Update on my results from the RENEW Study for Coils at Beth Israel, Boston

Margz

New member
Lung reduction trials

Hello Jeanine,
Fantastic news that you are doing so well. I know that feeling all to well about to scare to leave the house in case of breathlessness. Unfortunately the coils I had placed in my lungs have not really made a difference to my breathing. I had my 6 months follow up and although the test show a slight improvement, no significant change has been noted. My lung capacity is still at 21% My 6 min test was 260m with lots of stopping. But I'm not going to get despondent and I do what I can with what I've got. I try to stay active, even at a snail pace. My doc has suggested that they start prepping for a double lung Transplant. I have to loose the weigh I accumulated while on cortisone for the past 4 years. I have since come of cortisone and the weight is dropping of. I will continue to see my doc and do tests at 6 months intervals. He explained to me that there is a very small margin where the coils work. But I'm very pleased to hear you are doing so well and totally blessed.
 

Donna

New member
Bummer Margz - Can I ask if you had any side effects when you had them implanted? I wonder what your doctor meant when he said there was just a small margin where they work. Maybe that is why they are slow to be approved. I wish you all the best. I am also glad that Jeannine seems to be feeling spunkier.
 

Margz

New member
Bummer Margz - Can I ask if you had any side effects when you had them implanted? I wonder what your doctor meant when he said there was just a small margin where they work. Maybe that is why they are slow to be approved. I wish you all the best. I am also glad that Jeannine seems to be feeling spunkier.
Hi Donna sorry replying this way only way I knew how. Yip bit of a bummer but hey still keeping the chin up. The margin was explained to me like this. There is very bad, bad, not so good. Your have to be bad for it to work properly. I'm very bad. But alive and therefore grateful.
 

Margz

New member
Sorry Donna, I failed to tell you that there were absolutely no side effects at all. the operation was minuscule. No pain or discomfort at all. I would recommend it to anyone because, I know it does work. A gentleman had it don't not too long after me and he is 50% better than he was before. I really believe in it. But a very pricy option if you have to pay for it yourself.
 

JC the Fox

New member
Valves

After going through the multitude of tests and procedures since late last year, I had to have a final CT lung scan performed. I was told today that my lungs don't have enough good sections left, so I am not in the trial any longer.
 

Jeannine

Pioneer Founding member
JC

I am sorry to hear that. I don't know why they drag this process out the way they do. I think the only thing that saved me from being rejected was the VQ scan I had done at Duke University last year when I went for the lung transplant evaluation which showed more lung function than they thought I had. It is so frustrating isn't it?
 

Jeannine

Pioneer Founding member
Went for another evaluation on June 30 at Beth Israel. This time I walked 994 in the six minute walk. The doctor said my lung function has doubled. He said it was .4 before the coils and is now .8. My hyperinflation has been reduced from 275% to 175%. Still high but much reduced. The doctor seemed very pleased. I am hoping that because my lung function was so low yet they kept me in the trial that it will help others to get accepted.
 

JC the Fox

New member
Frustrating

Jeannine - I'm happy to see that, overall, you have improved. It will be interesting to see if those improvements last for a long, long time.

It is very frustrating to have put in all the time and effort only to be rejected. The most frustrating thing was that I was told in the very beginning that my lung CT Scan would be the primary determining factor. To that end, doctors at the VA allowed me to have a CT Scan done there, and the results were sent by disc to the investigating team for "pre-screening." They, in turn, told me that the results were such that I should continue to have all the other tests performed. Apparently, the acceptance criterion is so small that very few people have been approved; and they are still recruiting.
 

Jeannine

Pioneer Founding member
JC

I am hoping my results will lower their standards. Only 10 qualified in Boston and 4 of them were in the control group. They are doing the coils on them in August. The surgeon said if you don't have at least 150% Residual Volume it will not help you. I have a friend who was in the valve trial in San Francisco. She has had the valves put in twice now and both failed. Sad to go through all of that and not see any improvements.
 

Bobcat

New member
The number of people who have viewed this thread shows how desperate patients are for anything to help with this insidious disease. The FDA has been given too much control when a procedure like this is approved and has been approved for years in other countries and yet still must go through years of clinical testing in the U.S.
 

