Finally A Ray Of Hope

By frankie3

1 min read

I'm 59 With Stage 4 COPD And Emphysema. It's Only Been 2 Years Since I Was Diagnosed But Have Went Downhill Really Fast. To The Point I Can Not Do Much Of Anything. Depression Has Tried To Take Over But I'm Fighting With All I Have To Not Let It. I Have Anxiety And Panic Attacks From Going Out And Have Just About Stopped Going Anywhere Unless It Was For Doctor Appointments. It Takes Everything I Have To Get Ready To Go Anywhere So It's Easier Just To Stay Home. My Pulmonary Doctor Told Me My Only Option Was A Lung Transplant But I Was Not Ready For That At This Point In My Life. Came To Conclusion That My Life Was Ending And Talked About It With My Husband And We Cried And Held Each Other And Talked And Accepted It. Then I Started Looking Into The Zephyr Valve Procedure And Went For All The Testing To See If I Qualified And I Did. So Come July I'm Going To Go In And Start A New Journey And Hope It Gives Me Some Quality Of Life Back. May God Give Me A Little More Time With This Procedure And The Breath To Do More So I Can Feel Like I'm Doing Something Instead Of Just Taking Up Space.

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Leon Lebowitz, RRT Member
<inline-mention username="frankie3" user-id="2426792"/> Hi frankie, and thanks so much for sharing so candidly your present circumstances managing this condition. You have been through a great deal physically, mentally and emotionally. My heart goes out to you! It was touching to read about how both you and your husband supported one another for the 'end of life' discussion. How uplifting to hear that you are a candidate for, and plan to have the endobronchial valve procedure. Several of our community members have weighed in following their own procedure and seem to be doing quite well. I am hoping the same for you! If there is anything we can do to assist you, please let me or any other moderator / team member know. Please do check back and let us know how this all turns out for you. We are all pulling for you! All the best, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
whirledpeas Member
Hi frankie3, Just to let you know, I had the valves inserted in Feb. of 2020. I am at the very severe stage as well. I am 72. I had been on full-time supplemental oxygen for about three years. My pulmonologist inserted three valves into my upper left lobe, which released air which was preventing the lower left lobe (which was the one in best condition) from functioning. It is a slow, gradual, subtle process, but I could tell a positive improvement in a few weeks, and by three months I was able to go without oxygen except for sleeping. In recent months, I have felt an additional small amount of improvement. For me, it was a life-changer. Best wishes, and big hopes for success.
Jackie English Moderator & Contributor
<inline-mention username="frankie3" user-id="2426792"/> Thank you for sharing your story with us. I am so sorry that you have been feeling this way. I agree anxiety is hard to deal with at times. I'm so glad that you are checking into the valves. I hope this helps you. I know a few who have had it done and they say that they are so glad that they did. Please keep us updated! Best, Jackie (moderator)
PattyPage Member
Frankie3, I just read your post about the procedure you're going to have and I wish you and your husband all the best in the world. I actually just found out about this today on the news. Wishing you the best!
1. Leon Lebowitz, RRT Member
 <inline-mention username="PattyPage" user-id="4201457"/> Hi Patty, and thanks for lending your own support and encouragement here. Like you, we all wished <inline-mention username="frankie3" user-id="2426792"/>, well. Since Frankie's post is from June of this year and, the procedure was scheduled for July, we are all hoping to hear back from her soon. We appreciate you following up here with your own personal post. All the best, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
2. frankie3 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> I Ended Up Waiting Till December Checked In Hospital Went Into Surgery, Was Put To Sleep And Woke With Them Telling Me It Couldnt Be Done.So Was Advised To Go To Duke And They Are Testing Me For Lung Reduction Which I Go Back Again In May To Be Recheck And If Things Hadnt Changed I Will Be Refered Over To Transplant Team.
gulliver07 Member
Frankie3 I read that you had the Zephyr Valve procedure done in July 2021. I also qualified for this to be done. Waiting for my initial consult with the doctor. Had to wait due to Having Covid twice & daughter diagnosed with stomach cancer. The hospital in Alabama doing this is a 4 hour ride away for me. My Pulm. Doc. In town didn’t even know about the valves until I told him what they were. My question to you is : how are you feeling now - did the valves help your breathing ? Any problems associated with the procedure- how often do you have to go back for checkups where you had it done ? Any pertinent info you can give me would be greatly appreciated .You can message me. Or answer on this site. Thank you .
1. frankie3 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> Thank-You So Much For Your Concern. I Went To Duke On Feb.11 And Did Some Testing And My Lung Volume Test Was To Low So They Are Putting Me In Physical Rehab For 2 Months And I Go Back May 13 To Get Rechecked To See Then If I Qualify For Lung Reduction Will Keep You Updated.Thank-You
2. Leon Lebowitz, RRT Member
