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Post by Blossom/Jackie W. on May 10, 2007 8:23:21 GMT -5
Rather than "move" your initial postings and intro, I copied and pasted portions here here since it is COPD related....
You said....
"Hi my name is Ellen and I live just outside Toronto, Ontario.......I had a cat scan the end of March and my specialist says I am a good candidate for either the balloons or LVRS. I have been waiting since April 9 to get an appointment booked in Toronto for an assessment..... "
You must be getting very frustrated Ellen; I know I would be. I know you've called and the chart is still sitting and waiting etc....Do you think it would help if you called again and asked if there was anyhting "you" could do that might speed up the process? Or; Is there any way to get your family Dr invloved?
Also; would you please expand on "balloons"? I know most people are familiar with LVRS (lung volume reduction surgery) but probably not the other term you used.
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Post by cocojax on May 10, 2007 8:58:51 GMT -5
My respiralogist advised me that there is a less invasive procedure that they do with a scope...They insert the scope into your lungs and insert the balloons in order to open the damaged lung area, in order to let the trapped air out. He says I have a lot of trapped air and that is why it is so hard for me to breathe. My O2 levels are okay, I just can't get the trapped air out. I have phoned once back to his office and she was really nice, she just said it takes quite awhile to get the appointment, which I am assuming is at Toronto General. I would much prefer that then the LVRS. As soon as I know anything ( I will ask more questions when she calls me) I will post it for sure.
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Post by Blossom/Jackie W. on May 10, 2007 19:08:36 GMT -5
Ellen; I have to say that that proceedure is interesting....many folks, including Phil who started this forum, have a problem in ridding Co2. Do you know what the "official" name for it is? .... Jackie
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Post by cocojax on May 10, 2007 20:11:49 GMT -5
I really wish I could tell you more, but it is the case of waiting to get the results of the Cat Scan, my respirologist's diagnosis and just being in shock as to the fact I was a good candidate for surgery. I should have asked more questions at the time, and I just realized I missed an appointment with my family physician today.. So I will have to rebook with him and maybe I can get some answers..I find more and more I am forgetting things, and have a hard time remembering things. Yesterday and today were very hard as far as breathing even though I have stayed inside most of the time. I realize that I am very fortunate to be a candidate, I just have to curb my impatience..  |
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Post by Blossom/Jackie W. on May 10, 2007 20:30:22 GMT -5
I can certainly understand the "memory" lapses shall we say....I have to write reminders for myself ALL the time.
Soon as things settle down here at the ranch a bit more I'll do some searches....It sounds interesting (your potential "balloon" surgery) As for the breathing....we've had alerts out here as well the past few days...The evening is when it gets me.
Keep us posted please and if I find some additional info 'll post as well.
Good Luck! Jackie
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Post by cocojax on May 10, 2007 20:54:36 GMT -5
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Post by Blossom/Jackie W. on May 11, 2007 9:24:17 GMT -5
This is an EXCELLENT piece Coco! I hope everyone sees it....
There's some other good articles on the same page as well.
Thanks for sharing...
Jackie
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Post by LindaNY on May 16, 2007 22:53:22 GMT -5
Great information. THanks for sharing. I did run that by my pulmo when I saw him on Monday but he said it's not all that good.  Maybe it's time for me to find a new doctor. |
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Post by cocojax on Oct 25, 2007 15:56:54 GMT -5
I have bumped this up as I think it is applicable to what we are talking about...Original Post May 10 |
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Post by AnnB on Oct 26, 2007 13:31:51 GMT -5
Things may be different in Canada so it may be available there, but here in the US there are currently three trial that I know of for a replacement for LVRS. The ones I know of are, Emphasys, valves; Spiration, valves; and BLVR, glue. None of these are anywhere near ready,, here in the USA.. for anone to elect to get the procedure. They still have a long way to go for approval...years away
Did any of you see where this tape was made? I notice the man does not use 02, nor did they say what his FEV1 was. I STRONGLY doubt that his resuts are typical. I hate when the media gets our hopes up so high with half truths. No one that may qualify for LVRS should put it off based on a hope that this may be the "fix" you are looking for. You may wait so long that you no longer qualify for a proven procedure
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Post by cocojax on Oct 26, 2007 19:28:09 GMT -5
Things may be different in Canada so it may be available there, but here in the US there are currently three trial that I know of for a replacement for LVRS. The ones I know of are, Emphasys, valves; Spiration, valves; and BLVR, glue. None of these are anywhere near ready,, here in the USA.. for anone to elect to get the procedure. They still have a long way to go for approval...years away Did any of you see where this tape was made? I notice the man does not use 02, nor did they say what his FEV1 was. I STRONGLY doubt that his resuts are typical. I hate when the media gets our hopes up so high with half truths. No one that may qualify for LVRS should put it off based on a hope that this may be the "fix" you are looking for. You may wait so long that you no longer qualify for a proven procedure The Dr. that offers this is Dr. Jonathon Truwit from VA. if you go to google and enter Dr. Jonathon Truwit Lung Stents this is the web sit e it gives you. So I don't think the media in this case is giving you half truths... Unfortunately I am not a candidate for LVRS as the emphysema is throughout my lungs, so if I could have lung stents (airway bypass) put in to relieve the trapped air, I would do it in a minute.... clinicaltrials.gov/show/NCT00391612 |
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Post by AnnB on Oct 26, 2007 22:28:52 GMT -5
Ellen, I think you misunderstood my post. The link you provided is to a clinical trial. You cannot just get the vents, even if you might qualify for them medically, a trial is limited to a limited number of people, and procedures in trial take a very long time to be approved. LVRS is a technique that has been approved, it has gone through the trial stage and been approved, and anyone that qualifies for the surgery can elect to have it done.
I don't think the results the man in the video had are typical. If it worked that well for everyone the procedure would be on the fast track for approval (I believe that BLVR is on fast track) but neither of the stent/valve procedures are.
LindaMT, don't change plumo doctor because of what he said about what he heard about the vents, I am afraid he may be more right than wrong.
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Post by cocojax on Oct 26, 2007 22:34:53 GMT -5
No I understood what you said and the link I provided is for clinical trials, for someone like me who has no other option but a transplant, the stents are an option that I would try and get in a trial for. When I go to Toronto General in November to the transplant evaluation Dr. I am going to ask about the airway bypass and see what is available in Canada. That is the leading major hospital for lung transplants, LVRS in Canada...
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Post by Blossom/Jackie W. on Oct 27, 2007 6:31:35 GMT -5
Ellen; it's worth asking about. Just becasue a facility is not yet listed on the Trials site doesn't mean it's not available. They're very slow in adding to it (the web list) outside of the US. And; becasue of the types of lung surgeries that are currently done in Ontario I would suggest that it's very possible they too (Ontario) will be doing the trials.
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Post by maryaz on Oct 27, 2007 22:14:23 GMT -5
I have just recently realized that many websites are slow at updating lists. Do as Jackie suggested and check it out.
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Maybe it's time for me to find a new doctor.
