Oh, this is the news that I have been waiting for.I totally understand your thinking and it has certainly influenced my thinking as I go thru the study. Are you considering getting the valves now? I think we have that choice but how it is to be financed I don't know. Personally I think the sponsoring company should finance it if our insurance won't.

I agree about the tests because if I am disqualified in the next step, I have had some really extensive testing by a highly rated Thorasic surgeon.

I will keep you updated.

Thanks again. Read my status message and that will tell you how I feel about what you did.

Hugs,
Anna

I am so grateful to you for doing this Spiration Trial. I admire your bravery and fortitude. You have found a bright side to the whole situation and I think that tells a whole lot about who you are I pray that you do get valves and that you are able to enjoy the benefits for a very long time.
In admiration and respect, Ohana

Bless you Shirley for getting through this trial in one piece! You are so brave. And Bless you Anna as you begin your trial! You are both heroes to me!
Love & hugs, Sue

Ok Shirley get them valves and that house done, your disability so we can hit the road!! Play Thelma and Lousie or someone lol.

Didn't they give you an opportunity to get them, that was my understanding when I spoke with them about it.

I very much appreciate you Shirley and Anna for your courage and strength in doing this for all of us. Thank you.
Bless you,
Carol

I think this is fabulous! Thank you! Wow yes, courage...big time....Yay for you Shirley! I do not know what the valves are however...Are they anything like the stents?? Just wondering....Its also good to know that the top docs do the testing etc for these studies....I am looking forward to hearing a lot more about all of this...Thank you for sharing...
Love and Blessings, Serenity

Anna: I don't see anything on your status. You've been such a supportive friend, thank you. You go for it girlfriend, eyes are on you now. I don't know if I will get the valves, going to talk to my doc. I'm sure they will cover the cost, I think you have to do some more testing. My son suggested that I wait for the results to be posted before I make that decision if I can.

Ohana, Carol and Sue: Thank you all for your kind words, thoughts and all the support you have all given me. Not only through this trial, but through my new life here at DS.

Sassyme: I got the appraisal done now just waiting. I can't wait to hit the road! Waiting for house to close and my final medical results before I can quit working and file my disability papers, it get harder every day. The railroad retirement told me to wait until I quit before I send them anything. So back to the waiting waiting and waiting game.



Serenitysun: Go to Spiration.com

This is their website. Be sure to click on each of the topics on the top, they each have a drop down menu that explains the trial way better than I can. It even has a short video showing how it works. The stents and valves are different but they each work by being placed in the airways. Thank you for your support.

hey girl! youve done a great thing! thank you! and i guess you're right about being able to get them now! so , you do still have hope for something to help you.

you really are a brave soul for going thru all this...for all of us. thanks. and good luck on getting them...if that's what you decide you want.

take care
margaret

Shirley, sorry but I changed my status and I left it off. Just feeling kinda worn out and lazy.

It said "If people did not do trials/studies....there would be no new treatments."

Question: after looking at the site info, are you still a possible candidate if you have diffuse areas of involvement or is this an alternative to lung reduction? I know I don't qualify for lung reduction since mine is through out the lungs and I really don't have any "good" lobes ......
Appreciate any info.

One of the many things they made me do was go to a pulmonary surgeon to rule out that I was not eligible for lung reduction surgery, this is an alternative for those not eligible. What you need to do if you are interested is apply for the trial and let them decide if you are eligible or not. I would not tell them about any tests, they will do their own tests (plenty of them)and tell you, they may also suggest alternatives for you, I don't know.

It was a long long process. It took me months (April 07/January 8, 2009) from applying to getting approved to be in the trial and going through a long list of tests. They would tell me before EACH procedure 'Remember, you could get eliminated from the trial after they read the results of this test'. Either one of us could back out at any point. I felt like it was a miracle to make it all the way through all their process. I don't think it has been quite so long for Pearl. After they do or don't do the procedure (valve placement) it is a 6 mo. waiting period while you are double blinded (neither you nor your doctor know if you have the valves).

I went in for the valve placements on 1/8/09 and just became unblinded this week. There was a little delay unblinding me because of a couple of test that got forgotten. I haven't decided where I will go from here.

Shirley, you are one heck of a little trouper. Congrats on completing the study. I know that whatever you and your doc. come up with will be what is perfectly right for you.
Hope to see you again - one day soon. I have visions of Thelma and Louise going on a big adventure!
Hugs, Sandi

So Shirley, I have wondered often as we have talked about your valves. Wouldn't it be obvious to you that you had not had a surgical procedure to implant he valves??? Maybe I am asking kind of a dumb question, but I would think someone would know if they had a surgical procedure. Do they do some sort of fake implantation to make you think you may have had the implants???? Or, is it such a minimal invasive procedure that they can make you think you have had them. I guess so, since you did not know. I guess what I am questionong is what exactly did you go through to have received, (or not ) them? NO matter what, you and Pearl and everyone else who has gone through these things for us all, has my greatest gratitude and respect. Thanks my friend! JOAnn

PS In rereading my post, I realized how really stupid it sounded....(LOL) Please forgive me. I was just having a hard time articulating a curiosity about what exactly did they do when you supposedly received the valves??? Does that sound stupid too???? (note: I in no way mean to belittle anything you have gone through. Two years of jumping through hoops for this trial is huge. I am just Curious George. (LOL) Love Ya!

JoAnn, not a stupid question I was thinking the same thing but didn't want to sound stupid either -- lol

Shirley and Anna,
The courage it takes to do this! It's amazing. I too am involved in a clinical trial, for new & improved Spirvia, and I thought twice about doing it, glad I did. It is soooooo much better. I don't know if I got the higher or lower dosage, but I definately didn't get the placebo. Hope the FDA approves the medicine and the new Inhaler gizmo quickly.
Hugs, Lauie