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...
Hello again everyone first off let me clear any misconceptions up 1st I was a candidate for the lung reduction coils but missed the cut off of 395 I was 397. 2nd after that happened I started looking at what else was coming down the road and came upon the UBV valves and called about them. they informed me you had to have a certain type of COPD meaning heterogeneous lung and that many are shot down right away with a ct-scan so the University of Penn asked me to send my ct-scan from Temple Lung Center which I did and a month lather was called and said I was a good candidate . So now we get to where I am now I meet with the doctors this Monday the 13th to sign all the consent forms and go over all the procedures and any complications and to ask what ever questions I may have. Now even after this I may not get the valves its a 50/50 proposition one group gets the valves the other is a control group that they monitor and here is the good part though after 6 months in that group you do get the valves. So there you have it you all know as much as me to this point. now if anyone here has a really good question that they would like me to ask now is the time to let me know and I'll ask for your knowledge and my own. Again thank you all for your support as I start this journey and I'll try to give updates when there is something to tell
RIDINGNOW
Charlie
RIDINGNOW
Charlie
My doctor said the main problem with these studies is the chance of infection, and coils are not made to be taken out where valves are!! The infections are rare, but could happen anytime you add a foreign body to your body.
So that would be my first question, if infection/rejection set in, how is it handled?
Is there an age limit
Do you still need oxygen
OK, That was 3 questions....Hugs to you...You and Capt are our heros !! Best wishes to you both for a excellent outcome. Thanks for taking that first step or all of us.
BJ
These new studies provide hope that someday there will be help for others with copd. Some studies may turn out good some may fail, but at least we are not a forgotten bunch.
and of course with so many "sub-groups" of emphysema, let alone COPD, it may not help everyone, but it may help someone someday.
thank you for your willingness to be a human test subject.
My thoughts & prayers are with you as you go thru this journey.
J
ps. it is interesting that 3 of our members here are in different studies. i just entered a genetic study for another lung disease that they are looking for a link like the alpha1 gene, it is in "stage 1". good luck to you :)
My recent visit showed that my nbrs have improved and doc has increased the nbr of neb treatments from 2x daily to 4x daily. His comment was "This disease can't be cured, but this combination of meds seems to be working on yr airways. So same meds, just increase the frequency & get longer relief from SOB". "See you in 3 months".
Appears that I was having a really good day for my appointment. My FEV/FVC nbrs remained approx. the same and my RV nbr improved. They are looking for RV nbrs like 165-170 (&mine was close and suddenly decides to drop to 120??).
Yes, I have many questions. What brings about removal of these valves (all of them/just certain ones)? These valves have been used throughout Europe, what is the track record there.
UofPenn has many top docs. We are fortunate to live so close to medical facilities with such promising programs available to us.
Sending bunches of cosy hugs and angel cupcakes sprinkled with prayers. :-)
Leonie