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 lung volume reduction Coil (RENEW) study
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Bob07
Rookie

USA
3 Posts

Posted - Jul 07 2016 :  10:42:45 PM  Show Profile  Reply with Quote
The trial is over and the results were disapointing. Overall there was a measureable but slight improvement for the patients in the treatment group. The results were published in the Journal of the American Medical Association (JAMA). Here is the link:


http://jama.jamanetwork.com/article.aspx?articleid=2522517

Treatment group only showed slight improvement over control group when it came to 6 minute walk test, pulmonary function test (PFT), and the St George Resperatory Questionaire (SGRQ).
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barenstam
Rookie

14 Posts

Posted - Jul 08 2016 :  07:04:57 AM  Show Profile  Reply with Quote
In hindsight I would not have taken part in the trial.
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PennyPA
Contributing Member

USA
5878 Posts

Posted - Jul 08 2016 :  11:07:44 AM  Show Profile  Reply with Quote
BUT, did the treatment group experience fewer periods of SOB and/or other exercise limiting symptoms? That's why I had my LVRS...merely to get rid of the sob. I didn't care what my FEV1 was or how much farther I could walk during the 6 minute walk test before I desatted...I just wanted to get rid of the sob!! And it did.

****************************************************************
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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p.sunde
Member

42 Posts

Posted - Jul 09 2016 :  10:06:46 AM  Show Profile  Reply with Quote
Well i had my second lung done on June 30th and all i can say is WOW !!!!!! 1 hour after i got out of hospital i swam with my grandaughtar for 3 hours YES 3 hours i am very happy so far with my results. I believe my success so far is i did not relie on the coils i more relied on myself exercise is the key. I figured if my lungs cant take care of my body my body has to take care of my lungs.The coils have been an added touch to my health.Now in Minnesota the trail is still ongoing.
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PennyPA
Contributing Member

USA
5878 Posts

Posted - Jul 09 2016 :  11:05:08 AM  Show Profile  Reply with Quote
I like that thought..."If my lungs can't take care of my body, my body has to take care of my lungs"! The reason for exercise.

****************************************************************
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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p.sunde
Member

42 Posts

Posted - Dec 12 2016 :  09:14:24 AM  Show Profile  Reply with Quote
Well it has been 6 mouths now since my coil implants and things have been going extremely well . It seems like every thing l do gets easier and easier.l walk a mile 7 days a week lift 4 days a week and my favorite is my sauna for a hour every day. The sauna seems to keep my lungs totally clear of all mucus. Hope everybody else are well. Next checkup is in april.
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PennyPA
Contributing Member

USA
5878 Posts

Posted - Dec 12 2016 :  10:08:17 AM  Show Profile  Reply with Quote
That sounds great! Congratulations! Keep us posted so we can see how you're doing over time.

****************************************************************
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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cindy414
Rookie

USA
14 Posts

Posted - Feb 27 2017 :  5:54:57 PM  Show Profile  Reply with Quote
I am curious how everyone is doing who got the coils.
It will be 2 years in July for me. Now I only use oxygen when I exercise and sleep. I am much less short of breath. I also use less medication. I can walk up to 5 miles and over 6 days a week. I do the Elliptical 3 times a week 20 minutes per time.
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p.sunde
Member

42 Posts

Posted - Mar 06 2017 :  08:33:29 AM  Show Profile  Reply with Quote
Hi Cindy , I am glad you are doing well,It has been almost one year for me and I feel great,I go back April 17th for my one year check up.I do have one product i added to my recovery it is MSM sulfur, which is already in are cells just not enough and more once food is processed sulfur is gone and our body's need sulfur check it out it rebuilds our lung cells have been on for 6 months now and it helps a lot its a food not a suppplement make sure it is organic not a pill off the shelf
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cindy414
Rookie

USA
14 Posts

Posted - Mar 10 2017 :  6:24:05 PM  Show Profile  Reply with Quote
Hi P.sunde ,happy your doing well.
How do you take it?and how much a day?
Thank you.. I think some of this has been doing a lot of hard work. Exercising, change of diet, attitude helps as well.
What kind of difference do you feel taking the sulfar?
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p.sunde
Member

42 Posts

Posted - Mar 13 2017 :  11:36:37 AM  Show Profile  Reply with Quote
Hi Cindy. The organic msm sulfur comes in a crystal it comes with a scoop and you take up to 3 scoops every 12 hours sulfur stays in your body only 12 hours every thing its says it does is happening to me i have been on it for 6 months now and will not give it up energy levels have skyrocketed its one of those things doctors dont tell you
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Dweebette
Rookie

