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 I do not think that PFT is enough to stage COPD
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Dave-OH
Administrator

USA
3874 Posts

Posted - Feb 13 2017 :  1:50:21 PM  Show Profile  Reply with Quote
Stage is very important. You do not think so as it does not help you.

How severe a disease is provides clinical guidelines for doctors to follow. They will not perform a lung transplant unless someone is very severe; they use PFT and other standards to determine the need. Same with other transplants. All major system diseases try to provide clinical guidelines based on symptoms.

And the MRI is still not obsolete, they may have advanced the technology but it is still here and used as appropriate. Neither is the CT Scan. PET scan can show somethings they can not, but for different issues, different diagnostic testing is appropriate.


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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  2:36:50 PM  Show Profile  Reply with Quote
Yes I believe staging is useful. And I refer back to symptoms as being useful for staging. That has been brought up at conferences and it seems difficult for pulmunologists to move to the new guidelines.
If I had 30% lung function but functioned well and felt well, then what would the problem be. If staging by FV1 is not a predictor of life expectancy that is. And I think no one likes to be defined by a number only, as it is symptoms that eventually define us.
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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  2:41:40 PM  Show Profile  Reply with Quote
So you see where I am going with this? If I am staged with symptoms, then I might qualify for surgery, so that I could enjoy a few good years. Why bother having surgery because we are at 20%, if not for the relief of symptoms? It is symptoms that drive you to a doctor, to use inhalers and to opt for surgery. And it is looking for a QOL, not an extended life. Although a life extension might happen because less stress on the body and more movement.
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jmrommes
Contributing Member

1600 Posts

Posted - Feb 13 2017 :  4:59:54 PM  Show Profile  Reply with Quote
If you're so dissatisfied with your current pulmonologist, then find another one and get a second opinion. There are good pulmonologists the world over, so surely there's someone else you could see. I'm glad to hear that you've enlisted a psychiatrist; perhaps your PCP, your psychiatrist and your pulmonologist should all meet together. At least you'd have everyone in the same lace, talking with you.

Exercise not only lets me live, it enables me to have a life.
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Dave-OH
Administrator

USA
3874 Posts

Posted - Feb 13 2017 :  5:37:29 PM  Show Profile  Reply with Quote
The surgery has very specific guidelines and in this case FEV1 is not the critical one. It is O2 related and where the damage exists. At 85% you are not a candidate for the surgery. And there is a risk of death. Here is some information that you seem to miss.

Patient Characteristics That Predict Outcome for Surgery
Although the effects of LVRS added to medical therapy varied widely among participants in the non-high-risk group, researchers found two characteristics that helped predict whether an individual participant would benefit from LVRS. These were whether the emphysema was concentrated in the upper lobes (areas) of the lungs and whether exercise capacity was low or high. Exercise capacity was measured as described above - after medical therapy but before surgery, for those in the LVRS group. A low exercise capacity score was less than or equal to 25 watts for females, or less than or equal to 40 watts for males; a high score was more than 25 watts for females or more than 40 watts for males. These two characteristics combined to form four groups of participants who had different risks and benefits from LVRS:
Participants with mostly upper-lobe emphysema and low exercise capacity were more likely to live longer and more likely to function better after LVRS than after medical treatment. Thirty percent of the surgical group had a 10 watt improvement in exercise capacity compared to none in those treated with medical therapy alone.
Participants with mostly upper-lobe emphysema and high exercise capacity had no difference in survival between the LVRS and Medical participants, but those in the surgical group were more likely to function better than those who received medical treatment without surgery. Fifteen percent of LVRS participants had more than a 10 watt improvement in exercise compared to three percent of Medical participants.
Participants with mostly non upper-lobe emphysema and with low exercise capacity had similar survival and exercise ability after LVRS as after medical treatment, but had less shortness of breath.
Participants with mostly non upper-lobe emphysema and with high exercise capacity had poorer survival after LVRS than after medical treatment, and both LVRS and Medical participants had similar low chance of functioning better.

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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  5:49:47 PM  Show Profile  Reply with Quote
Thanks Dave.
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Dave-OH
Administrator

USA
3874 Posts

Posted - Feb 13 2017 :  8:07:14 PM  Show Profile  Reply with Quote
Your objection to the staging is that it prevents you from getting the surgery you think will help, not the general principal of setting standards for the level of the disease. I would think it is the same in Canada as the US, that government and private insurance will not pay for this surgery unless the clinical guidelines are met.

In addition, not doctor will perform this operation or the valve procedure unless the patient meets the clinical standards. You must be tobacco free for a period of time, I believe 1 year, and must participate and complete pulmonary rehab. Here is the criteria one center uses.

http://www.emblemhealth.com/~/media/Files/PDF/_med_guidelines/MG_LVRS_b.pdf

And here is one of the major insurance companies criteria.

http://www.aetna.com/cpb/medical/data/100_199/0160.html




Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  8:52:57 PM  Show Profile  Reply with Quote
Thanks Dave. Very informative. Thank you for all your help.
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