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 I do not think that PFT is enough to stage COPD
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eves
Member

Canada
41 Posts

Posted - Feb 07 2017 :  4:26:17 PM  Show Profile  Reply with Quote
The GOLD standard determines a stage based solely on FEV1%. Unfortunately that doesn't seem to be a very accurate way to categorize us, it is not very accurate.
Stage I: Mild FEV1/FVC < 0.70 FEV1 #8805; 80% predicted
Stage II: Moderate FEV1/FVC < 0.70 50% #8804; FEV1 < 80% predicted
Stage III: Severe FEV1/FVC < 0.70 30% #8804; FEV1 < 50% predicted
Stage IV: Very Severe FEV1/FVC < 0.70 FEV1 < 30% predicted or FEV1 < 50% predicted plus chronic respiratory failure

It was revised and in addition to the FEV1% it takes into account the number of exacerbations and symptoms, stages A through D. I believe it was the COPD Foundation that came up with the revised GOLD standard.

A = Low risk, low symptom burden

Low symptom burden (mMRCof 0-1 OR CAT score < 10) AND
FEV1 of 50% or greater (old GOLD 1-2) AND low exacerbation rate (0-1/year)
B = Low risk, higher symptom burden

Higher symptom burden (mMRC of 2 or more OR CAT of 10 or more) AND
FEV1 of 50% or greater (old GOLD 1-2) AND low exacerbation rate (0-1/year)
C = High risk, low symptom burden

Low symptom burden (mMRCof 0-1 OR CAT score < 10) AND
FEV1 < 50% (old GOLD 3-4) AND/OR high exacerbation rate (2 or more/year)
D = High risk, higher symptom burden

Higher symptom burden (mMRC of 2 or more OR CAT of 10 or more) AND
FEV1 < 50% (old GOLD 3-4) AND/OR high exacerbation rate (2 or more/year)

GOLD is the Global Initiative for Chronic Obstructive Lung Disease. They're an international collaboration between the US National Heart, Lung, and Blood Institute (NHLBI) and the World Health Organization (WHO). For the last 15 years or so, the group has been working to provide evidence-based best practices for COPD prevention, diagnosis, and management.

When the first GOLD strategy report came out in 2001, it was thought that FEV1 was the best way to determine the severity of COPD, and to track progression. However, they now agree with clipper that it's not very accurate for individual people. It still has some value when looking at larger population groups, to try and find trends and probabilities and stuff, but it doesn't do a very good job for specific cases. So, as of the latest (2017) update that came out in November, GOLD classifications do not use FEV1 at all after initial diagnosis. Instead, they use the COPD Assessment Test (CAT), which is an eight-question survey that looks specifically at how you feel symptoms are affecting your life. (Some clinicians still prefer to use the modified Medical Research Council (mMRC) breathlessness scale, and there is a provision for that.) They also look at how many exacerbations/flares you've had over the past 12 months. Using those two values, you get put into one of those ABCD groups.

HOWEVER, some groups, like the American Thoracic Society, still use FEV1 to "stage" COPD. Personally, I'm hoping they get with the program of looking at symptom burden and functional goals soon, and I recommend to the clinicians that I see to use the GOLD strategies in the meantime.

eves
Member

Canada
41 Posts

Posted - Feb 07 2017 :  4:47:57 PM  Show Profile  Reply with Quote
I posted this because I have hunted the internet and argued with doctors and trying to remain sane. I just thought I would put this out there for others who are not believed by pulmunologists due to their high Fv1. But I also notice many patients go by FV1 or numbers in general. There are quite a few journals that state that there is no correlation between numbers, QOL, morbidity....in fact the japanese Chest journal reports on the problems with the numbers and how research is needed to establish new ways of testing. There are too many variables. Symptoms was listed as a good predictor of longevity. And that concerns me.

I have a link to the GOLD pocket book of 2017 which lists on page 9-12 the more complete way of measuring a persons health. It includes the MRC (medical research council) scale and the CAT scale. (copd assessment scale)

