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...
As noted I have a pulm visit coming up soon and when I go to these things I never seem to get to say anything. My doctor flies into the room and is the happiest guy I've ever seen. He listens to my chest - says nothing and I confess I forget every question I want to bring up.
I am having a problem with extreme fatigue - I seem to be able to sleep forever if nobody wakes me up. My blood oxygen levels when first getting up are in the low 80's. I suspent they may be dropping a few points below that at night. In the 8 years I've been with him we have never done that nighttime finger test, nor even an up to date PFT. We just keep increasing my o2 and saying nothing. Also if I am being active - household chores, shopping etc, I cannot keep them out of that level even on my Level 5 lpm.
In the past few months I've developed a mucus productive cough even during the night and this is something new. It happens in the day too but is really a bother at night so I sleep with a lined trash can by my bed. I'm not like others on the site where the cough is so constant as to be painful but it is a nuisance and a change.
I hear people out here on the site speaking about stages of this disease - I have emphysema - but my doctor has never mentioned this. I love him for his pleasant personality but should I press him to get specific? I'd hate to suddenly drop dead while still thinking I've got a long way to go cause there are some days when I really feeel awful? Has anyone out there got any suggestions on how you get a doc who seems reluctant to deal with any bad news to spit out just where you stand?
I'd sure appreciate any advice and suggestions about specifc issues and can print them out and make up a list. I might also add though that it is hard to keep this doctor in the room for very long so I've got to be fast and concise with my questions. Thanks to anyone with advise.
Love you all - Ruthie (aka dollaraudit)
I am having a problem with extreme fatigue - I seem to be able to sleep forever if nobody wakes me up. My blood oxygen levels when first getting up are in the low 80's. I suspent they may be dropping a few points below that at night. In the 8 years I've been with him we have never done that nighttime finger test, nor even an up to date PFT. We just keep increasing my o2 and saying nothing. Also if I am being active - household chores, shopping etc, I cannot keep them out of that level even on my Level 5 lpm.
In the past few months I've developed a mucus productive cough even during the night and this is something new. It happens in the day too but is really a bother at night so I sleep with a lined trash can by my bed. I'm not like others on the site where the cough is so constant as to be painful but it is a nuisance and a change.
I hear people out here on the site speaking about stages of this disease - I have emphysema - but my doctor has never mentioned this. I love him for his pleasant personality but should I press him to get specific? I'd hate to suddenly drop dead while still thinking I've got a long way to go cause there are some days when I really feeel awful? Has anyone out there got any suggestions on how you get a doc who seems reluctant to deal with any bad news to spit out just where you stand?
I'd sure appreciate any advice and suggestions about specifc issues and can print them out and make up a list. I might also add though that it is hard to keep this doctor in the room for very long so I've got to be fast and concise with my questions. Thanks to anyone with advise.
Love you all - Ruthie (aka dollaraudit)
1-write your questions down
2-write your symptoms down
3-have you been tested for sleep apnea?
there are many sources on the web to help you
I wish you the best
Michael Howerton
Time to find a new doctor. Mayhaps one that cares about something other than money. This guy sounds like a dollar mill. A new set of 5 patients every 15 minutes, 20 patients per hour. A real waste of your time and damage to your health. If I'm sick and I need help I have the doc's private line - he's answered wand provided help the 3 times I've used it. While you may not find one as kind as mine - I pray you find one that cares enough to talk with you...
Hugs,
Dennis
mike4186z welcome to our group!
hugs.
I have an appointment this Thursday and I'm going through the stupid mental process of deciding what I will and will not ask. It's stupid because - why not ask about all my med. concerns, period!!? I think it's fear - fear that a concern may be something really awful and I'm not prepared to accept one more thing. Hmmm just thought of this while I'm responding to this discussion. Interesting - may be I'll be better prepared this week.
He is highly esteemed in the medical community for his expertise. And is the kindest person I haver met.
There are doctors like him out there, you just have to keep looking.
My lung doctor was recommended to my by my family doctor and he is great never too busy.
Good Luck and God Bless...Praying for you..
Hi Ruthie,
The internet is full of "questions to ask your doctor" so I just picked this link.
The main thing is for you to take charge when he comes in, before he gets his stethoscope ready, say "Excuse me, Dr.....I have some questions that need answering and I would appreciate you taking the time to answer them for me.
It is good You have a good relationship with him, but it is true, he works for you. If he is not a lung specialist, ask him to refer you to one. If he is, he should have done all the tests on you and kept you informed every step of the way. (Any doctor should do that anyway)
It is YOUR body, YOUR health, YOUR lungs, so make you a list of questions and before he gets settled in good, tell him you need some answers.
I am sure others here could find you more questions, or/and just google "questions to ask your copd doctor" and put these all togeather, and trim them down to make you a good list.
You have the right to be informed and to get all the treatments available to you.
Make sure you include your cough and sleep problems in the list. And if he does not answer to your satisfaction, or brush you off, please find another doctor, because a good relationship is important but it will not save your life or maintain your health, but a good doctor who takes time to inform you, and answer questions, just might.
Hugs
Brenda
i have a pulm appointment next week & I have been working on a list of questions to ask.
my pulm is good about giving me time, so i try to "whittle" my list to the most important things i want to ask.
if i don't have a list, i don't remember a thing when i'm in front of the doctor and then as i drive away i start thinking, "crap, i didn't ask this....."
i have to drive 3 hours to see a specialist so i have to make that time count!
i also have a little hand held recorder that i record our conversation otherwise later i can't remember what the dr said to me (i always ask 1st & explain that the info is just for me)....i can't take notes & think at the same time LOL)
all of my dr's are used to me with my list & my recorder now.
at least if you have a notebook in your hand when he walks into the room, he'll figure you have some questions and that he's going to be there for a bit LOL
hey brenda, you link is good for the 1st visit, but do you have any suggestions on later visits ( i'm like ruthie, even tho i have gone before, i have never been told what "stage" i'm in; so that is on mine this time)
ruthie, on my list (so far) i have;
1. what "stage" is each of my conditions? (i have more than 1)
2. what is my "progression" from a year ago?
3. what is my "prognosis" (yes, i want him to guess & give me his best estimate of what kind of time i'm looking at)
4. why doesn't he want me to do a PFT? (my pulm just has me doing HRCT)
.....then i just have a list of some of the things that are different since i last saw him which may be different for you & a couple of "personal" questions.
c'mon everyone...throw in your suggestions what YOU would put on a list---i could use the help too :D
Ask about doing exercise at home, ask what shots you need, going out in crowds, wearing a mask, o2 levels, humidifier , taking supplements, taking steroids, brittle bones, and taking calcium , if you have osteo.
I will try to find a second visit type web page, but most seem to focus on finding out if you have copd or not!!
Also ask is yours more bronchitis or emphysema, or both. Ask how can you tell if your disease is worsening or is it just a normal part of it. (Like my cough) If I think of more, I will post them.
Hugs
Brenda
Hopefully your doctor is wisely reluctant because he just doesn't know.
I know I have COPD (stage? don't know) and a day at a time I do what I can to make today count (how long? don't know).
Take care...I hope you have a productive appointment.
Today you all broke your personal best for number of consecutive days lived!!!!
Peter...
Jarca you sound like you have all your bases covered. I always go in armed with a list too, but, the recorder is brilliant!