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 lung volume reduction Coil (RENEW) study
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bjd0316
Rookie

USA
14 Posts

Posted - Jun 17 2014 :  11:45:58 AM  Show Profile  Reply with Quote
Fred, sorry, but forgot to add, but I wish you the very best of luck regarding your lvrc! Please keep us all updated. Also, anyone else, who is presently involved or has already had lvrc, lvrs, transplants, or more...good luck and please keep us updated or share your experience with us, since it is not only interesting, but also encouraging too! #9825;
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PennyPA
Contributing Member

USA
5771 Posts

Posted - Jun 17 2014 :  12:46:55 PM  Show Profile  Reply with Quote
I had the LVRS at Duke in 2008. I didn't want to mess around with trials because at that time, they didn't put the coils in each trial participant. I knew LVRS worked and that's what I wanted...a proven procedure. In 5 years or so, the coils, hopefully, will be a non-surgical proven procedure. I wasn't brave enough for a TX!

You can read about my journey to LVRS below...and my travels around the country afterwards.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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PennyPA
Contributing Member

USA
5771 Posts

Posted - Jun 17 2014 :  1:19:37 PM  Show Profile  Reply with Quote
The only thing that will stop emphysema for MOST of us is not smoking that first cigarette....or stopping after we do smoke it.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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bjd0316
Rookie

USA
14 Posts

Posted - Jun 17 2014 :  1:21:02 PM  Show Profile  Reply with Quote
Penny, thank you so much! I have already read your journal, and found you and your surgical experience such an inspiration. I do consider the lvrs also, and what you said in your last comment is true, since it is a proven procedure. I also like it that the coils could be used as an extension for when the lvrs begin to expire some. I wonder if that could be true for the coils and how long will the coils last?
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PennyPA
Contributing Member

USA
5771 Posts

Posted - Jun 17 2014 :  1:27:48 PM  Show Profile  Reply with Quote
That's the purpose of the trials...to see how long they last, how they're received by the body, how well they do their job, etc. The coils (stents) in the heart seem to work just fine for most people. Hopefully, that will be the case with coils in the lungs.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS





Edited by - PennyPA on Jun 17 2014 1:28:59 PM
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bjd0316
Rookie

USA
14 Posts

Posted - Jun 17 2014 :  3:32:01 PM  Show Profile  Reply with Quote
Penny, I do like the purpose of these lung procedures, such as reducing the retained gases. I also hope the coils have a positive out look for the future. It sounds like the trials will be here for about five more years before passing them (if they do) for public use? .,
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mziegler
Member

USA
97 Posts

Posted - Jun 30 2014 :  6:28:40 PM  Show Profile  Reply with Quote
I just recently went for a followup visit regarding the LVRC study. I was informed that they will be offering me the follow on study option, so around Nov to Dec of this year, I should be able to get the coils implanted. Very excited about that. Was looking at getting listed for transplant, but now will put that on hold for a little while.

Melissa
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mziegler
Member

USA
97 Posts

Posted - Aug 02 2014 :  9:38:35 PM  Show Profile  Reply with Quote
Fredtx did you get the 2nd lung done? If so, how did it go?

Melissa
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fredtx
Rookie

USA
12 Posts

Posted - Aug 03 2014 :  2:52:14 PM  Show Profile  Reply with Quote
Melissa, I had my first LVRC procedure done on June 13. I had a followup exam and various tests on July 18. I am waiting for my copy of these results but I do know that my FEV1 increased 9.52%, my 6 Miunute walk increased 23% and my DLCO improved by 15%. Aside from these results, my QOL of life has exceeded my expectations. My next procedure will be in late September or early October.

Fred

Edited by - fredtx on Aug 03 2014 2:53:15 PM
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pmbroker
Rookie

USA
2 Posts

Posted - Aug 09 2014 :  9:36:32 PM  Show Profile  Reply with Quote
I am going into a Renew trial program next week 8/13-8/14/14 at a clinic in Mountain View California.It is a clinical trial where 50% of the people receive the coils and the other 50% go through conventional treatment for copd. They said if you are in the control group,(no coils now) they said after one year they would be available to the control group people. Everything I have read about the coils seems exciting to me, but I need to be cautiously optimistic about all of this.
I will follow up to this group next week after I go in.