http://goldcopd.org/wp-content/uploads/2016/12/wms-GOLD-2017-Pocket-Guide.pdf

And a snippet of the japanese Study.
Koichi Nishimura, MD; Takateru Izumi, MD, FCCP; Mitsuhiro Tsukino, MD;
and Toru Oga, MD; on Behalf of the Kansai COPD Registry and Research
Group in Japan
Background: FEV1 is regarded as the most significant correlate of survival in COPD and is used
as a measure of disease severity in the staging of COPD. Recently, however, the categorization of
patients with COPD on the basis of the level of dyspnea has similarly been reported to be useful
in the prediction of health-related quality of life and improvement in exercise performance after
pulmonary rehabilitation.
Study objectives: We compared the effects of the level of dyspnea and disease severity, as
evaluated by airway obstruction, on the 5-year survival rate of patients with COPD.
Design and methods: A total of 227 patients with COPD were enrolled in a 5-year, prospective,
multicenter study in the Kansai area of Japan, involving 20 divisions of respiratory medicine from
various university and city hospitals.
Results: After 5 years, 183 patients were available for the follow-up examination (follow-up rate,
81%). The 5-year cumulative survival rate among patients with COPD was 73%. The effect of
disease staging, based on the American Thoracic Society (ATS) guideline as evaluated by the
percentage of predicted FEV1, on the 5-year survival rate was not significant (p  0.08).
However, the level of dyspnea was significantly correlated to the 5-year survival rate (p < 0.001).
The Cox proportional hazards model revealed that the level of dyspnea had a more significant
effect on survival than disease severity based on FEV1.
Conclusions: The categorization of patients with COPD on the basis of the level of dyspnea was
more discriminating than staging of disease severity using the ATS guideline with respect to
5-year survival. Dyspnea should be included as one of the variables, in addition to airway
obstruction, for evaluating patients with COPD in terms of mortality.
(CHEST 2002; 121:1434Ė1440)

Edited by - eves on Feb 07 2017 5:26:49 PM
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tsainta
Contributing Member

USA
1636 Posts

Posted - Feb 07 2017 :  8:19:01 PM  Show Profile  Reply with Quote
I have never understood why DLCO, which is measurable and related directly to dyspnea, has not been included in the severity algorithm. Any thoughts anyone?

Tony-CA

50% of dealing with COPD is common sense.
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jmrommes
Contributing Member

1648 Posts

Posted - Feb 07 2017 :  8:23:10 PM  Show Profile  Reply with Quote
My understanding, and experience, is that the DLCO varies too much from one test to another, for no reason anyone can actually identify or prove (lots of theories, but nothing objective, not even a good universal theory).

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

USA
3928 Posts

Posted - Feb 07 2017 :  11:38:14 PM  Show Profile  Reply with Quote
FEV1 is a good measure of severity, not longevity.

Eves, you are a forum member. If you want to become a member of our sponsor group, go to our home page. There is a link there.

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

My Site: http://lungresources.com
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eves
Member

Canada
41 Posts

Posted - Feb 08 2017 :  07:27:15 AM  Show Profile  Reply with Quote
I have spent two years following forums reading thousands of posters statements,reading many scholarly journals, trying to form some sense of numbers, symptoms. I do believe the numbers mean nothing at all. Symptoms are the predictor of where we are at. It is why people opt for surgery, it is why you reach a point of not being able to excercise....I think people get confused. We are able to exercise because our breath and body still allows it. There was a time I would promote exercise, because I was able to.....so in fact I thought I was functioning better because I exercised and ate well. I had to learn the hard way that in fact I was exercising because I 'could'.
And so often I see posters saying "my FV1 is so low and yet I lead an active life...etc". And I see people (and I was one of them) being bewildered and trying their darndest to make themselves do those things, because after all their FV1 is much higher so they 'should' be able to function better.
But it is all so wrong. I'm living it.
Because of the misinformation out there and doctors still clinging to the FV1, well it just plain stinks. I am on another forum and I see something happen time and again. A poster will post happily, joking and touting a positive attitude and exercise to those posters who feel they are suffering, and all of a sudden the 'positive' poster complains about their "new not so good normal" and then the posts are fewer and all of a sudden stop.
And I know exactly what that feels like. When you feel too horrid to post because each of your days are crappy. But I wish when people feel good or fair that they would understand that indeed many people just cannot "do" or "be'"

Now don't get me wrong, I'm a huge believer in exercise and nutrition. But in the end, we exercise because we can. I don't think anyone just wants to sit, in fact dyspnea becomes so intolerable that it makes you pace.
I just do not want others to feel bad because their disease is dictating their body against their mind.

