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...
Hi everyone! I am 47yrs. old. I was diagnosed with COPD/Emphysema last year. Since then I have tried several inhalers that make breathing a bit better for a short period of time, but affect me later that day, or the next several days. I have taken numerous PFT's, and get FEV1's in the 20 range. And shows severe COPD, but I have already been denied Social Security 2 times, since starting the process last year. After the first denial I hired a lawyer. I was told that it is because the persons doing the tests, say I am "not trying hard enough". Even the person who administered a PFT at the pulmonary doctor's office said "questioned effort on FVC maneuvers". I am giving all I have to give on these tests. But I had difficulty with keeping my mouth on the mouthpiece. The first time it felt like I couldn't blow any air out to open the mechanism inside the machine and it scared the heck out of me. On of the PFT administrators recommended that I hold my mouth on the mouthpiece, to remind me not to take my mouth off of it during the test. This helped greatly, and I completed the test. But when I did it for the administrator at the pulmonary doctor's office, she seemed to have a problem with me holding my mouth on the mouthpiece. To make matters worse, I am claustrophobic and have panic attacks, and am too scared to take a sleep study or go through with an MRI. I even tried to pshyc myself up for the MRI, by going there and checking out the machine, watching how it worked, having the techs tell me what exactly was going to happen. When the table moved me into the machine, my nose was only about 3 inches (max) from the top of the machine, and I had difficulty breathing and stopped the test. I have no idea where the fears, anxiety, and claustrophobia came from. These problems have only recently shown up, totally unexpected. And of course now I am really afraid of dying. I can't afford to go see a psychiatrist, and already had joined another group on this site, and figured I would check this group out. I hope that I can get some answers as to weather these problems are something that goes along with COPD/Emphysema, or what. I have more questions, but will save them for another post.
I did'nt have any trouble getting on disability but I have heard very few get it on first try and esp without a laywer. The tube u have to use on pft is huge and it is hard to hold in mouth but it is just something u have to do. You may have to go to different dr with different pft tech's. What do ur sats read and did they do a walk test.
you can go back and read a lot of the old post and learn a lot. i hope u can get it worked out. Huggs Georgia
I would definitely ask for a different pulmonary technician. I've found that some are more reassuring than others. Sometimes, I've been in tears at these tests, because they are so hard, and sometimes very scary. But you'll just have to keep your hands up by your mouth to make sure you get a good seal with the mouthpiece.
One other point I'd like to make with SSDI. They are interested in the psychological effects of your disease, and will take that into consideration when they look at your case. Don't minimize your anxiety or your panic attacks.
Welcome to our group. I'm sorry you're having so much trouble, but you've come to the right place. You will learn so much! Hugs, Sue
Ref Best %Ref 1 2
DLCO: 19.3 1.7 9 1.7
DL Adj: 19.3 1.7 9 1.7
IVC: .78 0.77 0.79
VA: 1.51 1.51
DL/VA Adj: 1.14 1.14
They do have open sided MRI that might help you. Why did they need a MRI? And may I ask why they blew air into your lungs for the sleep study?
I hope you can find some relief and get those test taken care of.
Hugsss
My new Pulm Dr staff is soo much better and not too surprising, the testing is a bunch less anxiety provoking. My number are still crummy and yes.. still during the testing I get a bit panicky on that long exhale cause my brain is screaming to stop and breathe but overall its not even an 1/8 as bad as the previous testing.
Maybe the answer is to request to be sent to another testing site and specifically mention how its because of how that person is doing the test and their behavior. The test is hard cause its suppose to evaluate the very limits of what we have but over time, I've found that the person running the test also contributes significantly to some of the stress this causes us. I know I won't ever put up with it again as I've now learned its not necessary and my tests can be done in a more professional and realistic manner.
Pontiac Slim
A friend who has been through several MRIs has managed to persuade her doctor to give her a valium to take an hour or so before the procedure and then a few minutes before. She is very, very claustrophobic, but says it makes a big difference -- she says it almost makes her like the process.
I would add to debib's remark that the techs do encourage you to breathe, breathe, breathe, or blow, blow, blow (depending on which test you are doing) but again my experience has been that it is supportive, not judgmental.
Best of all possible luck with this. We're rooting for you.