Posted by AnnB on 5/10/2008, 9:47 am, in reply to "Re: Hey Gary or anyone with an opinion"
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Hi again Nancy, Well, here is more of my opinion, After reading your responses I think you should get tested, and if you need a push I will sure give you one. Go to Baylor and get tested. Call Baylor first thing on Monday morning and see what they want from you and then get someone to drive with you the 160 or so miles and get the testing....testing could possibly take two days'. The testing is painless, if there is slight discomfort it does not begin to be as bad as sitting on the fence wondering and doing nothing.can cause. Doing nothing, when you reach the point you have in the decision making process. makes no sense. http://www.debakeydepartmentofsurgery.org/home/content.cfm?proc_name=lung+volume+reduction&content_id=272 Baylor is a Medicare approved LVRS hospital so you should have no problem with insurance. If you don't have a supplement the co pays may be high but worry about that later.just get the testing done. Then you will know where you stand. Not until you test do you really have anything to think about. You are now worrying/thinking about something with no biases of fact to do your thinking. Baylor is one of the sites that did the Emphysas trials, it is where Gary participated in the trial. Gary had 6 vents, I think 6 are more vents than anyone else had placed. With this Empnysas vents I am not sure if the vents were the reason for the improvement or if it was the rehab required prior to having the vents. One of the women in the control group improve almost as much as those that got the valves because of the rehab. Remember also, even if the vents are approved in 2009 it is going to take awhile for doctors to get trained how to do the procedure and some may not do the procedure at all for what ever reason. You are delaying and I am not sure the valves are worth the wait, for the very slight improvement they give. At lest two of the people in the Emphysas trials that have had the vents, have thought about having LVRS. On another forum they have started a section to discuss surgical and "other options". Go to this site and click on "Surgical Options" http://www.copd-international.com/COPD/forum.htm While doing some searching for information for you I found this posting done a few years ago (2005) by CathyWi. I thought is was a great post so I have carried it over for you to read. Re: LVRS « Reply #12 on Jul 21, 2005, 12:11pm » -------------------------------------------------------------------------------- At MaryL's request, I'm posting something here that I posted to another forum a few weeks ago. There were many questions and a lot of positive feedback then, so posting it here may help others as well. I'm happy to answer any questions about my experience. Here goes: My daughter suggested I share my LVRS experience with other E patients. I had the surgery 6 months ago and it has given me my life back. Pre-surgery, I was in the ER and/or hospitalized every couple months with exacerbations, had a very high anxiety level, and couldn't even walk 30 feet without gasping for breath and having to sit for nearly 5 minutes, even tho I was on O2 at 3L. Others had to do all my shopping, cleaning, and just about everything else. Now I do it all myself again, albeit at a somewhat slow pace. I hadn't been in a store of any kind for over a year and a half; now I do my own grocery shopping, have a small garden, and don't have to deal with the terrifying feeling from shortness of breath. I no longer need antidepressants nor anti-anxiety drugs. Where I (and my pulmonologist) figured I might not live more than 6 months to a year, I now look forward to many years of being independent and productive. I still need oxygen 24/7, but only at only 1.5L The ONLY drugs I use now are Spiriva and Flovent. For anyone sitting on the fence as to whether to have the surgery, I offer my success story. It may not be for everyone, and not everyone can qualify (depending on where the damage has settled in the lungs), but it sure was a saving grace for me. Even tho I had surgical complications, I would surely do it all over again for the life-saving benefits. Hope this helps anyone who might be contemplating this procedure. PS - Because my life has changed soooo much for the better (more than I could even have hoped for), I'd like to add that for those who do not qualify for LVRS (and Claire, I'm also dissapointed that you didn't ), I'd still consider transplant as an alternative. When you're at the severe E stage, what have you got to lose? Life isn't much fun when you can't do anything and breathing itself is scary

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