For me, the garbage I have gone through in the medical system is close to inhumane. I have tried so hard to make sense of my numbers, I even wanted to believe the symptoms were in my mind, just so I could fix them, yet I knew that was stupid. And then you end up online and see others doing well and living long with a low Fv1 and end up going into more dispair.
Eventually you realize that many are like myself, yet just end up suffering and the inevitable happens and no one is the wiser.
I think there are many reasons for this. Doctors are not interested in following their own patient load numbers, to gather some commonalities, or lack thereof....and copd is not a favorite disease to spend time on, because it frustrates doctors when patients remain symptomatic. There is very little research done for wrecked lungs, self caused.
At one conference that a poster on a forum attends, the issue of PFT not matching up with function or death was brought up, so they are aware, but that awareness has not reached my doctors and it has crushed me. I need one pulmunologist that sees past the numbers and discusses life with me. If anyone knows of one, I will travel.

Anyway, sry to be such a dumper....got it off my chest.
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eves
Member

Canada
41 Posts

Posted - Feb 08 2017 :  07:31:31 AM  Show Profile  Reply with Quote
quote:
Originally posted by Dave-OH

FEV1 is a good measure of severity, not longevity.

Eves, you are a forum member. If you want to become a member of our sponsor group, go to our home page. There is a link there.



But you see, I and others think severity is measured by much more than FV1.

Dave, yes I will sponsor. I think these sites are invaluable.
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eves
Member

Canada
41 Posts

Posted - Feb 08 2017 :  09:03:04 AM  Show Profile  Reply with Quote
And another thing, we might talk about tolerance to symptoms. Possible that I am just a big wuss and experience my symptoms in the extreme. I have examined that aspect to no end. I think I know my mind and body, we all do. And if we might say that I am intolerant to symptoms, then that goes for everyone. I mean how does one judge symptom tolerance? If we go by the 'science' of spirometry and other tools, then there should be a science to establish the actual suffering/experience. But as of now we can only go by the persons relative experience. So it is real to them and that becomes truth or fact.
I have wanted it to be something I can fix with my mind, in fact I control the feeling of not knowing where to run to or what to do, with my mind, but the running still remains. The fear and panic can be controlled as to not having outward signs to those that have not been there, but still it is an exhausting struggle. To sleep for 3 hours per night, interupted every hour and try to remain controlled, it's nuts. I avoid people, not because I am depressed but because the pressure to perform is very tiring.
People do not get this disease, it is difficult to see the pink areas light up in the brain as the person is doing the 'work' of making the lungs perform, yet trying to hide the struggle. And the problem remains in that even the struggle just won't lead to a release at some point. It makes me sad, angry, frustrated, and vulnerable to the reality of life that I have a hard time accepting.
It's just that with all this happening to my body, it would be a breath of fresh air and possibly healing to have a compassionate doctor. It's called dignity in health. The body and mind are looking for resolution, a homeostasis and the ensuing struggle of trying to make peace with it all.
I am being transparent, because that is who I am and I see that a lot of positivity, or how we see positivity, what we think it should look like, being promoted. And I love it, I like to grab onto that and have tried, but it's not helping me with my reality.
And since we are all unique, in our being and our illness, I think it's important to show another side, even if it does not appear 'positive'.....but it might make someone feel less confused or even nuts.
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tsainta
Contributing Member

USA
1636 Posts

Posted - Feb 08 2017 :  1:05:17 PM  Show Profile  Reply with Quote
Good thoughts Eve. I think most of us share all or most of your frustrations. My view of exercise is based on my grandmother's operating philosophy (she lived until 95): use it or lose it. I suspect many COPDers who exercise overdo it slightly or maybe more than slightly in the hopes of some extra theraputic value. My approach to exercise is to simply ensure that my body practices doing what it needs to do, as well as it can do it. Of course, this has been on a gentle decline for more than two decades, but I'm firmly convinced that without it I would have died during a hospital stay two years ago and I would be much less mobile today than I am.

Tony-CA

50% of dealing with COPD is common sense.
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eves
Member

Canada
41 Posts

Posted - Feb 08 2017 :  1:13:57 PM  Show Profile  Reply with Quote
Thanks T. Is it Tony? I was trying so hard to use my indoor bike, but it's so hard, and I just keep pushing. I finally learned that I feel much worse the next day. And that just really bites. I was not overdoing it, tried to use common sense. I'm pushing through and then seem to decline. I'm still hoping for a better day where my mind does not focus on my breathing. It would be great if our minds could override, but I guess then we'd all be goners lol. All bones broken and no signal lol.
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micah35
Member

35 Posts

Posted - Feb 09 2017 :  1:03:12 PM  Show Profile  Reply with Quote
Hi eves. Since apparently your symptoms don't seem to match what doctors expect based on your numbers, I am curious to know if you have a normal FEV1, but a lower than normal DLCO?
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eves
Member

