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Thread: COPD patient, new to this site from Silicon Valley, CA

  1. #1
    Join Date
    Dec 2015
    Location
    Silicon Valley, CA
    Posts
    12

    Default COPD patient, new to this site from Silicon Valley, CA

    Good morning:

    I had my first pectus excavatum at 6 months old to keep my ribs from piercing my heart / lungs. Due to keyloids, I had my second surgery at 5 years old, and my third surgery at 9 years old. There was talk of doing another surgery at 14 or so for the same problem, but I put my foot down as I was done with the expense and we couldn't afford the treatment / it was bankrupting my parents and ruining their marriage.

    Through the years (I grew up on the East Coast, in Massachusetts), I had about 25-30 cases of pneumonia prior to moving to California in 1985.

    While I have worked for 42 years despite the challenges of my various birth defects, I don't tolerate the conventional medicines well. I have had an additional 5-10 cases of pneumonia in the 30 years I've lived in the drier California climate, which is a huge improvement over my childhood, and a longer life span than I ever expected.

    My employer sent me to China in 2009 for a short trip, and while there I was coughing up blood and crud due to the pollution in the air. Additional damage was done to my lungs, and my FEV1 rates began to fall more and more each year, further aggravated by a move to live closer to my new job in South San Francisco - and much nearer the ocean. (Love the beach, but cannot tolerate cold / damp at all well).

    Fast forward to December 2014, and my doctor has ruled out a lung ablation and again tells me my best option is a lung transplant as he pushed some powerful COPD medicine across the counter to me for my consideration. Given my challenges with tolerating the medicine, and the hefty side effects, I am now out on disability and considering stem cell treatments.

    Palliative care / hospice has always been my treatment of choice, since so many of the medicines do further damage compared to the problem they are trying to resolve. No one ever gets enough time in this life, but I would like to return to working if it's at all possible. Being disabled / retired at 55 is a bit crazy, and California is an expensive place to live. I'll be lurking around these pages as I read up on the Stem Cell therapies discussed, and try to come to terms with whether or not it's in my best interests to try it.

    The biggest thing that I'm noticing on the introductory pages is that few people come back to tell you how often they had to repeat the treatment, and whether or not it was worth it. I hope everyone will be forthcoming about their experiences as the company I am considering, The Lung Institute out of Arizona, only has anecdotal stories which go back for a single year. That's nowhere near a long enough timeframe to give me confidence.

    If a company has been doing treatments, and they have over 1,000 patients on their books, I would like to think that they would at least have some statistical numbers that they could share with folks considering signing up for treatment with them. This lack of even empirical data is a bit mistifying. I'm not made of $$$, so it is important to consider whether or not I can afford to start treatments, what regimens of follow up medicines one may be put on (for side effect risks), and what the likelihood may be for continuing wellness.

    Thanks to everyone who read this intro for their time.

    Regards,
    Joanne

  2. #2
    Join Date
    May 2007
    Posts
    12,692
    Blog Entries
    5

    Default

    Realistically, you could need a repeat treatment every year or two if you are seeing improvement and then those improvements start to diminish again. By improvement, I mean better quality of life which includes no more bouts of pneumonia, increased stamina and overall well being.

    There are quite a few doctors/clinics offering treatment for lung disease. One reason is that it is relatively simple to infuse the stem cells by IV. First pass is the lungs with IV and that is why most clinics offer that method. A few will offer delivery by catheter into the pulmonary artery, but frankly I find that a risky prospect and would not do it. Another reason is that some lung patients do respond quite well to simple therapies that require no manipulation of the stem cells. The FDA does not allow expansion (manipulation). There are other options to consider as well. You may wish to compare treatment options at several clinics if you have not already done so as it's important to feel comfortable with your selection.

    A few doctors are doing studies under an IRB and it is my sincere hope that when these studies are completed that the intent is to publish. Only time will tell. Until then, most of what you find will be anecdotal.
    First treatment in 2007. Pioneering ever since.

    Barbara

  3. #3
    Join Date
    Dec 2015
    Location
    Silicon Valley, CA
    Posts
    12

    Default Treatments and statistical data

    Thanks, Barbara. You highlight the very issues I'm considering before starting any treatment. I only knew of 4 companies before coming to this site, and now my list is up to 7, so the educational resources you're providing are excellent.

    Happy New Year, and I appreciate your feedback.
    Regards,
    Joanne

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