A good rest of the weekend to all,

Jim P
Central coast of California

JP
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sttcapt
Rookie

USA
20 Posts

Posted - Aug 13 2014 :  7:01:51 PM  Show Profile  Reply with Quote
yes, thank you Fred on your post procedure results. I was selected by a clinical trial based out of Charleston, SC in December 2013 and have been going to BI in Boston. At first I was accepted for the Valve procedure but my RV wasn't @ 225 and my lungs didn't show enough separation. And this is after all of the tests and 6 week pulmo therapy. I was advised to come back in July and to re-test for the Coil procedure. On Aug 4th, I finished my PFT, 6 minute walk and all of the blood tests and will be heading back to BI on Aug 18th for the final tests which include CT scans, x-rays and a cardiac echo sound. They have lowered the requirements on the RV since I was told that none of the patients that were being tested for the coil qualified because of the RV number that the trial had set. Now they reduced the RV to 175 from 225 and that puts me in the qualified category. If I am approved, the procedure will happen within a week. I am truly looking forward to this procedure and I will let you know what happens.

Be strong, be positive...
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barenstam
Rookie

14 Posts

Posted - Aug 13 2014 :  7:06:13 PM  Show Profile  Reply with Quote
They reduce the RV requirement to 175? I met every requirement except my RV came in at 221. I guess I need to get in contact with BI.
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sttcapt
Rookie

USA
20 Posts

Posted - Aug 13 2014 :  7:29:48 PM  Show Profile  Reply with Quote
[quote]Originally posted by barenstam

They reduce the RV requirement to 175? I met every requirement except my RV came in at 221. I guess I need to get in contact with BI.

yes you need to call BI and arrange another Dr appointment. were you assigned a trial assistant? my TA is Aisha, a young woman from Nigeria and Dr Majid runs the trial. good luck.

Be strong, be positive...
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barenstam
Rookie

14 Posts

Posted - Aug 13 2014 :  7:48:01 PM  Show Profile  Reply with Quote
I sent Aisha an e-mail to see where I stand. I'm surprised I wasn't contacted when the FV requirement was lowered.
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PennyPA
Contributing Member

USA
5771 Posts

Posted - Aug 13 2014 :  8:03:09 PM  Show Profile  Reply with Quote
Barenstam, if your RV is at 221, it seems it's still too high to qualify.

Sttcapt, what do you mean by your lungs didn't show enough separation??

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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barenstam
Rookie

14 Posts

Posted - Aug 13 2014 :  8:08:05 PM  Show Profile  Reply with Quote
Penny, Previously you needed an RV of 225% or higher and mine was 221%. The new requirement is 175% or higher so in that case I would qualify.
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sttcapt
Rookie

USA
20 Posts

Posted - Aug 13 2014 :  10:10:55 PM  Show Profile  Reply with Quote
[quote]Originally posted by PennyPA

Barenstam, if your RV is at 221, it seems it's still too high to qualify.

Sttcapt, what do you mean by your lungs didn't show enough separation??

Here is what my TA emailed me about my CT scan and why I didn't qualify for the valves:

The target lobe (left lung, upper lobe) and ipsilateral lobe (left lung, lower lobe) was not separated with
an intact fissure. An intact fissure is usually estimated visually to be more or less at 90% complete with no segmental vessels crossing from one lobe to the adjacent lobe after viewing the HRCT in 3 dimensions.


Again, the TA mentioned my CT scan will be the determining factor in order to be approved for the coils despite what the other test results are.

Be strong, be positive...

Edited by - sttcapt on Aug 13 2014 10:14:07 PM
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PennyPA
Contributing Member

USA
5771 Posts

Posted - Aug 14 2014 :  01:00:02 AM  Show Profile  Reply with Quote
Okay, thanks for the explanation of the desired RV. I can't understand that they couldn't find candidates with greater than 225. Mine was at 232 liters before my LVRS. Dropped to 125% 4 months after the surgery.

As far as the separation between upper and lower lungs, I'm still foggy on that one, LOL.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS





Edited by - PennyPA on Aug 14 2014 01:00:55 AM
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mziegler
Member

USA
97 Posts

Posted - Aug 14 2014 :  4:11:29 PM  Show Profile  Reply with Quote
Fredtx thank you for your response. I am so happy for you and your improved QOL. I hope you can reap even more benefit from the next procedure. Needless to say, you are giving me great hope for success when I have the coils implanted. Good luck to you.
Melissa

Melissa
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sttcapt
Rookie

USA
20 Posts

Posted - Sep 12 2014 :  8:46:31 PM  Show Profile  Reply with Quote
hi everyone,

I was just accepted for the coil procedure to be conducted at Beth Israel Deaconess Hospital in Boston, MA. After being declined for the lung valve procedure this past winter, I began re-testing for the lung coil procedure in April. As stated in my previous post about the RV level being reduced from 225 to 175 was the turning point in my case.

I have a consult with the anesthesiologist and then I'll be given my procedure date in a couple of weeks.

Be strong, be positive...
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PennyPA
Contributing Member

USA
5771 Posts

Posted - Sep 12 2014 :  10:22:13 PM  Show Profile  Reply with Quote
Is there a guarantee that you'll get the coils or is it a toss-up?