Canada
41 Posts

Posted - Feb 09 2017 :  2:40:41 PM  Show Profile  Reply with Quote
PRED. ACTUAL %PRED post bronch


FEV1 (L) 2.64 2.43 92 ------------------------ 208 3.20

FVC (L) 3.22 3.70 114 ------------------------ 2.51 3.93

FEV1/FVC (%) 79 66 83 70 88

FEF Max (Lsec) 5.93 6.49 109

FEF 25%(Lsec) 5.41 4.57 84

FEF 50%(Lsec) 4.02 1.57 43

FEF 75%(Lsec) 1.66 0.42 25

FEF 25-75&(Lsec) 3.56 1.22 34

FIF Max(Lsec) 4.95 5.44 109 ---------------------- 3.15 6.75

FEF 50%/FIF 50% (%) 90-100 38

expiratory time (sec) 9.03

_LUNG VOLUMES P. A. %P.

SVC (L) 3.22 3.64 113 ------------------------ 2.51 3.93

TLC (pleth) (L) 5.19 5.89 113 -------------------------- 4.03 6.35

FRC (pleth) (L) 2.87 3.71 129 -------------------------- 1.83 3.91

RV (pleth) (L) 1.84 2.24 121 ------------------------- 1.08 2.60

ERV (L) 0.94 1.47 156

RV/TLC (pleth)% 39 38 97

Raw (cmH20/L/s) 1.54 1.20 78 ------------------------- 0.43 2.65

sGaw (1/cmH20*s) 1.90 0.20 10 ------------------------- 0.55 3.25

DIFFUSION--

DLCOunc (ml/min/mmHg) 21.89 8.68 85 ------------------------- 14.95 28.83

DLCOcor (ml/min/mmhg) 21.89 ------------------------- 14.95 28.83
VA (L) 5.06 5.36 105

DL/VA 5.09 3.48 68 -0--------------------- 3.53 6.65

Edited by - eves on Feb 09 2017 3:12:37 PM
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eves
Member

Canada
41 Posts

Posted - Feb 09 2017 :  2:42:23 PM  Show Profile  Reply with Quote
Hi Micah, Lol it did not quite post as I had typed it but I'm not so good with the technical things.
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micah35
Member

35 Posts

Posted - Feb 09 2017 :  3:02:52 PM  Show Profile  Reply with Quote
Thanks so much, eves. I'm relatively new to this and not too good at making sense of all the numbers. I read it as FEV1 of 92% pre med, but not sure what the 208 refers to unless that is the post med %? I'm completely lost on what Adj DLCO % the diffusion numbers indicate.
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eves
Member

Canada
41 Posts

Posted - Feb 09 2017 :  3:09:39 PM  Show Profile  Reply with Quote
Hi Micah, Yes it got kind of jumbled. But the 208 is the LLN (lower limit of normal) and the 3.20 is ULN (upper limit of normal) and yes the numbers on far right are all "post Bronch", so not important, really.

The other numbers are in line with Predicted, Actual, %of predicted....in that order. So yes you are correct it is 92% of predicted for FEV1

Edited by - eves on Feb 09 2017 3:10:13 PM
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micah35
Member

35 Posts

Posted - Feb 09 2017 :  3:17:34 PM  Show Profile  Reply with Quote
Thanks, do you know what the DLCO percentage is? I am curious because my FEV1 is also in the low 90s but my DLCO is about 69% (Adjusted); and while I don't have very bad symptoms at this time, the doctors seem surprised that I ever have any shortness of breath/discomfort, and say that it must be related to something else.
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eves
Member

Canada
41 Posts

Posted - Feb 09 2017 :  3:38:48 PM  Show Profile  Reply with Quote
Hmm, I know it says 85% of predicted, but I'm not sure if that is good or bad. I am worried about hyperinflation.
I never have a good day and sleep eludes me. I am not in a good space. Does not look as if I qualify for surgery because of the type of emphysema. It's weird that your FV1 has to be low, since the only reason one would consider surgery is due to symptoms.
They've got this number thing all wrong. The qualifier should be QOL.
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micah35
Member

35 Posts

Posted - Feb 09 2017 :  4:47:24 PM  Show Profile  Reply with Quote
If it's 85%, that should be in the normal range. It is all very frustrating and, as you say, it comes down to how you feel, not what your numbers are; although it seems that, more often than not, they do match up to a large extent. I have terrible sleep problems also, but that is nothing new for me, so not necessarily related. I hope you get some answers and relief soon.
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eves
Member

