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

  1. #11
    Join Date
    Oct 2011
    Location
    Vienna, Europe
    Posts
    158

    Default

    that sounds so much better...

    please let us know more in march.

  2. #12

    Default

    Do you think the embolism and the pneumonia were a result of having the coils placed?

  3. #13
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,979
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    1

    Default

    Donna

    I don't believe the blood clot was directly related; however what I believe caused it was the long hours stuck in traffic. Especially the last time we went there which was about 5 days before I noticed severe breathing problems as well as a rise in blood pressure and heart rate.
    I spent almost 6 hours sitting either in a car or in a wheelchair in the hospital with only a few minutes of walking around. I rarely sit for more than an hour at a time at home and never use a wheelchair except for getting around in these huge hospitals.

    The odds of pneumonia or an exacerbation after the coils are implanted are quite high (about 80%). I read the results of the coil trial in Europe and the incidence was quite high.
    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

  4. #14

    Default

    The pneumonia part is scary if the percentage is that high. I am very glad you are doing much better.

  5. #15
    Join Date
    Aug 2013
    Location
    South Africa
    Posts
    9

    Default

    Hi Jeanine, I am part of the RePneu Coil Study in South Africa. I had my right lung done in September and left lung done in Oct this year. I do feel a difference, especially on recovery. Both operations went well and no problems since. I have my next tests done on 27th Jan, which should show if there is a difference in my actual readings. I still have days when I am very breathless and other when I think that there is a huge improvement. I remain optimistic that as time goes by there will be even more improvement and I will have more lung capacity. I will keep you updated to my results after 27th Jan. If I can ask you how did you know you had a blood clot in your lung and how did they treat it. Was it due to the coils being placed ?
    Kind reagrds Margz

  6. #16
    Join Date
    May 2007
    Location
    New Hampshire
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    1,979
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    Default

    Margz

    I didn't know I had a blood clot but the symptoms I had were different than anything I had ever experienced. I had the chills, low grade fever (between 98.9 and 99.6) for days, high blood pressure and heart rate and extreme short of breath. It was very scary. I had pneumonia as well.
    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. #17
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,979
    Blog Entries
    1

    Default Update to my Renew Coil Trial

    I had 10 coils placed in my left lung on April 9th, 2015. The surgery went well and I was eating a turkey dinner 4 hours later and went home the next day. I felt pretty good for a few weeks, but once again ended up in the hospital with pneumonia for 5 days. It's been about 10 days since I was discharged and I think I am back to where I was before the second set of coils were inserted. My FEV1 has gone from 21% to 33% so far but I was told it takes up to 6 months to achieve the final results. I am heading to Beth Israel on June 2nd for my first checkup and PFTs plus 6 minute walk. Will post the results when I receive them.

    PS: for those who are new to this story. I now have 20 coils in my lungs. The first 10 were placed in my right lung last September.
    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. #18
    Join Date
    May 2007
    Posts
    12,696
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    Default

    Thanks for the update Jeannine. Margz - How are you doing?
    First treatment in 2007. Pioneering ever since.

    Barbara

  9. #19
    Join Date
    May 2007
    Location
    New Hampshire
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    1,979
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    Default

    I'm holding my own and doing much better than I did before any coil treatment. I feel like I have some type of life where I can make plans and not have to wonder if I will be too short of breath to leave the house. I was very fortunate to have been selected for this trial.
    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. #20
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,979
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    Default

    Visited Beth Israel on Tuesday, June 16, 2015 for a follow-up visit, PFT and 6 minute walk.

    Technician who performed the PFTs was unable to tell me the results due to the nature of the trial, but I kept track of how far I walked based on how many times I walked past the cones and it was about 950 feet. That is at least 250 feet more than I have ever walked in a 6 min walk. Plus, I didn't have to stop to catch my breath. On my home Peak Flow I am showing my FEV1 as .89 Liters or 37%. Prior to having coils my FEV1 was .51 liters or 21% Not a cure but definite improvement. The biggest change is the at least 70% less shortness of breath. Although the coil trial has closed, there are several valve trials still accepting patients., Visit http://www.clinicaltrials.gov and type emphysema and valves in the search box.
    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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