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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sttcapt
Rookie

USA
20 Posts

Posted - Sep 13 2014 :  09:04:38 AM  Show Profile  Reply with Quote
i will receive the coils in my left lung within a couple of weeks and then in a few months based on further testing, i will receive coils in my right lung.

quote:
Originally posted by PennyPA

Is there a guarantee that you'll get the coils or is it a toss-up?


Be strong, be positive...
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sttcapt
Rookie

USA
20 Posts

Posted - Sep 21 2014 :  09:21:44 AM  Show Profile  Reply with Quote
My LVRC will be on October 2, 2014 at Beth Israel Deaconess Hospital in Boston, MA. I have a consult with my anesthesiologist on Sept. 29th. I start a 5 day 50mg prednisone & 250mg azithromycin on the 29th and my procedure will be on Thursday, Oct. 2nd.

I'll keep you posted.

Be strong, be positive...
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fredtx
Rookie

USA
12 Posts

Posted - Sep 22 2014 :  3:31:04 PM  Show Profile  Reply with Quote
Hey sttcapt, I had my left lung done via LVRC on June 13 and everything went fine. I am confidant that this will be as much a help to you as it has been for me. However I am curious about the treatment medication procedure you described. Did the coordinator indicate if this is a new requirement for the actual coil implant? In any event I hope everything goes as smoothly as my first one.

Fred
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sttcapt
Rookie

USA
20 Posts

Posted - Sep 27 2014 :  08:38:59 AM  Show Profile  Reply with Quote
hey fredtx. i never had to take 50mg of preds, my highest amount was 40mg taken on a taper. i think I'll be bouncing off the walls w/50mg. i asked my PA about this and she told me it was being used on all of the LVRC patients pre-procedure. i started to get a chest congestion a couple of days ago and started pre-medicating with azithromycin. it seems my chest starts to congest every 30 to 40 days. i start the 5 day antibiotics and a 30mg pred taper and i'm fine after 4 days for 3 to 5 weeks and then it starts again. it's timing isn't good, i'm a bit concerned they won't proceed with the coils if i have a chest infection. hopefully by thursday i'll be back to my normal COPD way.

any advice you have for me coach would be appreciated.

Be strong, be positive...
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Sokcap48
Senior Member

USA
760 Posts

Posted - Sep 27 2014 :  08:58:00 AM  Show Profile  Reply with Quote
Sttcapt- hey there good luck.
Do you use a flutter valve or accapella and " huff cough" on a daily basis? If not it might help to rid yourself of as much mucus as possible. My Pulmo has me flutter valve 5 times a day. Don't always get stuff up and out but do a lot of the time. Every little bit helps I think.
Paul

Paul-Ut
The Journey Continues.
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fredtx
Rookie

USA
12 Posts

Posted - Sep 27 2014 :  09:44:09 AM  Show Profile  Reply with Quote
sttcapt, I do not have anything I can say other than I believe in the LVRC procedure. Have a great day

Fred
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fredtx
Rookie

USA
12 Posts

Posted - Sep 27 2014 :  09:48:18 AM  Show Profile  Reply with Quote
sokcap48, I have been experiencing a flareup with bronchitis and take both Mucinex and NAC which has been very helpful in getting that stuff out

Fred
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sttcapt
Rookie

USA
20 Posts

Posted - Sep 30 2014 :  12:07:08 PM  Show Profile  Reply with Quote
went to Beth Israel in Boston yesterday and met with the anesthesiologist for final exams and consult. Everything seems fine and i'll be admitted 6am on thursday, october 2nd for a 7:30am LVRC. wil try to update from my room post procedure. stay tuned.

Be strong, be positive...
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fredtx
Rookie

USA
12 Posts

Posted - Oct 01 2014 :  08:54:26 AM  Show Profile  Reply with Quote
I will be having coils implanted in my right lung on October 13. This is exactly four months after having my left lung treatment. I am anxious to get this done to see how much more improvement I will experience.

Fred
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Sokcap48
Senior Member

USA
760 Posts

Posted - Oct 01 2014 :  1:18:08 PM  Show Profile  Reply with Quote
Best wishes to both of you. Thoughts and prayers.
paul

Paul-Ut
The Journey Continues.
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sttcapt
Rookie

USA
20 Posts

Posted - Oct 04 2014 :  2:46:01 PM  Show Profile  Reply with Quote
At 0600 on October 2nd, I was admitted and prepped for the LVRC procedure at 0730.

Houston, we have a problem.

Here is Dr. Majid and Dr. Chung's summary on my case:

The Dr's performed a bronchoscopy introduced through an endotracheal tube and advanced under direct visualization until the tracheobronchial tree was reached. The procedure was not difficult. Flexible bronchoscope introduced via size 8.0 ETT.

