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

  1. #1
    Join Date
    May 2007
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    New Hampshire
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    Default Update on my results from the RENEW Study for Coils at Beth Israel, Boston

    It has been 6 six weeks since I had 10 coils placed in my right upper lobe. The surgery was without any problems and I was eating a sandwich and drinking a cup of coffee a few hours later and spent two nights in the hospital. I felt so good on my way home that we stopped for a bite to eat and I noticed I wasn't short of breath at all; well, that was because I was still on a high dose of prednisone (40mg) and as I did the drawdown on the prednisone I noticed more and more shortness of breath. I kept hoping it was only a matter of time before I would improve but so far I have not had a single improvement. Last week, I went for my first post treatment checkup. The Pulmonary tests showed zero improvements and I did even worse in the six minute walk by 100 feet than I did before the coils were inserted. The xray taken that day showed no changes. The coils were still in place but no shrinking of my lung has occurred yet. I am hoping it will just take time to see improvements but I am not sure where it stands because no one has contacted me about how to proceed at this point. I am hoping I am an exception and other patients in the trial see better results. As part of the trial I am supposed to have the coils placed in my left lung in January but I am not sure if I will proceed at this time.
    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

  2. #2
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    May 2007
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    Default

    Jeannine - You were put through the wringer to even get into this trial. I know you could write a book about it. I am hoping too that it just is taking you more time to see results than anticipated. It certainly would be helpful if there was better communication.
    First treatment in 2007. Pioneering ever since.

    Barbara

  3. #3

    Default

    Well, nuts. Good things are supposed to happen to good people. Your going through this procedure inspired me to try to get into the lung valve trial here in Cincinnati. I received all the consent forms last week; and I go for my second interview next week.
    A-bubu-duh-bubu-dwee-dum
    Bay-buh-day bum-bum bay-dum

  4. #4

    Default

    Jeannine,

    I second Barbara's sentiments; I hope perhaps you'll see benefits with additional time.

    Best,

    C

  5. #5
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    Default

    I am in the hospital because all antibiotics to cure my pneumonia are failing. If you should decide to take part in the coil program have yourself tested for a nickel allergy first. I am positive that is my problem yet no one believes me. I feel better for a few hours and Tylenol is the only thing that helps with the chills, low grade fever, wrist and ankle pain, rapid heart rate and low oxygen levels. Proceed with caution.
    But thanks to our wonderful healthcare the hospital doctor can't have me tested for allergies. He can ONLY treat the pneumonia. So I have to wait until Tuesday just to see my PCP to get an appointment with an allergist? Insane.
    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

  6. #6

    Default

    How awful!!!

  7. #7
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    The healthcare system is completely insane. Get well soon!!!!!
    First treatment in 2007. Pioneering ever since.

    Barbara

  8. #8
    Join Date
    Oct 2011
    Location
    Vienna, Europe
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    158

    Default

    Hello dear jeannine,

    At first I was so excited and so happy to hear that you received your coils. But now I looked up on the internet what material this Nitinol is (the coils metal), well its an alloy, and there really seems to be nickel inside and some atoms are going into the body. I even found some scientific papers where they say you can get nickel allergy because of that alloy.

    I would do some skin patch tests for nickel allergy. Probably you are not really allergic. Otherwise I would remove it too..

    I am a little bit sensitive when it comes to these things too. So if I were you I would probably let them remove.

    There are also still these valves. They also shrink the lung a little. Perhaps these are not made of nickel, but only out of titanium. I have not fond out yet. If its only titanium then I would not be concerned about.

  9. #9

    Default Valves

    The valves used in the Spiration trial are, in fact, Nitinol - which is a Nickel/Titanium alloy. It appears to be the safest alloy used for a variety of devices placed within the body. If I get to have them placed in me, I shall keep posting as to my progress, or lack thereof.
    A-bubu-duh-bubu-dwee-dum
    Bay-buh-day bum-bum bay-dum

  10. #10
    Join Date
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    Default

    I should have updated my status with the coils. It has been 3 months now since the coils were placed in my right lung. I had some major bumps (pneumonia and a blood clot in my lung) but I am finally feeling much better. In fact, I am breathing better than I have in years. There is no sign of an allergic reaction. The blood clot was causing the problem. I am still going ahead with having the coils placed in my left lung some time in March. My lung function has improved if my peak flow and ability to do much more are any indication. I do apologize for not updating sooner.
    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

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