COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...

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KyleesNan 11/28/2008

Note for those that might be interested in this trial:

I have made it through the CT Scan (they test to determine if you lungs are bad enough but not too bad for the values and if the damage is in the upper lodes). They scheduled a Lung Scan (tests for air flow and mapping) and an appointment with a pulmonary surgeon to discuss other options (LVRS - my clinic doesn't do this, transplant and whatever else they can think of). If I make it throught those two appointments then I have a few more hoops to jump but getting very close to the end. Have a electrocardiogram somewhere in there to be done. Can be disqualified at any point. Will keep you posted.

deleted_user 11/28/2008

For what reason are you getting all of this done? I may have missed out on a discussion or something. I am interested. I hope the best for you. Take care.
Carol

deleted_user 11/28/2008

I missed this, too. It seems great. Look forward to hearing the results.
Best of Luck.
Becky

KyleesNan 11/28/2008

Here is a couple of Websites, explains the trial and also have good pictures

http://www.emphysematrial.com/whatis.html

and Spiration.com

deleted_user 11/28/2008

I believe that the IBV (Umbrella Valve) is used only when the damage is in the upper lobes of the lungs. (As KyleesNan's post above noted) I asked my Pulmonologist months ago about this and he said that I wasn't a candidate because my damage is in the lower lobes. There is surely something that is in trials for the lower lobes. Anyone aware of anything on or near the horizon for us lower lobe damage? GOOD LUCK to you KyleesNan!! Anna

deleted_user 11/29/2008

pearl, there's the ease trial that does some kind of valves. they look for people with "defused" damage. i'm checking into that now. i was almost able to get the lvrs...but at the last minute, they said my artery gases were too high. but all of my tests were borderline. so, i was just squeeking by to get it done...until the gases went up.
good luck.
margaret

deleted_user 11/30/2008

I have already qualified for the Ease Trial as far as their questionaire goes but there is no study available in this area at this time. I am not sure that I would ultimately qualify for the trials but I have an appt. with my Pulmonologist Dec 4 and I will ask him to clarify some of the questions I have.

I am participating in the "COPDGene Study" that required all of the prescreening tests that the Ease Trials appear to be requiring. The COPDGene Study is research only and nothing invasive. Anyone with more info , I would really like to hear about. Thanks, Anna

deleted_user 11/30/2008

Does anyone know if such trials are happening in Australia? Pearl's question regarding those with damage in their upper lobes, and seeing Mamaloo's story of having damage all over has spurred me on to ask these questions, which I'll be posing to my doctor here, Down Under. My lungs are damaged uniformly. i.e. all over, but my doctor won't say yay or nay to any future possibilities of extending my life and helping add to my quality of life. Any suggestions? Ziggy

deleted_user 12/06/2008

To Update: I have been reevaluated by my Pulmonologist and he says that I am now elgible at least to qualify in the initial criteria of the IBV trials. So this is good news but the trials are a series of qualifying steps so the best is to just hope you qualify.
Anna

KyleesNan 12/07/2008

Note: IBV Valves and Spiration are both the same trial. The valves are what they put in the Spiration is the name of the trial.

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