THE STUDY OF CHEST WALL MOTION IN END STAGE LUNG DISEASE
Okay, today is about the research study I've somehow gotten myself into. Went down today and Rebecca and I went way back into the hospital somewhere. Let me tell you, a person could get lost in there and no one would ever find them!! So much different from the hospitals I'm used to!! Anyway, today's test (don't know the name of it; will have to ask Rebecca) is research to see how the different parts of the chest wall (front and back) move either paradoxically or otherwise in a person with emphysema compared to a normal person.
There was a thoracic surgeon there from Brazil, getting some training on this machine and a young female tech (Elena) from Italy who does the testing and the teaching. This machine was first tested and used in Italy to see how leg muscles reacted in certain situations. They've been using it over there for about 15 years. Dr. Cooper wants to get it approved for use here at the U of P because he feels it's a less strenuous way to check a lot of the stuff a PFT shows. It won't show the diffusion but it will show how the lungs and chest are working. As we all know, there are a lot of people who won't or are physically unable to really do the PFT test well and Dr. Cooper thinks this will be the test of choice for those people. Anyway, I rattle.....
They stick 89 little stickers in a pattern on your front and back. The stickers reminded me of that candy you used to get on a strip of paper...little dots. There are 6 cameras (3 front, 3 back) that are hooked to a computer and they're taking pictures of these dots during all the phases of this test. You do each section of the test 3 times. Oh, and I even have a picture of me all "dotted" up! You can't see my face but you CAN see my fat belly and all the dots. They glow, LOL!
That "line" you see along the top of my right arm is tape to hide the O2 tubing because it would cause reflections, too, that the cameras would incorrectly try to pick up. As you can see, I'm wearing a sports bra (yeah, like I'm really into sports!) and they had to tape the straps and the center to make them narrower so the dots would fit.
First of all they have you stand on the treadmill and just "breathe quietly" (normally) for awhile. I guess this is to get a baseline. Then you take a deep inhale and blow it out...not hard...just blow it all out. Between each of the 3 times, you just stand there and breathe quietly. Then you do that "Inhale, now blow, blow, blow, blow hard" part that we're all so familiar with. Finally, you just stand there and when they tell you, you take a big "sniff". Just one sniff then breathe quietly. 3x.
Okay, all the breathing is done. Now we start the treadmill at .5 mph. Man, that's creeping along. 2 minutes of this. Speed it up to 1 mph (2 mins.), 1.5 mph (2 mins) and finally 2 mph (2 mins.) And that's all there is to this test!
I think the hardest part of this test for me was the standing there waiting between sections and such. I have lousy posture and boy, my lower back hurt! They asked if I wanted to sit but there were so many dots and my O2 tubing was so well taped, I surely didn't want to upset anything.
As you can see here, they had to tape the various parts of the bra in order to keep the dots in a nice row without interference.
Gosh, I look round-shouldered. If you get to be in this test and they take a "back" picture, make sure you stand up straight and don't slump!
I guess I was there for about 2 1/2 hours total. Don't get paid a red cent for it...no food, no mileage...just a nice "Thank you". I'll go through this again after rehab, before LVRS, after LVRS, and then 6 mos. after LVRS. That's not half bad. Much better than having to go somewhere every month.
Okay, today is about the research study I've somehow gotten myself into. Went down today and Rebecca and I went way back into the hospital somewhere. Let me tell you, a person could get lost in there and no one would ever find them!! So much different from the hospitals I'm used to!! Anyway, today's test (don't know the name of it; will have to ask Rebecca) is research to see how the different parts of the chest wall (front and back) move either paradoxically or otherwise in a person with emphysema compared to a normal person.
There was a thoracic surgeon there from Brazil, getting some training on this machine and a young female tech (Elena) from Italy who does the testing and the teaching. This machine was first tested and used in Italy to see how leg muscles reacted in certain situations. They've been using it over there for about 15 years. Dr. Cooper wants to get it approved for use here at the U of P because he feels it's a less strenuous way to check a lot of the stuff a PFT shows. It won't show the diffusion but it will show how the lungs and chest are working. As we all know, there are a lot of people who won't or are physically unable to really do the PFT test well and Dr. Cooper thinks this will be the test of choice for those people. Anyway, I rattle.....
