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 lung volume reduction Coil (RENEW) study

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T O P I C    R E V I E W
Raffie Posted - Jul 10 2013 : 10:52:56 AM
Hi, has anyone had lung volume reduction coil? It's for patients with emphysema. I am looking into it for my mom. This study is being held at Temple in Philadelphia and I just started looking into it. Any info would be helpful. Thanks!
40   L A T E S T    R E P L I E S    (Newest First)
p.sunde Posted - Jun 04 2017 : 09:18:42 AM
Well went back to mayo clinic added another 120 feet to my 6 min walk i am now at 1600 ft. I feel almost the way i did when this all first started back in 2006 which is a huge different feeling. I don;t want to jump to conclusion yet but i do believe that the MSM sulfur that i have been taking for the past 9 mouth is becoming a huge factor in my success. Its like every day i get one step closer to becoming normal breathing again. I notice that in everything i do and its not that i am getting use to the breathing i am getting more back to normal. I guess what i am saying is you have to give your body what it needs to survive and heal itself sorry to say this but screw the doctors that tell you to live with it.I do want everyone to know i am not selling this nor am I promoting this, i am only using it and telling people what it has done for me, don"t get me wrong the coils helped at the beginning, but this stuff is pushing me over the top, Just do the research, MSM SULFUR
andiz Posted - Mar 28 2017 : 11:29:15 AM
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.
Jay Posted - Mar 17 2017 : 09:19:57 AM
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.

mziegler Posted - Mar 15 2017 : 9:13:08 PM
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.
p.sunde Posted - Mar 13 2017 : 8:03:51 PM
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
Dweebette Posted - Mar 13 2017 : 6:51:22 PM
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
p.sunde Posted - Mar 13 2017 : 11:36:37 AM
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
cindy414 Posted - Mar 10 2017 : 6:24:05 PM
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?
p.sunde Posted - Mar 06 2017 : 08:33:29 AM
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
cindy414 Posted - Feb 27 2017 : 5:54:57 PM
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.
PennyPA Posted - Dec 12 2016 : 10:08:17 AM
That sounds great! Congratulations! Keep us posted so we can see how you're doing over time.
p.sunde Posted - Dec 12 2016 : 09:14:24 AM
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.
PennyPA Posted - Jul 09 2016 : 11:05:08 AM
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.
p.sunde Posted - Jul 09 2016 : 10:06:46 AM
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.
PennyPA Posted - Jul 08 2016 : 11:07:44 AM
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.
barenstam Posted - Jul 08 2016 : 07:04:57 AM
In hindsight I would not have taken part in the trial.
Bob07 Posted - Jul 07 2016 : 10:42:45 PM
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).
p.sunde Posted - May 07 2016 : 09:06:24 AM
Well it has been a little over a week now and breathing is becoming much better.I am going back June 30 for the left lung.If it improves like the right life will be sweet.l know that it is early in all this but my breathing does'nt lie
PennyPA Posted - May 02 2016 : 10:16:18 PM
That sounds terrific, p. Congratulations. Isn't it nice to be able to breathe better?
p.sunde Posted - May 01 2016 : 11:46:25 AM
Had 11 coils placed in my lower right lung and was told the process went very well .The x-ray showed that my diaphragm was no longer straight but back to normal stage. My throat was the only part of me that was uncomfortable. Was released on Friday afternoon .Feel very good just not pushing things to fast yet but I will soon .Had no pain or irritation at all in chests .So far so good my doctors and nurses and my coordinator especially were awesome. Sounds like I will return in less then 2 months for left lung. To early to tell anything yet but something is feeling good fingers crossed
p.sunde Posted - Apr 18 2016 : 2:05:32 PM
well I finally got my testing done for the coils and I go in april 28 now I am excited will let know how things go after placement of coils
andiz Posted - Apr 06 2016 : 4:29:44 PM
thanks, you are right.
PennyPA Posted - Apr 06 2016 : 10:59:51 AM
Andiz, I can only imagine the turmoil you're going thru now, especially the party of feeling betrayed by the one doctor. What I don't understand is that if the study doctor said it was asthma, you wouldn't have even qualified for the coils and if it was emphysema, you would have had to meet almost the same criteria as LVRS.

