Zephyr Valves, and I have no recommendation about the Inspiration Valves that are now available. I do not think the valves are the solution to any of our COPD problems. There have been ongoing problems with the valves since their inception over 10 years ago. I think they create more problems as indicated by a very authentic source that informed me "several people" at one location have wound up in intensive care units and have almost lost their lives due to the insertion of the Zephyr Valves. And I also highly recommend to stay away from Lung Valves for Friends on Facebook. It is a "pro" Zephyr Valve site and there is a lot of misinformation being circulated there. The person who runs that page Cindi-TX (as shown below and who found me here) is certain to get what's due her when the time is right. She is pushing the Zephyr valves, based on I'm not sure what. She received hers from being in a trial a couple of years ago and she is often quite sick or not feeling well. There seems to be a connection between her and Pulmonx, too, although she denies it. As far as what's out there right now that I would consider for myself or anyone who has COPD/emphysema is nothing. I am a recipient of the BTVA which is a remarkable procedure and I believe is very advanced now (since the time I experienced it in 2010), but based on their website information, it is not available in the United States. I hope there will be something new on the horizon soon that helps us. We are all long overdue. Our lives depend on something good happening SOON... Never ever give up...
Diane-D Posted - Mar 27 2019 : 1:29:08 PM
Terry Farley (or anyone else that is interested),

There is a page that Cynthia Dugas started and is the Administrator of on Facebook called "Lung Valves for Friends." If you join us there, you can probably find answers to many, if not all of your questions. You can also ask any questions you may have and make comments to other people's posts. That page is growing leaps and bounds. In a month, there are approximately 100 members and it is growing every day to the point where it's getting a little bit difficult to read now, but you will be able to scroll throughout and see all that's there. Look forwarding to seeing you there.

hapolati Posted - Mar 27 2019 : 11:42:41 AM
Diane and Cindy: As one who is contemplating getting the Zephyr valve procedure, I am anxious to hear any and all first-hand experience. Periodic reports of your condition or progress would be greatly appreciated and useful. Don't know how to contact you individually.
Thanks!
Diane-D Posted - Feb 11 2019 : 8:40:48 PM
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.
Cindi-TX Posted - Feb 11 2019 : 8:29:48 PM
Ok. Cant paste link. But it's a FB page called Valve Trial
Cindi-TX Posted - Feb 11 2019 : 8:20:26 PM
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
Diane-D Posted - Feb 11 2019 : 3:26:57 PM
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!
Cindi-TX Posted - Feb 09 2019 : 4:17:24 PM
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!
Diane-D Posted - Feb 04 2019 : 7:50:19 PM
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.
Diane-D Posted - Feb 04 2019 : 7:44:30 PM
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.
jmrommes Posted - Feb 04 2019 : 1:53:53 PM
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.
hapolati Posted - Feb 04 2019 : 11:39:29 AM
Thanks for posting about your experience. Would like to hear much more. You won't be boring us if you go into details!
Diane-D Posted - Feb 04 2019 : 10:43:37 AM
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.
jmrommes Posted - Feb 04 2019 : 08:56:58 AM
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.

COPD Support Discussion Boards © Copyright COPD-Support, Inc. Go To Top Of Page
Snitz Forums 2000