Canada
41 Posts

Posted - Feb 09 2017 :  5:13:41 PM  Show Profile  Reply with Quote
Thanks Micah. Very kind of you to answer. Here is hoping to some good days. cheers. When I first joined I had popped into your thread but it was because I had no clue what I was doing. I'm getting better :)
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Dave-OH
Administrator

USA
3928 Posts

Posted - Feb 11 2017 :  9:06:14 PM  Show Profile  Reply with Quote
You do not have COPD or have very mild. And you are very wrong. The tests are a very good measure of our ability to move air. That is one of two functions, the second is DLCO that shows the ability to transfer the O2 from the air to the blood and CO2 back to the air.

COPD is a many faceted disease. It is actual 2 disease that occur together, one that is about moving air, and one using air. The lung surgery you mention is for those who can not use the air to transfer O2 to the blood.

You are seeking answers we can not provide. There are many other lung diseases. Plus heart disease that can cause symptoms. Please stop trying to be an expert. You have no idea what you are talking about. FEV1 is the best measure to track change in severity of obstructive lung disease.

I see some of the top experts in lung disease. To the fact that i just saw an Irish doctor who came to train with my two doctors at the University. They all use FEV1 as a primary measure of some lung diseases.

I will be deleting some of the material you posted tomorrow as it is very misleading. Now that I know you do not have COPD, it is not your cause. Find a great doctor to diagnose you. If in Montreal, I have cousin at McGill who is an expert.


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

My Site: http://lungresources.com
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eves
Member

Canada
41 Posts

Posted - Feb 12 2017 :  06:24:48 AM  Show Profile  Reply with Quote
Dave, you said I do not have copd. That is shocking on a copd site. I have had 4 cat scans within 2 years that all say moderate emphysema. The information I posted is there to show that symptoms and PFT's do not correlate often. I honestly have no idea why your response would be what it was. quote]Originally posted by Dave-OH

You do not have COPD or have very mild. And you are very wrong. The tests are a very good measure of our ability to move air. That is one of two functions, the second is DLCO that shows the ability to transfer the O2 from the air to the blood and CO2 back to the air.

COPD is a many faceted disease. It is actual 2 disease that occur together, one that is about moving air, and one using air. The lung surgery you mention is for those who can not use the air to transfer O2 to the blood.

You are seeking answers we can not provide. There are many other lung diseases. Plus heart disease that can cause symptoms. Please stop trying to be an expert. You have no idea what you are talking about. FEV1 is the best measure to track change in severity of obstructive lung disease.

I see some of the top experts in lung disease. To the fact that i just saw an Irish doctor who came to train with my two doctors at the University. They all use FEV1 as a primary measure of some lung diseases.

I will be deleting some of the material you posted tomorrow as it is very misleading. Now that I know you do not have COPD, it is not your cause. Find a great doctor to diagnose you. If in Montreal, I have cousin at McGill who is an expert.


[/quote]
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eves
Member

Canada
41 Posts

Posted - Feb 12 2017 :  08:44:27 AM  Show Profile  Reply with Quote
I came here to show my experience with copd. We are all different. And I posted relevant information to support those differences. I have emphysema, moderate. I came here for support, if I did not have symptoms, I would not need support. It was a slap in the face to wake up to this. It is very hurtful.
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rosytomato
Contributing Member

USA
1328 Posts

Posted - Feb 12 2017 :  09:28:34 AM  Show Profile  Reply with Quote
I don't think eves should have her posts deleted. I think that is a little harsh. Everyone will form their own opinions about what she wrote. Many very experienced people come here to read, learn, ask questions and share their experiences.

rosy

I stand corrected from he to she. Sorry.

Edited by - rosytomato on Feb 12 2017 12:20:05 PM
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eves
Member

Canada
41 Posts

Posted - Feb 12 2017 :  09:44:55 AM  Show Profile  Reply with Quote
Thank you rosy. I am a woman btw. I honestly do not want anyone feeling sorry for me, but I joined to share my experience with my emphysema. I am not an expert on other people's experiences and only left information that are from reliable sources. Just as 5 people with a 25% or whatever function they have are able to function differently, so do those with a higher function. My pft is one reason so many cat scans are done to see the emphysema changes.
The words "Now that I know you do not have copd" are nothing more than extremely hurtful. There was a post by an rrt on this forum who said she tests people all the time and there are those who can run circles around her with a very low pft and others who are very debilitated with a much higher FV1.
And that was the reason for my topic.
I sincerely wanted to share what I experience.
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RichardFL
Rookie

