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

  1. #21
    Join Date
    Aug 2013
    Location
    South Africa
    Posts
    9

    Default 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.

  2. #22

    Default

    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.

  3. #23
    Join Date
    Aug 2013
    Location
    South Africa
    Posts
    9

    Default

    Quote Originally Posted by Donna View Post
    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.

  4. #24
    Join Date
    Aug 2013
    Location
    South Africa
    Posts
    9

    Default

    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.

  5. #25

    Default 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.
    A-bubu-duh-bubu-dwee-dum
    Bay-buh-day bum-bum bay-dum

  6. #26
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,977
    Blog Entries
    1

    Default

    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?
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  7. #27
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,977
    Blog Entries
    1

    Default

    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.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  8. #28

    Default 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.
    A-bubu-duh-bubu-dwee-dum
    Bay-buh-day bum-bum bay-dum

  9. #29
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,977
    Blog Entries
    1

    Default

    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.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  10. #30

    Default

    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.

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