What I don't understand though, is that you're saying you had exacerbations on the right and then the left lung. How did you ascertain that? And you've got to understand that your FEV1 is way better than most of the people on this board and that, yes, t's probably a big drop for you but you're a long way from "end stage" physically... but maybe not mentally. Get your mind off revenge and start living your life as best you can. Get into a pulmonary rehab program and get moving. They can't bury you if you keep moving!
andiz Posted - Apr 06 2016 : 07:22:40 AM
Hi Penny, I am trying. I guess because of this being such a sudden change for me it is so difficult to handle. Fev1 before coils was in the upper 30's so the drop is hard for me to handle. I am not used to exacerbations as I was one of the lucky ones who only got exacerbations every few years. When I questioned study doctor about having another exacerbation on the left since I had such a bad three week one on the right and I felt it was like one step ahead and two back from all the lung tissue destroyed she told me and my daughter it was asthma so no tissue destroyed so I went ahead with left. What a rotten lie. This exacerbation has destroyed my lungs as it was so bad and so long. What is motivating me a somewhat is trying to get back at such an unscrupulous person and doctor.
PennyPA Posted - Apr 02 2016 : 11:27:31 PM
Yes, andiz, morphine is used for end stage disease but at 24%, you certainly aren't at end stage yet...although I imagine the exacerbation could have created that feeling for a while. I can't believe you were on all 3 anti-anxiety meds at one time! You must have been like a zombie! I'm glad to hear you've weaned yourself off all meds except the usual copd meds. Which of those are you still on? I wouldn't worry about the mid coils. What's done is done there but getting rid of the one upper lung should make a difference you'll notice. You can read about the perfusion test at my blog below. It's called a VQ Test and it's all the way at the bottom. Get into that rehab program and get yourself moving. There's a good chance you'll even notice a nice difference just from the exercising.
andiz Posted - Apr 01 2016 : 4:22:47 PM
hello Penny, Morphine is used in end stage disease when a patient is gasping for air. Morphine helps to slow down the breathing and calm a patient down, It does not have a therapeutic purpose to really help breathing. I was put on that as well as Xanax , clonopin, the usual breathing meds and 120mg/day of prednisone. The prednsone is the worst. Have pretty much weaned myself off of all meds and trying to walk more and eat more but having a hard time now with motivation. Will need a pulmonary rehab program to be a candidate for LVRS plus an echo cardiogram which I have passed a few times for the coils and some lung perfusion testing. Then the proposal is right upper lung as that is problem and only a couple of coils, other coils mid and cannot be removed so that worries me. Just very angry that a doctor could do this to me and nobody seems to care.
PennyPA Posted - Mar 31 2016 : 10:13:10 PM
I'm not sure I understand the need for morphine and pred at all. Morphine is for extreme pain it is not used for exacerbations in COPD patients. It sure sounds like you got, and are still getting, a run-around from your docs.
andiz Posted - Mar 31 2016 : 5:29:51 PM
Hi, well, my exacerbation got so bad I needed morphine and mega doses of prednisone so the local pulmonologist, who was my doctor before the study, put me in hospice. The answer to why I was kicked out is best explained as the doctor was pissed off. I did not speak to her. My husband, a urologist, communicated with her. I thought it would be better going doctor to doctor. By this time I was in my third month or so of exacerbation. Once my husband mentioned to her that he had sent a copy of my CT scan to the head principal investigator for the country, Dr. Strange, who said she did not put enough coils in my upper right lung she told my husband there was no need for me to come back again and hung up. My husband was flabbergasted. Then we received letter saying it was mutual, no true at all. She did not want a bad result. Have not felt well enough to find an attorney. The deal was 12 months not 17 months to get coils. Their practice caused the delay by switching facilities before their ducks in a row. And the deal was upper right lung. Apparently there may be only 2 coils in my upper right lung. If not capable of doing your job and doing this to me then I question malpractice. Dr. Strange said if FDA approved he would put coils in my upper right lung. Pneumrx needs to make sure their physicians are qualified. Now my only shot is LVRS which I am going to pursue. Still trying to recover somewhat from last major exacerbation and all the prednisone side effects. Sorry for the long story but lots of stuff happened. Did call FDA as this physician should not be doing any studies.
mziegler Posted - Mar 28 2016 : 10:19:38 PM
andiz, I am sorry I have not been on this site in quite a while. I had my coils done at UT Health Center in San Antonio by Dr. Luis Angel. I am so sorry that you didn't get any benefit from the coils & you are having such a hard time. I don't understand why your Dr. released you. It is a 5 year study. So who is going to continue to follow you in the study? I also had exacerbations after coil placement & have lost some lung function. Not as much as you. I have had 2 hospital stays recently and now have to use a respirator at night. I am trying to loose weight & will try to get listed for transplant at UT in San Antonio. I am so sorry for your troubles. Let me know if there are any other questions you have. I will check in on site more regular.
PennyPA Posted - Mar 23 2016 : 9:23:18 PM
Why are you crippled and on hospice? Are you going to have the LVRS on your right upper lobe?
andiz Posted - Mar 23 2016 : 4:55:04 PM
well, saw Dr. Sugerbaker at Baylor College. His fellow thought transplant but he said LVRS right upper lobe as that is where the main problem is. So now I have had 2 radiologists , one thoracic surgeon and two pulmonologists, including a pneumrx surgeon who said as soon as approved he would put more coils in right upper lobe, FDA approval still about a year out and I do not have that time any longer. All asking where are the coils that were to be put in my right upper lobe as the majority are much much lower.Guess pneumrx needs to do better training as this physician has put my life on the line because she did not do what was promised. Nor, did one person advise me how sick I would become. My Fev1 is down to 24% from over 35%. Cant do anything now. Walked in on my own power,no oxygen on 11/3 and now crippled and on hospice care. Be careful who you see and fight for them to pay for their screwed up services.
PennyPA Posted - Feb 29 2016 : 8:14:43 PM
Baylor isn't on the list for LVRS. The easiest way to find out if the incorrectly placed coils in the right lung would disqualify you for LVRS is to call the thoracic department of a hospital on that list and ask. It IS possible to have LVRS done on just one lung. One of the ladies at Duke had just one lung done several years previously and was going to get the second one done when I was there in 2008. I guess it would depend on where those coils were placed.
andiz Posted - Feb 29 2016 : 4:41:03 PM
nothing can be done in this country until FDA approval. Already have been told for a more optimal result I would need more coils placed in the upper right apex of right lobe. Completely approve in Europe but private pay there. Looking into going to England or There is Dr. Sugarbaker here at Baylor hospital that does surgical lung volume reductions, Do not know if I qualify or if coils disqualify me.
Lora-WV Posted - Feb 28 2016 : 08:24:21 AM
Andiz I got my coils through UMPC in Pittsburgh and although they didn't help me much I was very satisfied with my
Doctor and his amazing staff. Give them a call and see if there is anything that you can do. They might have some
helpful suggestions. Good luck.
PennyPA Posted - Feb 26 2016 : 1:58:10 PM
How old are you? If you're not old enough for Medicare, you'll just have to stick with the trials and hope you can get someone to place the coils in the correct positions since any surgical procedure is going to be very expensive.
andiz Posted - Feb 26 2016 : 11:06:46 AM
not medicare
PennyPA Posted - Feb 25 2016 : 11:25:10 PM
No, there isn't any hospital in Houston that does LVRS to the best of my knowledge. Here's a list of Medicare-approved hospitals.