 <inline-mention username="frankie3" user-id="2426792"/> Hi again, frankie - thanks for the latest update!! This sounds like, by participating in physical rehabilitation, you may have an opportunity at giving yourself a better chance for being a good candidate for lung reduction surgery. Do the best you can - by keeping at it, you may start to see a gradual improvement over time. That is probably why they provided you with a 3-month window. Again, please do check back and keep us apprised of your progress. Warm regards, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
gulliver07 Member
whirledpeas Just read that you had the Zephyr Valve procedure done in 2020. I am a candidate for this also. I am 78 with severe emphysema. How are you doing now ? Did the procedure help you -were there any complications or problems afterwards- how often did you have to go back to the hospital for follow up appts. ?? I also just wrote to frankie3 asking his sentiments. I have heard that several people didn’t do well with the procedure. Just trying to get a few results from people. A bit scared but really need to have this done as my breathing is getting terribly worse. Please message me on this site. I have problems getting this spite at times. Thank You so very much. Any info would be greatly appreciated.
1. whirledpeas Member
 <inline-mention username="gulliver07" user-id="2403960"/> i just responded to you above, before I saw this. Do it. Best thing I ever did.
gulliver07 Member
Jackie English - moderator Just read that several people you know of had the Zephyr Valve procedure done. I am waiting to have this done also. Had to postpone due to having Covid and a daughter diagnosed w/ Cancer. I am 78 with severe emphysema, breathing is getting terribly worse. I have heard pro and con about this procedure. Could you please tell me or put me in contact with people that have has this done ?? Would really like to get their opinions on the procedure. Would rather get true opinions from actual patients as my Pulm. Doc. Knows little about this. The hospital I will be going to is UAB in Alabama. A four hour ride from where Live. Waiting to get an appt. with a doctor there for additional testing and consult. Answers from people who had this done would be a great help to me as it gives me some input as to what I should ask. Than you. You can message me at : annmcnar@frontier.com or this site. I do have problems messaging on this site at times. How do I respond to someone ??. I. It’s be doing something wrong !!! 
1. whirledpeas Member
 <inline-mention username="gulliver07" user-id="2403960"/> I had it done just two years ago in Feb. Best thing I ever did. I am in so much better condition than I had been for the previous 5 years. I'm a 73-year-old Grandma. I am now recovering from my first illness in three years, stage 4 COPD, and starting to feel like I did before I got sick. I am so grateful to my doctor for suggesting it to me. I was his third patient to have this done, right before covid, and he has now done 48. Only one didn't work out. The valves do whistle sometimes, But who cares? <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> 
2. Leon Lebowitz, RRT Member
 <inline-mention username="whirledpeas" user-id="2415812"/> Hi again, whirledpeas. Thanks so much for sharing your own personal experience with the endobronchial valve procedure, now in place for two years for you. We value your candor with the community as well as your lending your own encouragement and support! Warmly, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
gulliver07 Member
oops: meant to say -I must be doing something wrong. 
1. tomboyer46 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> Leon, I am searching all over, obviously missing it but I can't locate the requirements one must have to get this procedure done. Asking for your assistance, again. Thanks.
2. Leon Lebowitz, RRT Member
 <inline-mention username="tomboyer46" user-id="4140736"/> Hi Tom - good to 'see' you here again. If you are speaking of the endobronchial valve procedure, sure - I can help! I know it's not always easy to locate information within our community, don't be concerned! For your convenience, here is a link to several of the articles we have published, here on <a href='https://copd.net' target='_blank'>COPD.net</a>, which focus on this type of procedure: https://copd.net/search?s=endobronchial%20valve%20procedure. I do hope you find the information within these articles! If we can assist you further, please just let me or any other moderator / team member know. Wishing you well, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
gulliver07 Member
frankie3 Thank You for responding to my post. Sorry to hear that you could not have the Zephyr Valve procedure done. I wish you the best on your other options. Sadly the Zephyr procedure is the only thing that I can have done as my doctor said I would not survive any other type of surgery as I cannot be put under anesthesia for any length of time. The Very Best to you.
gulliver07 Member
@jackieenglish Thank you for responding to my post. When are you scheduled to get your procedure done ?. I would Greatfully appreciate any info you could give me or share anyone’s results regarding the Zephyr Valve procedure. 
1. whirledpeas Member
 <inline-mention username="gulliver07" user-id="2403960"/> I had it done two years ago, and went from 24/7 O2, to just sleeping with it, and to being able to treadmill up to 10 minutes at a time. Do whatever it take to get it done.I am recovering from a long bout with COPD, but getting back to where a semi-normal 73 year-old grandma should be.