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Has anyone participated in the coil trials or have knowledge of someone who did?

Posted , 13 users are following.

brenda62546
brenda62546

I am wondering if anyone has had participated in one of the coil trials presently going on?

If so, how much have the coils made a difference? Please give us examples, such as an idea of your background symptoms and situation, as compared to the present symptoms and situation.

Also, does anyone know how long the benefits from them last, once placed in the lungs? 

Thank you! 

2 likes, 28 replies

28 Replies

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  • martin63346
    martin63346 brenda62546

    Posted

    Hi Brenda

    I'm still a work in progress as I have yet to have the other lung treated. I contracted Apergillus - a fungal disease - and am now on a court of medication, after which, if my lungs are clear, I can have the second treatment.

     

    • brenda62546
      brenda62546 martin63346

      Posted

      Martin,

      Thank you for the wonderful news...so happy for you...it sounds positive !

      Congratulations, and I hope your recovery will improve and as soon possible! 

      What COPD stage are you in, or what is your, FEV1 percent? How many coils did you have put in the one lung? 

      I am hoping that your stage and percentage will greatly improve. 

      Please keep us updated! I  am hoping they will put the Coils on market in the USA, and that many health insurance plans will pay for the procedure, since I am sure they will probabably be very expensive, hopefully not though. But, they are presently having the coil trials in USA, and have heard that they may possibly end sometime in 2016. 

      Please keep us posted...thank you!

      Brenda x

    • brenda62546
      brenda62546

      Posted

      Forgot to add.....I wish the same for the UK and Australia (and other countries too)....so nice they seem to be working with resolving and helping those who have emphysema or COPD. I hope Science keeps trying to find ways to alleviate COPD, and other lung diseases. 
  • julie01285
    julie01285 brenda62546

    Posted

    I first heard heard of them via a Mail article found on Yahoo , about a caretaker  who had them and very successfull.They changed his life .There are also valves  but am finding NHS has not done appropriate tests .I don't think on NHS yet. As poor breathing can be fatal this is not funny .
    • brenda62546
      brenda62546 julie01285

      Posted

      Julie, The article you read sounds so interesting to me, and I would love to read it too. I love hearing that about how it has changed his life, since that is so encouraging. I have also heard about the Valves, but not sure, but they may have found that some people had their Valves become dislodged or something? They need to test them better, and get a better outcome..lol...I like them too! 
  • bamawife
    bamawife brenda62546

    Posted

    I am so glad I ran across this info!! I've been in a pretty bad flare up here in the most humid part of the US, This actually gives me a bit of hope. Which I badly need right now.  A month ago I and a friend laid several pallets of sod, I shaved both the dogs, Then I got that good ole sob, tightness in my chest. I've not even been able to go to a decent large grocery store. I managed our little neighborhood grocery store, but it took lots of stop and rest, catch breath,etc. I broke down (or rather my son came home to take) me to our PCP.  I had started back on the Mucinex DM, on Sat. and thought I was getting better.steroid shot, antibiotic shot, 7 days of strong antibiotics and a gazillion mg Prednisone. I've been on the Symbacort and Sprivia with a rescue inhaler.  I'm hoping I'm waay better tomorrow. I'll be looking coil deal up.

    Thanks so much

    • brenda62546
      brenda62546 bamawife

      Posted

      Bamawife, 

      You are welcome, and I hope you get well and as soon possible! I love to read about the Coils...they are having trials all over USA presently. I am not sure when or if they will become marketable. The Coils are suppose to take the place of low volume reduction surgery, because it is non invasive (the surgery is very invasive). I have also heard that specific parts of Europe have the Coils marketable, and people are expressing great benefits from them! 

  • jim87175
    jim87175 brenda62546

    Posted

    Hi Brenda and the rest of the group,

    My name is Jim living near the Central coast of California. I have had copd since 2009 at least that's when I was diagnosed, and yes a previous smoker. I was hospitalized twice for sever exacerbations, no hospitals since 2012. I have been in a clinical trial for lung coils for one year. I am scheduled to have my first set of coils installed on 8/28/15 in Mountain View California. I have read as much as I can regarding the coils, most of what I read is promising. I am pretty excited about this and will report back to this group after my procedure.

    Regards to all,

    Jim P

    • brenda62546
      brenda62546 jim87175

      Posted

      Jim, thank you for letting us know! I hope everything goes well for you, and will be thinking about you, and praying for you too. I look forward to hearing about how the procedure went, and how you are feeling, and if there are improvements. Mostly, I am glad you will be receiving them, since I have faith in them too, and know that you are possibly going to be benefitting from them! Ty, Brenda
  • jim87175
    jim87175 brenda62546

    Posted

    Brenda,

    I had the coils installed in 2015. They were installed on 2 separate appointments about 2 months apart. I went through the clinical trial process during the year and finally had them installed. I did reply to Brenda's post over a year ago before the coils were installed. Honestly they have not done anything for me. After the second installation I went to the hospital because of excessive bleeding. Since then I was in the hospital again, last week because I caught a case of the flu. I was cautiously optimistic about this procedure, hope for the best but don't expect too much. As most of us know they work for some people and not for others. Would I do this again? From the results, probably not, but you have to take a chance if there is something out there. If you have an opportunity to do this maybe you should go ahead, it might work for you.

    Good luck in the futue with this,

    Jim P

    • brenda62546
      brenda62546 jim87175

      Posted

      Jim, thank you for getting back with us, and letting us know about your experience with having coils placed. Sorry to hear that the coils did not do anything, and you ended up in the hospital. I do not have emphesema, but have another lung condition, called bronchiolitis obliterus, so I can't have coils. But, it is nice that scientists are trying to find a way to give relief for lung diseases, such as emphysema. The only treatment or cure for my lung disease is a double lung transplant, which I plan to do. Presently, I have begun testing to be placed on the double lung transplant list, at a nearby lung transplant institute. I have been finding many individuals who have lung disease, have real success with lung transplant, but then again, it has it's down side too, but if people who have had transplants work hard at taking care of theirselves post transplants, they can be very successful in keeping their lungs for many years. It is best to try what we have to deal with, in order to keep doing what God intends us to do, and that is keep living. Thank you for sharing your experience, and sorry it didn't work out for you, Brenda

  • ed95618
    ed95618 brenda62546

    Posted

    Thank you for this, my brides doctor has suggested coils, but I wonder if he knows what he is talking about.I would like any info on this subject.
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