11 Posts

Posted - Feb 12 2017 :  12:55:16 PM  Show Profile  Reply with Quote
Hi, eves. I have also had a post (re-posting something from another site) that Dave's "top experts" did not agree with unceremoniously deleted. And being told to keep the stuff from that site off because his "top experts" disagree. I wouldn't have felt so bad if there had been some explanation other than, in effect, because I can and that they - his doctors - were the top experts for the deletion. On the other hand, this site has the greatest variety of subjects and depth of responses generally left, so it truly remains an invaluable resource for me and many others.
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eves
Member

Canada
41 Posts

Posted - Feb 12 2017 :  1:53:21 PM  Show Profile  Reply with Quote
Thanks Richard.
I think I will just focus on this topic, deleting is not a reflection on myself, so that is completely irrelevant. I am always open for friendship or support, and hopefully there are people on here that value those things. Again I am not an expert, I look for that in Thoracic journals and research material by pulmunologists that keep looking for answers to copd.
And I come to forums to see how other people fare, how different everyone's disease and symptoms can be, and to hopefully share.
Hopefully we can just move on.
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Dave-OH
Administrator

USA
3928 Posts

Posted - Feb 12 2017 :  2:04:04 PM  Show Profile  Reply with Quote
Look at the research from Dr. Bruce Trapnell and Dr Francis (Frank) McCormack. They are two of my several pulmonologists.

Here is the pubmed for the two of them, 160 and 152 article, plus Trapnell was published in Nature and is formerly at NIH.

https://www.ncbi.nlm.nih.gov/pubmed/?term=mccormack+fx

https://www.ncbi.nlm.nih.gov/pubmed/?term=trapnell+b


http://www.nature.com/nature/journal/v514/n7523/full/nature13807.html


I also see Mitchell Rashkin and Patricia M Joseph, who have done a lot of research. FEV1 of 92% and DLCO of 85 represent at worse mild lung disease. DLCO between 60 and 120 percent is considered normal. FEV1 and FVC from 80 to 120% are considered normal. Your Total Lung Capacity is over 100%. I you are short of breath have you been checked for heart disease. Also, the only abnormal number is the FEF.

PFT and CT scans are the objective diagnostic tests. How you feel is subjective. Even shortness of breath is subjective. Have your seen a resperologist or cardiologist to discuss your symptoms, or are you just doing this on your own?


Here is one source on PFT used for PCPs.

http://www.aafp.org/afp/2004/0301/p1107.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

My Site: http://lungresources.com
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eves
Member

Canada
41 Posts

Posted - Feb 12 2017 :  4:40:02 PM  Show Profile  Reply with Quote
Hi Dave. My objective cat scan says moderate. My Pft says mild and as you noted the FEF is not prime.
My symptoms are pretty limiting in QOL.
I have not been given the MRC or CAT scale test, and the PDF of the 2017 GOLD guidelines encourages pulmunologists to use those scales to be able to assess their patients in a more objective way. So the MRC and CAT could be considered subjective in an of themselves, but experts seem to feel a need for them because of how through research they have found that the FV1 should be used along with the MRC and CAT in order to stage patients in severity.

And yes I have had an echo and many ekg's.
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tsainta
Contributing Member

USA
1636 Posts

Posted - Feb 12 2017 :  4:57:42 PM  Show Profile  Reply with Quote
Do you smoke? Are you over weight? Are you just out of shape and need a progressive exercise program to build up your exercise tolerance?

Tony-CA

50% of dealing with COPD is common sense.
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eves
Member

Canada
41 Posts

Posted - Feb 12 2017 :  5:10:50 PM  Show Profile  Reply with Quote
I quit but started again because the symptoms are not tolerable. I researched that also..... I have constant air hunger. I am lucky in that my GP knows me for 25 years and knows that I can tolerate quite a bit of discomfort. I completely understand that the smoking caused the emphysema. I am not overweight. I have tried exercise, been to pulmonary rehab and kept up with exercise at home. There is a definite worsening of my symptoms the days after exercise. But I kept it up anyway, just pushing through, but something is not right. I cannot recoup after exercise anymore.
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Dave-OH
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USA
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Posted - Feb 12 2017 :  8:11:43 PM  Show Profile  Reply with Quote
Something is missing. I have an FEV1 way below you, on my best day it is 43% and on my worse low 30s. My DLCO is also lower at 55%. With those numbers it should not be lung disease. I have seen heart disease in my wife have the same effect, and she needed a valve replacement. I have also seen in in CHF. Have you seen specialists in lung and heart disease? My PCP would always refer this out. I do not have medical contacts in that part of Canada. I have cousins who are doctors in Montreal. I checked the elevation to make sure that would not be a factor, as I have trouble in Denver. You are only slightly higher than we are in altitude.