USA
8 Posts

Posted - Mar 13 2017 :  6:51:22 PM  Show Profile  Reply with Quote
Hi Psunde,
Doesn't it taste bad? What do you mix it with? Why crystals and not capsules? Are there any meds that should be taken with it? Thanks

Edited by - Dweebette on Mar 13 2017 6:56:52 PM
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p.sunde
Member

42 Posts

Posted - Mar 13 2017 :  8:03:51 PM  Show Profile  Reply with Quote
Dweebette Yes it does taste bad by it self. You mix it with orange juice or any other juice or coffee. Crystals because that is the organic stuff if it is capsules it has been prosessed and no longer organic Take with vit. c
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mziegler
Member

USA
98 Posts

Posted - Mar 15 2017 :  9:13:08 PM  Show Profile  Reply with Quote
Hi All, I am going tomorrow for my 2 year followup. I can't beleive it has been this long. I never had any improvement from the coils. I actually declined after I had them implanted & have never gotten back to square one. I am interested to see my PFT's. I am sure they will show decline. I will be considering transplant again if I can loose a little more weight. I am glad, & a little jealous, for those who have had improvement. I will update after I get my PFT results. Hope everyone has a breath easy day/evening.

Melissa
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Jay
Rookie

United Kingdom
1 Posts

Posted - Mar 17 2017 :  09:19:57 AM  Show Profile  Reply with Quote
I had ten coils put in my right (the most badly afflicted) lung on Feb 1 at the Brompton Hospital, London as part of the REACTION trial. I was the second patient to be processed at this site for the trial.
After three or four days recovering from the procedure (sore chest, SOB, generally weak) I enjoyed slightly less than a week of greatly increased energy, capacity and general well being.
Then I began to feel ill and then very ill, with severe SOB episodes on very slight exertion. No other symptoms, good oxygenation, eating and sleeping well, no swellings, or signs of infection. When I complained of this my doctors did an X-ray to make sure all coils were properly in place (they were), suggested it was an exacerbation and put me on a weekís antibiotics and 10 days of 60mg prednisolone. Two weeks later- still no better Ė they gave me another x-ray, ECG, blood tests, a CT scan and observational tests.
The big fear was that I had developed a blood clot (I havenít). Thereís nothing wrong with my heart, no sign of infection, nothing. I am now on 10mg daily prednisolone and told to Ďtake it easyí without stagnating. Itís very puzzling as my 02 stats and PF (as measured by my little peak flow meter) have improved since the procedure. There is just this constant debilitating series of SOB episodes.
Itís all a bit puzzling, and to be honest a worry and disappointment. I narrowly missed out on getting coils as part of RENEW study in 2013 and since then have worked Ė doing other clinical trials, doing Pulmonary Rehab, sitting on the hospitalís patientsí committee, regularly attending their Singing for Breathing classes and doing everything possible to keep my name at the top of the list of suitable candidates. I had expected a new lease of life at this point but instead find myself worse off (I hope temporarily) than ever.
For the record Iím 65yo, good BMI, and in good general health other than my very severe emphysema (FEV1 19%). I exercise, eat well, still work part time, go to the gym or walk every day. Iím not on 02. Havenít smoked in seven years or drunk alcohol in 26 years. The second lung was due to be done on March 1 but now has been put off until I am over this.
Iíve taken a long time to get round to my question: Has anyone else had a similar reaction Ė taking much longer than expected to recover from the procedure? I still have complete faith in the theory of lung coils and confidence in my doctors and find it very hard to believe that it is the procedure itself which has led to this state of affairs.

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andiz
Rookie

USA
23 Posts

Posted - Mar 28 2017 :  11:29:15 AM  Show Profile  Reply with Quote
No improvement from the coils for me either. I was part of the crossover trial. Waited over a year after picked originally as control.Been very sick since then,about a year and a half now. Then went to see if eligible for LVRS surgery.First said candidate for lung volume reduction surgery and then said not. Had not testing for it at all so I am quite confused by this doctor. Looked at me and said I looked too good. Next time, if there is one I will go without make-up. At any rate had right lung coils got very very sick but did recover after about 5 weeks and though I felt a little better, could gave been all my exercising. So this idiot, incompetent doctor convinced me to do left lung. She even said I had some asthma. I was so bad that at one time I was on hospice care. This Doctor would not even approve me for a cat scan. She told company not related to coils. Sure was not related to a peanut butter sandwich.Well, at any rate I was told only thing left is transplant and not doing that. Just mostly at home waiting to die now. Company useless, no one calls you back, working hard at trying to sue doctor because I found out who Principle Investigator for the country is, Dr. Strange in South Carolina and he requested a new ct scan looking for aspergillis. He did not find fungus but did find that I had no coils in upper right lung, coils in mid-lobe. What a shock as they were supposed to be in upper right.