They stick 89 little stickers in a pattern on your front and back. The stickers reminded me of that candy you used to get on a strip of paper...little dots. There are 6 cameras (3 front, 3 back) that are hooked to a computer and they're taking pictures of these dots during all the phases of this test. You do each section of the test 3 times. Oh, and I even have a picture of me all "dotted" up! You can't see my face but you CAN see my fat belly and all the dots. They glow, LOL! First of all they have you stand on the treadmill and just "breathe quietly" (normally) for awhile. I guess this is to get a baseline. Then you take a deep inhale and blow it out...not hard...just blow it all out. Between each of the 3 times, you just stand there and breathe quietly. Then you do that "Inhale, now blow, blow, blow, blow hard" part that we're all so familiar with. Finally, you just stand there and when they tell you, you take a big "sniff". Just one sniff then breathe quietly. 3x.
Okay, all the breathing is done. Now we start the treadmill at .5 mph. Man, that's creeping along. 2 minutes of this. Speed it up to 1 mph (2 mins.), 1.5 mph (2 mins) and finally 2 mph (2 mins.) And that's all there is to this test!
I think the hardest part of this test for me was the standing there waiting between sections and such. I have lousy posture and boy, my lower back hurt! They asked if I wanted to sit but there were so many dots and my O2 tubing was so well taped, I surely didn't want to upset anything.
As you can see here, they had to tape the various parts of the bra in order to keep the dots in a nice row without interference.
Gosh, I look round-shouldered. If you get to be in this test and they take a "back" picture, make sure you stand up straight and don't slump!
I guess I was there for about 2 1/2 hours total. Don't get paid a red cent for it...no food, no mileage...just a nice "Thank you". I'll go through this again after rehab, before LVRS, after LVRS, and then 6 mos. after LVRS. That's not half bad. Much better than having to go somewhere every month.
So, if sometime in the future, instead of the full pft, you're asked to step up on the treadmill and have 89 little dots stuck to you, it's 'cause of Dr. Cooper, Rebecca, Elena, and ME! Well, me and a hundred other people that might take part in this research, LOL!I did find out some other stuff, though.
Wow! I just looked at the title of this study: "Opto-Electronic Plethysmography for the Study of Chest Wall Motion in End Stage Lung Disease". Wait a minute...there are those two words again..."End Stage". How are we ever going to get these doctors, even Dr. Cooper, to stop using those words? I'M not End Stage...I'm "Very Serious" but certainly not "End Stage". I'm going to have to call Rebecca and ask if they'll change the title to use the words "Stage IV". Sheesh.
The EASE Trials
Yes, the stent trial part of the bronchus studies. Dr. Cooper's trying to get U of P in on it. A double blind... everyone will get a bronchoscopy but not all will get the stent. This is for people who are NOT eligible for LVRS because their emphysema is scattered all over the place. So, if you've been turned down for LVRS because of scattered emphysema, see if you are eligible for this test, the EASE Procedure. I know I learned some other stuff, too, but I forgot it already. If I remember, I'll post it later.
There are several other trials in the process using coils or stents. Visit www.copdforum.portalone.us and go to their Transplant and LVRS section. There is one very long thread there re: these trials. You can also do a Google search for either one. REMEMBER, no legitimate trial will ask you to pay money to join it so be very aware .. there ARE scams out there.
Wow! I just looked at the title of this study: "Opto-Electronic Plethysmography for the Study of Chest Wall Motion in End Stage Lung Disease". Wait a minute...there are those two words again..."End Stage". How are we ever going to get these doctors, even Dr. Cooper, to stop using those words? I'M not End Stage...I'm "Very Serious" but certainly not "End Stage". I'm going to have to call Rebecca and ask if they'll change the title to use the words "Stage IV". Sheesh.
The EASE Trials
Yes, the stent trial part of the bronchus studies. Dr. Cooper's trying to get U of P in on it. A double blind... everyone will get a bronchoscopy but not all will get the stent. This is for people who are NOT eligible for LVRS because their emphysema is scattered all over the place. So, if you've been turned down for LVRS because of scattered emphysema, see if you are eligible for this test, the EASE Procedure. I know I learned some other stuff, too, but I forgot it already. If I remember, I'll post it later.
There are several other trials in the process using coils or stents. Visit www.copdforum.portalone.us and go to their Transplant and LVRS section. There is one very long thread there re: these trials. You can also do a Google search for either one. REMEMBER, no legitimate trial will ask you to pay money to join it so be very aware .. there ARE scams out there.
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