Here is some info http://www.rightdiagnosis.com/symptoms/air_hunger/causes.htm


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Dave-OH
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USA
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Posted - Feb 12 2017 :  8:49:18 PM  Show Profile  Reply with Quote
Also, do you have a pulse ox and are you checking your O2 stats and heart rate when you feel O2 starved?

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tsainta
Contributing Member

USA
1636 Posts

Posted - Feb 12 2017 :  11:03:09 PM  Show Profile  Reply with Quote
Have you considered that smoking, itself, could be causing the symptom of air hunger. I used to be a smoker, and I would say that was one of the symptoms that gave me the movtivation to quit--after some time of denial.

Tony-CA

50% of dealing with COPD is common sense.
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rosytomato
Contributing Member

USA
1328 Posts

Posted - Feb 13 2017 :  08:53:43 AM  Show Profile  Reply with Quote
Just wondering if you take any medications? Do you have asthma?
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PennyPA
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USA
5774 Posts

Posted - Feb 13 2017 :  10:49:29 AM  Show Profile  Reply with Quote
She may also have heart problems that are undetected. Of course, smoking is not good for either the heart or the lungs. And the pulse ox would give her some realistic numbers along with an ABG although that is only the general condition of the blood at the time it's taken.

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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  10:59:17 AM  Show Profile  Reply with Quote
Dave I have had an echocardiogram, normal, an ekg more times than I can count. They have done so many cat scans and x-rays that I glow, of course the emphysema is there, moderate.
Ox levels good,(yes I check it to try and come up with a relativity) but a year ago in sleep study went to 87 a few times and then I would arouse to get ox back up. So my gp put me on ox at night. My heart rate in morning used to shoot up by 40-50 Bpm and it would take a while to stabilize at 90. Then it waxed and waned throughout the day. I have had a halter for 24 hours and also two oximeter tests for nighttime readings. Thought about elevation, researched that lol, but I think it's not a factor, we are pretty low in the scale in Manitoba.
Considered smoking being a factor Tsainta, but a strange thing happened last easter, all of a sudden in one day, everything changed, I was near normal feeling and it lasted 6 weeks, yet I was smoking. Then it changed suddenly. Like a pressure, a tight band, stiff lung feeling, felt as if air was not going in or going anywhere, felt thick and swollen, like stuffed with cotton, and that just got worse and constant. It became so crappy that I was trying to fight it and fix it with excercise, but it seemed to make it worse. (static hyperinflated?)
I do not have asthma....I have tried a ton of inhalers in last 8 months, even though when I asked my pulmo he just shrugged and said they won't help. And the thing is, even if you have copd and have stopped smoking, at end stage, the crappy air hunger just controls your life. It's my constant companion, the tightness, the work of breathing.
But nights I was only sleeping for 3 interupted hours, so something had to give. I slept like that for 3 months. Between my gp and my research and trying inhalers, I have settled on Spiriva, advair, and my rescue. They seem to make some difference as I can control myself a bit. I spend every morning just making my brain get with the program, it takes an hour just to try and deal with how yuck I feel when getting up. I do some PLB, inhale, hold, exhale down into belly, hold....it is difficult, all my back muscles are getting used. The focus on the diaphraghm just does not keep my accessory muscles from working. It's a definite work of breathing going on. My gp is getting desperate to put me on morphine.....we have tried clonazepam, I think it helps some during day, but can no longer take it during night as I tried a few times and it definitely is making me wake up after an hour with a panic. I think what is happening with the clonazepam at night is that it depresses the system more and more co2 is building. I had an ABG, but it showed up alkalosis, and I and my gp deduced that my receptors are working hard to get rid of Co2 building up, so it is causing alkalosis....the body is in a constant state of trying to reach a balance.
I do not want to come across as an 'expert', but I have looked at possibly everything. And we know that when we live with chronic problems we start to do our own research to try to explain what is transpiring. A pulmunologist, at least the ones I have seen, are fine with those patients who respond to inhalers and are following a nice linear pattern of copd. I'm not by far the only one that seems to fall outside of the little box, but that was my whole reason for the thread.....that FV1 and symptoms and QOL, and time left, just do not correlate.
I do think that the way I feel is a good predictor of time left and I surely do not have quality. I try to create quality, but it is very much a desperate attempt with going through the motions. Most of my symptoms are indeed end stage, and yes I hate that and yes I am desperate to know otherwise, but I think I'd only be kidding myself. Yes it's a downer to talk about my present reality, knowing I have copd is not my fear, the symptoms are the problem.