andiz
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p.sunde
Member

42 Posts

Posted - Feb 13 2018 :  1:19:12 PM  Show Profile  Reply with Quote
I see that you silenced me on the msm sulfur conversation i understand why because i put up a web sight my apologize for that but people do the research on msm sulfur it works the body needs it !!!!!!!
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Dave-OH
Administrator

USA
4104 Posts

Posted - Feb 13 2018 :  7:38:37 PM  Show Profile  Reply with Quote
I removed it as it was not related to coils and I have not monitored this thread carefully. Off topic, not Lung Volume Reduction or Transplant related.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

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p.sunde
Member

42 Posts

Posted - Feb 14 2018 :  06:42:25 AM  Show Profile  Reply with Quote
Please Dave don't silence me on this issue I am only trying to HELP people from my personal experience I believe it does very much be related to this topic Dave I don't know about you but I had the coils put in 11 in one 12 in the other and it did help but it is only a band-aid it's kinda like cutting a weed down it's going to grow back you have to take out the root and that is what msm sulfur does it goes after the root of the problem the cells PLEASE do the research and you will know where i'm coming from all I want to do is help people thur my experience is't that what this sight is all about HELPING PEOPLE
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Dave-OH
Administrator

USA
4104 Posts

Posted - Feb 14 2018 :  1:40:49 PM  Show Profile  Reply with Quote
If you bring it up again, I will silence you. Promoting things without support from your medical team is not something we do. If you continue, you will be locked out. You had your say, one time. I do not have coils, will never have LVRS or coils. I do run this board for the group, and maintain editorial discretion. This topic is specific, and I will not allow continued off topic posts.

It is also known as DSMO
Is DMSO available and approved by the FDA?
Yet in the United States, DMSO has Food and Drug Administration (FDA) approval only for use as a preservative of organs for transplant and for interstitial cystitis, a bladder disease. It has fallen out of the limelight and out of the mainstream of medical discourse, leading some to believe that it was discredited.

Other than its use as a prescription medicine, there is little or no scientific evidence to support other claims made about DMSO's effectiveness.

DMSO can also cause a deadly reaction when used in high concentrations.

Using DMSO by mouth can cause:

Dizziness
Drowsiness
Nausea
Vomiting
Diarrhea
Constipation
Decreased appetite
DMSO can increase the effect of some medicines, which can lead to serious health issues. Examples of such medicines include:

Blood thinners
Steroids
Sedatives
The biggest concern of DMSO as a solvent is that when it gets on the skin it will cause anything on the skin to be absorbed. So be sure to wash your hands and skin well before using.

Pregnant women and women who are breastfeeding should not use DMSO, since little is known about its possible effects on the fetus or infant.


You should also not use DMSO without talking to your doctor if you have:

Diabetes
Asthma
Liver and kidney
Always keep in mind that supplements are not regulated by the FDA. And be sure to tell your doctor about any supplements you use.

FROM WEBMD


Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

My Site: http://lungresources.com
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Dave-OH
Administrator

USA
4104 Posts

Posted - Feb 14 2018 :  3:13:03 PM  Show Profile  Reply with Quote
My point is with any supplement, talk to your doctor about it. Our medications and medical issues are too complex to take something based on one persons saying it works for them. It could make you worse or better, and a good medical professional will have insight into its interaction with your treatments.

I started melanomin only after my doctor suggested it and talking to my pharmacist.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

My Site: http://lungresources.com
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cindy414
Rookie

USA
14 Posts

Posted - Jun 09 2018 :  10:39:08 AM  Show Profile  Reply with Quote
Hello Everyone,
As you know I did have the Coils and have done well with them.This summer the FDA will be looking at this .This is a fact.
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PennyPA
Contributing Member

USA
5878 Posts

Posted - Jun 12 2018 :  12:33:08 PM  Show Profile  Reply with Quote
What does is the FDA looking expect to find that they're going to look at 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




Go to Top of Page

jmrommes
Contributing Member

1870 Posts

Posted - Jun 17 2018 :  3:19:20 PM  Show Profile  Reply with Quote
Unfortunately, the FDA turned down the Pneumonx Coils, primarily because of safety issues. Here's the reference

https://www.fiercebiotech.com/medtech/fda-advisory-panel-turns-down-pneumrx -s-elevair-lung-implant

The Zephyr and at least one other are still at the FDA waiting for approval.

Exercise not only lets me live, it enables me to have a life.
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Dave-OH
Administrator

USA
4104 Posts

Posted - Jun 17 2018 :  3:57:09 PM  Show Profile  Reply with Quote
https://www.fiercebiotech.com/medtech/fda-advisory-panel-turns-down-pneumrx-s-elevair-lung-implant

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

My Site: http://lungresources.com
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