Post by AnnB on Jan 31, 2009 16:30:25 GMT -5
I am not a member here but I though my experience might be of interest. I think all of you visit other forums but I did not want to leave you all out. I enjoy the privilege of reading here.
My date for LVRS is set for Monday, February 2.
I am 75 years and 6 months old
I am 5' 4" and weigh 134 (fully clothed with shoes on lol) Down from 164, and I hope I don't find that 30 pounds after surgery. Do you think I will weigh less when they cut out all the old tarry, nasty pieces of lung?!
My FEV1 in 2008: 21% pre medication, 24 post medication......In 2003: 19% pre, 22% post
DLCO in 2008 33%.....In 2003, 44%
RV in 2008 223....In 2003, 301..... (I think this number may have been so high because it was my first test, and I did not put all the effort needed into expelling all the air.
Actually, most of my numbers have been about the same since I was first diagnosed in September 2003, over five years ago.... up a little, down a little. I have had quite a few full PFTs done, and as most of you know, the numbers can vary, depending on the effort you put forth and the person giving you the test (cheering you on).
I was also very motivated to get good test numbers after my first (diagnostic) test because my numbers were close to being too low to be considered for the clinical trial, and then when the vents did not work, I wanted to qualify for LVRS surgery. (I was in the Emphysas trial in 2005, and the vents did nothing to improve my numbers or the quality of my life....nothing!I)
I have been looking for a long time to find a surgeon and facility to do this procedure. I have finally decided to go with what I have available to me. It definitely was not as simple as yes or no. Not a question of do I want this surgery. I have known I wanted the surgery, and I was, and am. sure it will be very beneficial to me. I am having the procedure done in a hospital that is not on the Medicare approved list to do LVRS, nor does it do transplants, but it does take my HMO (Humana), and the surgeon has done one LVRS procedure before mine (April 2007) at this hospital. I spoke to this man (age 62) on the phone, and he could not stop enthusing about how wonderful he now feels. He did not know any of his numbers (that really surprised me); he just kept saying, "I was really bad, I was really bad...now I don't use any medication and no longer need 02. I wanted to question him about the no medication statement, but I was uncomfortable pushing him because he was only making the phone call to me at the request of the doctor's office
I have had only 12 weeks of rehab, and I have been very remiss in keeping up exercise at home. When I get around to walking the treadmill I can do one mile in 32 minute...hands free...no holding on.
My presurgical protocol has been nothing like Penny's, and I can honestly say I am not too comfortable with this.
I would like to add that I have not found it as easy as some people have said it is to get to where I am, the actually surgery. It is not as simple as it is frequently stated. Even getting tested to find out if you are a candidate can be a problem if you don't have a doctor that believes in the procedure. I had to fight all the way to get where I am, I just hope that it goes as well for me as it has for those that have gone before me. My numbers and the results of my VQ scan are very similar to Penny's so.... maybe I will have results as good as hers....I have hope.
Here are the results of my VQ scan. They will mean nothing to most of you, I am just sticking them here.
The left lung received 55% of the total pulmonary blood flow
The right received 45% of the total pulmonary blood flow
Regional perfusion of the lungs was as follows:
Left upper third=7.4%
Right upper third=4.4%
Left middle third=20.75
Right middle third=15.0%
Left lower third=25.9
Right lower third=26.6
And finally There is one thing that is now perfectly clear to me STRESS does adversely affect breathing and I now know this with absolute certainty.
My date for LVRS is set for Monday, February 2.
I am 75 years and 6 months old
I am 5' 4" and weigh 134 (fully clothed with shoes on lol) Down from 164, and I hope I don't find that 30 pounds after surgery. Do you think I will weigh less when they cut out all the old tarry, nasty pieces of lung?!
My FEV1 in 2008: 21% pre medication, 24 post medication......In 2003: 19% pre, 22% post
DLCO in 2008 33%.....In 2003, 44%
RV in 2008 223....In 2003, 301..... (I think this number may have been so high because it was my first test, and I did not put all the effort needed into expelling all the air.
Actually, most of my numbers have been about the same since I was first diagnosed in September 2003, over five years ago.... up a little, down a little. I have had quite a few full PFTs done, and as most of you know, the numbers can vary, depending on the effort you put forth and the person giving you the test (cheering you on).
I was also very motivated to get good test numbers after my first (diagnostic) test because my numbers were close to being too low to be considered for the clinical trial, and then when the vents did not work, I wanted to qualify for LVRS surgery. (I was in the Emphysas trial in 2005, and the vents did nothing to improve my numbers or the quality of my life....nothing!I)
I have been looking for a long time to find a surgeon and facility to do this procedure. I have finally decided to go with what I have available to me. It definitely was not as simple as yes or no. Not a question of do I want this surgery. I have known I wanted the surgery, and I was, and am. sure it will be very beneficial to me. I am having the procedure done in a hospital that is not on the Medicare approved list to do LVRS, nor does it do transplants, but it does take my HMO (Humana), and the surgeon has done one LVRS procedure before mine (April 2007) at this hospital. I spoke to this man (age 62) on the phone, and he could not stop enthusing about how wonderful he now feels. He did not know any of his numbers (that really surprised me); he just kept saying, "I was really bad, I was really bad...now I don't use any medication and no longer need 02. I wanted to question him about the no medication statement, but I was uncomfortable pushing him because he was only making the phone call to me at the request of the doctor's office
I have had only 12 weeks of rehab, and I have been very remiss in keeping up exercise at home. When I get around to walking the treadmill I can do one mile in 32 minute...hands free...no holding on.
My presurgical protocol has been nothing like Penny's, and I can honestly say I am not too comfortable with this.
I would like to add that I have not found it as easy as some people have said it is to get to where I am, the actually surgery. It is not as simple as it is frequently stated. Even getting tested to find out if you are a candidate can be a problem if you don't have a doctor that believes in the procedure. I had to fight all the way to get where I am, I just hope that it goes as well for me as it has for those that have gone before me. My numbers and the results of my VQ scan are very similar to Penny's so.... maybe I will have results as good as hers....I have hope.
Here are the results of my VQ scan. They will mean nothing to most of you, I am just sticking them here.
The left lung received 55% of the total pulmonary blood flow
The right received 45% of the total pulmonary blood flow
Regional perfusion of the lungs was as follows:
Left upper third=7.4%
Right upper third=4.4%
Left middle third=20.75
Right middle third=15.0%
Left lower third=25.9
Right lower third=26.6
And finally There is one thing that is now perfectly clear to me STRESS does adversely affect breathing and I now know this with absolute certainty.