What has been a huge disappointment is seeing pulmunologists that are hell bent on the FV1, and coping out to try and find something psychological, or theories. If we go by science of FV1, then we also cannot start having theories. What we know about lungs or many body parts, is not all there is to know. We will look back, and we already are, hence the research into FV1 and actual condition of patients.
I have even tried accupuncture, naturopaths, body talk therapy lol. And also went to see a psychiatrist, who thank god has deduced that I am indeed suffering and is not at all amused by me feeling as if I had to prove myself somehow in the medical system.
So I'm pretty thorough, again, that was the reason for original topic. Because obviously I'm far from being the only one. In fact, as I have said in another thread, my dad quit smoking, was diagnosed 3 years later, died one year after that. They could not find out why, because they refuse to let go of the 'mild' emphysema
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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  11:14:15 AM  Show Profile  Reply with Quote
Oh Penny, I was busy typing while you sent that. Yes I asked for another sleep study, to do my abg's in that state, but I think my body is very sensitive to oxygen and co2 and constantly waking me to correct it. Besides, they refuse to do another and the cardio guy just yells that the echo a year ago was fine.
And I cannot really force anyone to do yearly tests. lol.
The last three nights (well last night not so good) but yes they were a bit better after 3 months...I get up at 4;30 instead of 3. and have slept 4-5 hours straight. Not deep, but still much better. I added an aspirin before bed(researched) can't hurt.....and two puffs of advair in morning instead of one, and one puff at night. I guess it is a bit better, at least not having to suck on rescue every two hours during sleep. But still feel airless. Yes I forced myself to walk outside yesterday, but it sure is not what my body wants. I'm kind of in limbo and I have private things to say about certain things.....won't put it on a forum. But am willing to if someone emails.
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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  11:25:59 AM  Show Profile  Reply with Quote
Anyway, the last two years, I have badly wanted to believe what I heard about my FV1....must be in my head right? So I battle my head to no avail.
In september my pulmo mumbled, while looking at my screen, you could live another 30 years, you know how badly i want that, and how disapointing it is if the body betrays that? I should be feeling better he says, but it does not matter.
My GP came to see me at my house and is getting worried, it is palpable. When I told her that the pulmo said 30 years, her word was PFFT. I believe my GP and the shrink I enlisted are seeing a different story than my pulmo. I wish I had a different outcome. I am looking at a trip seaside, somewhere, still desperate for some illusive magic. duh
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Dave-OH
Administrator

USA
3928 Posts

Posted - Feb 13 2017 :  12:18:03 PM  Show Profile  Reply with Quote
FEV1, FVC and DLCO are objective measures of lung health. You may not like it, but doctors use these numbers to see how you move air and transfer O2/CO2. Sats are a good alternative to arterial and venal blood gas. The symptoms you have do not match mild lung disease.

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Dave-OH
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Posted - Feb 13 2017 :  12:19:45 PM  Show Profile  Reply with Quote
I renamed the topic, as it is your view, not a widely held view. And staged is more a treatment orientation than anything else. The more severe the more various treatments should be considered.

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eves
Member

Canada
41 Posts

Posted - Feb 13 2017 :  1:25:57 PM  Show Profile  Reply with Quote
If being staged is a more treatment oriented goal, why bother staging. Would it not make sense to treat the symptom and not the stage? Staging is about more, although we all know that they are trying to move away from staging because they (pulmunologists) and patients, know it does not compute. Many methods about the testing or understanding about the lungs and body in general fall very short on what is really going on within the lungs. But, it is all there is at the moment, but just because what we have now, should not diminish acknowledgement about it's fallibility in the here and now. I had a neurologist 25 years ago who called the MRI, obsolete. Why? Because he was very aware that in the future better testing would prove it to be obsolete. His observation was that if the MRI could not show him what he could not see, it did not mean the 'problem' did not exist. It was only because a better understanding of the organ and it's functions had not been discovered.

Just my thoughts.
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