Tracheobronchial tree notable for thick, yellow secretions in the trachea and bilateral mainstem bronchi. The procedure was not difficult. The quality of the preparation was good. The patient tolerated the procedure well.

The following complications were noted: Therapeutic aspiration of secretions performed and sent for microbiological studies. Bronchoscopic lung volume reduction not performed given the above findings.

I awoke with the nurse standing over me with a big smile and informing me of the decision not to proceed with the coils today due to the secretions (mucus) in my lungs. Bummer! Dr's came in and explained to me what the next step will be and hopefully I will return in a couple of weeks with a green light for the LVRC. I felt very good,and for coming out of an anesthesia for an hour, remarkably alert. I was released and went home feeling quite well and energized. The next day is when the reality of the procedure started. I awoke with a soar throat and did not feel good at all. My chest area felt constricted with a small amount of pain attending, but did not cough up any traces of blood which the Dr said might happen. I took Ibuprofen throughout the day and started my 7 day Levofloxacin antibiotic to purge the mucus out of my lungs. I suppose when the body is infiltrated with a foreign object being slid down your throat to look at your lungs, a defensive reaction from the body is clearly expected! Hence the pain and slight fever.

According to the Dr's, I would experience no pain in the chest where the coils are placed, but will have a throat irritation with a possible fever for a day or two. This did occur and now in my second day of discomfort. I am feeling a bit better and looking forward to a normal recovery.

Any questions please feel free to message me.

Be strong, be positive...

Edited by - sttcapt on Oct 04 2014 2:49:23 PM
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fredtx
Rookie

USA
12 Posts

Posted - Oct 05 2014 :  09:55:45 AM  Show Profile  Reply with Quote
sttcapt how disappointing that experience had to be, hopefully the problem will get fixed and you can go forward from there.

Fred
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Sokcap48
Senior Member

USA
760 Posts

Posted - Oct 05 2014 :  10:22:07 AM  Show Profile  Reply with Quote
Sttcapt- sorry to hear that. Hopefully you will get that mucus taken care of and get the green light again real soon! Keep us up to date.
paul-ut

Paul-Ut
The Journey Continues.
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barenstam
Rookie

14 Posts

Posted - Oct 05 2014 :  11:40:35 AM  Show Profile  Reply with Quote
On Friday I was told I had been approved for this trial. I am tentatively scheduled for october 24th at Beth Israel in Boston.
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sttcapt
Rookie

USA
20 Posts

Posted - Oct 05 2014 :  1:49:25 PM  Show Profile  Reply with Quote
most excellent. perhaps we might be doing the LVRC on the same day. My mucus is almost out of my system and now is the time my cycle allows me to become mucus free for about 2 weeks after i medicate with preds and antibiotics before it starts again.

God speed...

Be strong, be positive...
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mike - Vegas
Rookie

USA
13 Posts

Posted - Oct 18 2014 :  4:32:09 PM  Show Profile  Reply with Quote
I received 10 coils in my left upper lung in San Antonio Oct. 13th. My procedure directly followed Fredtx's, did not meet him but his comments have been very encouraging. This is the fifth day after the procedure and of course I still get short of breath but less often. My recovery time is also shortened. I had no throat pain or any discomfort, still coughing up small amounts of blood. Great staff in San Antonio and I look forward to the second procedure.
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sttcapt
Rookie

USA
20 Posts

Posted - Oct 18 2014 :  5:41:22 PM  Show Profile  Reply with Quote
that's fantastic Mike. How long did they keep you in the hospital? How long before they do the next procedure?

I received the call on from Boston that its a confirmed date for my second attempt on Nov 3rd.

Be strong, be positive...
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barenstam
Rookie

14 Posts

Posted - Oct 18 2014 :  8:57:59 PM  Show Profile  Reply with Quote
I'm scheduled for November 14th at Beth Israel in Boston.
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fredtx
Rookie

USA
12 Posts

Posted - Oct 20 2014 :  2:40:07 PM  Show Profile  Reply with Quote
I had my second LVRC procedure on October 13, in San Antonio where 10 coils were implanted in the upper lobe of my right lung. After seven days my results are are virtually identical to what Mike - Vegas stated above. While I am satisfied with the improvement in my QOL I fully understand that I still have emphysema/chronic bronchitis and that is not going to change until there is a cure for these conditions.

I thing it is important to remember that this is a trial and other patients may or may not see any of the improvements I'm experiencing. We are all different and our PFT test results are only applicable to us. I remember years ago a pulmo of mine said that the results of PFT tests are numbers, but it is far more important to rely on how we actually feel. That does not mean that I am not curious to compare my PFT results pre-LVRC and post LVRC. Once I get that information I will post them.

I do want to thank each of you that have been supportive to me during this whole process.

Fred
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