Margz

New member
Coils / Stem Cell Treatments

Thanks for the update Jeannine. Margz - How are you doing?
Hi Barbara, Its been 9 months since my coil placements and I can't say that I feel a great difference in my breathing. I have however been of cortisone for 6 months and have lost 12 kg and that I feel has given me extra energy and I feel and can go a bit further now. I had stem cell treatment at the lung institute in Tampa bay in July 2013 and am considering going for another treatment, but really need your advise as I know you are more into the stem cell treatments and have a great deal of knowledge in that area. It is a 17 + hour flight for me from South Africa so I would appreciate your view on me taking a second shot at this.. After the first treatment I did feel great for 6 months then it seemed to wane.
 

barbara

Pioneer Founding member
Margz - Sorry to hear that the coils didn't do much (if anything) for you. I think as with anything a lot has to do with each individual's condition as to whether or not improvements are seen.

As for more stem cell treatment, personally I would never be able to make a 17+ hour flight, so I don't feel as if I could advise you on whether or not you should undertake it. It sounds like your first treatment was beneficial. That doesn't always guarantee results on a second go round however, but I am a believer that stem cell treatment has kept me from being completely debilitated. I did not stop at one treatment.

This is really a personal decision that only you can make however.
 

Bill Cole

New member
Hi Jeannine,
Thanks for the update on your lvrc procedure. Have been following your posts here and glad to hear your doing great after a rocky start. I was in the control group and the 7th of this month had my first procedure done in the follow-on trial. I'm pleased to report that my results have been all that I had hoped for. I havent done any follow up testing yet but I do know that my O2 stats have increased at least 4 pts. I still get sob with exertion but I'm able to do more with a shorter recovery period. Looking forward to my 2nd lung being done on the 25th of Aug.
Bill in Nor-Cal
 

Jeannine

Pioneer Founding member
Hi Bill

Thank you for sharing your results. It is definitely a life saving procedure and I hope it is fast tracked within the next year so more people can be given the opportunity. For me, the second set seemed to see the most improvement. Please keep us posted and best of luck on your next procedure.

There are several other people I know who are in the study who have recently gotten or will be getting them soon. They belong to a group on Facebook called COPD - New Treatments and Advice. I started the group to track the progress of people receiving coils and valves and any new trials coming up.
 

Advancells

New member
Pulmonary diseases

Hello Jeannine
I hope so that you will get better results next time. Further, stem cell therapy is an effective treatment option available for lung disorders. So, why don’t you try this. I have heard about a company called Advancells, providing these treatments successfully.
 

Jeannine

Pioneer Founding member
Update to coil trial.

It has been over 15 months since my first coils were inserted and 9 months since the second set. I am still holding my own. FEV is 35% (21% before coils). I can shower without much trouble and am keeping active without any major problems. I have been told that pneumrx is in the process of submitting the results to the FDA. Let's hope they fast track this.

The valve trial is still recruiting for anyone who might be interested. Here is a link to the locations.

https://clinicaltrials.gov/ct2/show/study/NCT01812447term=Valves+and+lung&rank=6&show_locs=Y#locn
 

Margz

New member
RENEW Coils

It has been over 15 months since my first coils were inserted and 9 months since the second set. I am still holding my own. FEV is 35% (21% before coils). I can shower without much trouble and am keeping active without any major problems. I have been told that pneumrx is in the process of submitting the results to the FDA. Let's hope they fast track this.

The valve trial is still recruiting for anyone who might be interested. Here is a link to the locations.

https://clinicaltrials.gov/ct2/show/study/NCT01812447term=Valves+and+lung&rank=6&show_locs=Y#locn
That's is fantastic news Jeannine, so If my understanding is correct, the put 2 sets of coils into your lungs, so you have 20 in each lung. I'm getting a call today from Tampa Lung institute to chat about more stem cell. This time the bone marrow one. have you have this stem cell before. I've only had the blood. I hope its not too much different. It is a long way to come but I'll have my portable O2 with me and make use of wheelchair.
 
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