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...
I finally fired my pulmonologist and got a new one that seems to be proactive in my disease, unlike the former one.
I am interested in your input about my new doc's (Dr. O) comments about my PFT numbers. Took him a copy of my recent (Sept.) PFT, which the last pulmo never discussed with me. I requested a copy of the report--all of it, not just his notes, which were non-discript. This was different from what I've read on DS and on the internet, Dr. O was more interested in the FVC number than the FEV1 number. He said my FVC which is 71% is OK, the normal is 80%. And was not concerned about the FEV1 being 42%. However, he was very concerned about the DLCO number, which is 22%. Said it could indicate heart and/or clots issues.
Referred me to a cardiologist for an Echo, which did find a heart problem-- pulmononary hypertension. The cardio did not seem too concerned about it, only to say the only thing to be done for it is oxygen 24/7. Of course, once I got home I immediately got on the computer and panicked!! Doesn't seem to be something to be unconcerned about!! But, will talk more with the pulmo doc tomorrow, I hope.
Dr. O also ordered a lung CT and a lung ventilation/perfusion scan, finally got approval from the insurance company Friday and they are scheduled for Dec. 1. Hoping & praying for good results from those.
Also had to do another pulse ox overnight test to recertify for Medicare and will do a 6 min. walk tomorrow when I go back to pulmo for follow-up visit & lots of questions about PH. Fortunately he does answer questions and talk to me, unlike the last one.
So, ignorance is bliss!! Thought all was well in COPD Land. Although I had been trying to see my doc for 2 - 3 months because my SOB had gotten so much worse. Then when I got the copy of the PFT thought it was probably because of the drop in my FEV1 number. I would have never known about all this had I not finally got a new real pulmonologist. Or had the "big one!"
Our dear friend, Bill Hamilton, is the one that influenced me to not put up with so-so docs. He wrote something in one of his journals that made me question my doctor's attitude and I emailed Bill & told him a bit about it. He said get a doctor you can talk to and that talks to you and that is proactive about your healthcare.
Just wanted to share with y'all and appreciate any and all helpful comments about PFT numbers, pulmonary hypertension, etc. I did look on DS for a PH group and there is one but they are not very active. I also searched on our COPD group and found some good information from a post by jarca in January of this year. Thanks jarca! I had also found the one that was a little scary to you, it was to me, also-- probably that 5 year thing!!
Sorry for the long-windedness (is that a word??).
J
I am interested in your input about my new doc's (Dr. O) comments about my PFT numbers. Took him a copy of my recent (Sept.) PFT, which the last pulmo never discussed with me. I requested a copy of the report--all of it, not just his notes, which were non-discript. This was different from what I've read on DS and on the internet, Dr. O was more interested in the FVC number than the FEV1 number. He said my FVC which is 71% is OK, the normal is 80%. And was not concerned about the FEV1 being 42%. However, he was very concerned about the DLCO number, which is 22%. Said it could indicate heart and/or clots issues.
Referred me to a cardiologist for an Echo, which did find a heart problem-- pulmononary hypertension. The cardio did not seem too concerned about it, only to say the only thing to be done for it is oxygen 24/7. Of course, once I got home I immediately got on the computer and panicked!! Doesn't seem to be something to be unconcerned about!! But, will talk more with the pulmo doc tomorrow, I hope.
Dr. O also ordered a lung CT and a lung ventilation/perfusion scan, finally got approval from the insurance company Friday and they are scheduled for Dec. 1. Hoping & praying for good results from those.
Also had to do another pulse ox overnight test to recertify for Medicare and will do a 6 min. walk tomorrow when I go back to pulmo for follow-up visit & lots of questions about PH. Fortunately he does answer questions and talk to me, unlike the last one.
So, ignorance is bliss!! Thought all was well in COPD Land. Although I had been trying to see my doc for 2 - 3 months because my SOB had gotten so much worse. Then when I got the copy of the PFT thought it was probably because of the drop in my FEV1 number. I would have never known about all this had I not finally got a new real pulmonologist. Or had the "big one!"
Our dear friend, Bill Hamilton, is the one that influenced me to not put up with so-so docs. He wrote something in one of his journals that made me question my doctor's attitude and I emailed Bill & told him a bit about it. He said get a doctor you can talk to and that talks to you and that is proactive about your healthcare.
Just wanted to share with y'all and appreciate any and all helpful comments about PFT numbers, pulmonary hypertension, etc. I did look on DS for a PH group and there is one but they are not very active. I also searched on our COPD group and found some good information from a post by jarca in January of this year. Thanks jarca! I had also found the one that was a little scary to you, it was to me, also-- probably that 5 year thing!!
Sorry for the long-windedness (is that a word??).
J
just you describing the difference in how you are being treated makes me think a change of dr's could be beneficial.
my pulm has decided i don't need to do PFT tests as they are "misleading" so all he ever does is an CT scan any more.
in fact i haven't gone back to him in over a year now because i feel it is just a waste of time & money to travel that far to be told the same ol thing.
i have never heard of a lung ventilation/perfusion scan (let alone had one done)---please keep us informed; as it sounds like you are learning some things new to all of us.
i am glad you have found such a pro-active dr, but sorry that you are getting info that is scary.
my thoughts and prayers are with you!!!
((((HUGS))))
Hugs,
Dennis
I smiled as soon as I saw your picture. I hope you are having one of the better days!! And I hope your Thanksgiving will be nice and not too tiring.
Prayers coming your way every day.
Big hugs, Cindy
This is what I found on that lung vntilation scan. I am so very proud of you for kicking that quack doctor to the curb !! Lot of wasted tie on his part.
Your new doctor seeems to be on top of things, which ids the way a good lung specialist does. Keep us informed, get all copies of your reports, and if you have questions, ask the doctor to explain he numbers. This one seems like he would be willing.
Hugs to you
BJ
Best wishes to you...
Thanks for your comments. Dennis put it into perspective--thanks Dennis. Jarca & anyone else, if you have any doubts about your doc, look for another one. Look at what my previous pulmo did not do: he obviously did not look at the PFT that he ordered very well; he doesn't have a spirometry in the office; he hasn't ordered a PFT nor an overnight or 6 min. walk test since 2011; he's never done a CT (new doc does 1 every year for anyone that has smoked 30 or more years).
So far I like this new one. He's young--I wanted to ask him if he had a note from home for his absence from school!! But he seems to be a go-getter. I think perhaps some of the older ones get complacent.
I saw him again yesterday to do the 6 min. walk & get recertified for oxygen & go over the heart echo results. He told me that he is treating me aggressively to try to help me, which I really appreciate. He's not so concerned about the pulmonary hypertension either, so guess I won't worry. He's more concerned about getting the lung CT & scan done. Says he's concerned about clots.
I failed the 6 min. walk test. Putting me on oxygen when I walk more than 2 minutes & exercise. He upped my Advair to 500/50 and gave me Daliresp to take daily. I do not know anything about Daliresp, so would appreciate any feedback on that. And I'm concerned about the increase in cortisone in Advair. Any comments on that are appreciated, also.
Enjoy your Turkey Day eve eve!! Gobble Gobble Gobble!!
Happy Thanksgiving to you too !
When it first came out ,it was geared mostly toward those with chronic bronchitis or lots of mucus and I was not a good candidate for it.
Luck to those that can use it. Another med that helps is always welcome.