http://tinyurl.com/75dvw5h

You can send your records to one of them and see if you qualify. I'm not sure if having the coils would preclude a person from LVRS, though.
andiz Posted - Feb 25 2016 : 9:23:11 PM
Hi everyone, coils cannot be removed, at first they said first month but dr, thought more damaging, Getting worse each day. No doctor that can give me advice except more coils, Will not be approved by FDA until next year, If I am am alive I will be in bad shape by then so will not qualify. Would just love to know who is doing lung volume reduction surgery, Not here in Houston medical center, at least that is what I was told. Pneumrx would not even pay for my ct scan as doctor told then she was not 1005 from coils. What the hell did she thin I was having exacerbations from, a pedicure. I know most doctors are nice and most are trained well but this one thinks she is full of herself and as soon as she was questioned by mu husband, another physician about abnormalities on CT scan and blood work she fired me, she never spoke to me and never gave another doctors name to me. Alwts went with someone and no one like her unprofessionalism or her better than thou attitude,i was a nusrse practioner so not a dummy about medical stuff.
PennyPA Posted - Feb 25 2016 : 2:37:20 PM
I didn't know they couldn't be removed. From what I've read elsewhere, they can be but maybe they were talking about a different kind of coil.

As far as whoever told you that the LVRS is no longer being done because of the results and high mortality rates, they are probably still living in the dark ages and obviously do not know what they're talking about. The criteria for LVRS has been revised and when the surgery is done at a reputable, Medicare-approved hospital by a thoracic surgeon who is experienced with the surgery and knows what he's doing, the results are quite good. I'm in my 8th year post-surgery and doing just fine and there are others who had LVRS long before me and they're still doing well. I guess it all depends on a person's desire to live a better life and what they expect from the surgery. I just wanted to get rid of my SOB and get off O2 and both of those problems have been resolved.
gkrenn Posted - Feb 25 2016 : 1:34:12 PM
I would check with another facility. I had my coils placed in 2013 at UW Madison, WI. I have never felt better in my life. I did have a collapsed lung after the first placement, but otherwise nothing. Mine were the PneumRX. I know the trial is over but they may be doing them now. I'm not sure as I don't have to go back for another year. They paid all of the bills and my travel time.

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